Update on my rheumy appointment this morning. Wha... - LUPUS UK

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Update on my rheumy appointment this morning. What a shocker!

Nikkisrf
Nikkisrf

Hi guys.

Firstly thank you so much for your wonderful lovely responses. You all gave me that bit of extra umpff to do it this morning.

It's not all good but for him... honestly I think someone has said something to him. A warning a general"be nice" talking to I don't know. Perhaps he's been reading our posts? Who knows. But he was really nice to me this morning! My telephone appointment was at 11.45am but after my email and photo evidence he decided to ring at 9.40am. so he had plenty of time to talk to me. (Ok he spent 40minutes on phone) but better than I expected. I don't think he actually read my email or looked at pictures, because he asked me what's wrong and I kept referring him back to the email and pics. But he was very nice to me. (He is egyptian) at the end of our conversation he referred to me as a camel. Apparently it's a great compliment. Camels carry great loads never complain never give in. He said he's honered to have me as a patient because I put up with so much for so long but never give in. He has doubled my azathioprine to take over some of the work of the steriods and does not want to raise my steroids again because they have made me so I'll with cushing's. He doesn't want to do that to me again. He is concerned about the protein blood and glucose in my urine. So I'm having a blood test and urine test. When he gets the nurse to ring me for appointment. He did concede (do you understand this guy's?) that looking more closely at my previous blood test that my C4 is on a downward low curve? Which concerns him?

I then very tentatively adresed the message that my gynocologist wanted me to pass on to him about my CA125 test being MY inflammation marker. I was really frightened to say it but I did it.

OH MY GOD!!!! He said he is very pleased the gyny is very very clever as there are only a handful of drs that know this information. And yes she is totally right!!!! (I nearly cryed I was so relieved) he said they will look at this now as MY marker. He was very impressed with this information. So he's going to look more closely at my new blood tests when I get them

That's the good stuff.lol he wouldn't answer the question mark over my lupus. Shut me down when pushed about 30% of lupus patients don't have positive ana. Wouldn't committ to what's causing my problems. Just kept saying sjrogens this sjrogens maybe that. Wouldn't address my painful twisted hands ,swollen joints, my severe tremor's,headaches and sickness, distended tummy, excessive weight gain or my pins and needles and numbness in my arms and legs. Wouldn't explain why I'm now on folic acid, collesteral tablets ,dehydrated, blood pressure borderline high. And my SATs are terrible oxygen as low as 80 and my heart rate is 36 bpm right up to 146bpm. He said my low heart rate is fine!? ( I always believed under 60bpm is bracacardia?) But if my heart goes above 100 ring him! I told him iv sent him about 25 pictures of my out of control SATs my heart beeing above 100. He said don't worry. Not to worry about me beeing out of breath!! Also my severe tremor! Don't worry.

So he is seeing me in clinic in 3 months time. Iv told him I'll loose my job of ten years in April. But said nothing. I told him iv had O.T in and provided equipment for me and how much it's helped. But didn't seemed fazed by my level of disability.

So that's it guys he addressed my meds my CA125 marker and blood tests and urine. But nothing else.

For me? I am not crying lol so I feel it's been a goodish outcome? With all your help I'd preped for three weeks. Been exhausting writing emails ect. Iv kept photo diaries ect. So when I went into the conversation I thought.." nikki you have done as much as you can. If this doesn't work then you know you have given it your all". At least he listened. He said some lovely things to me. A bit too over the top for him. (Which made me think he's been spoken too) lol .

But you all know much much more than me guys. What's your opinion on this mornings appointment?

Be honest say what you think. This may be as good as it gets? I don't know. Once again guys thank you. I wouldn't of gotten this far without you.

🤗💖🌈👍😁

80 Replies

you sound pleased with the outcome so that is good. I always find my doctors listen but ignore the points I am most wanting something done about and I get so flustered that I come away in a daze and then realise nothing is being done. hope the azathioprine increase helps. when I had it it did something to my taste buds and even now I can't enjoy the taste of chocolate.🤢

Nikkisrf
Nikkisrf in reply to suzannah16

Oh no not the chocolate.That's it not taking it lol.

Thanks for the reply. I had everything written down hubby helped me last night. But it was better than I expected. So today is a good day. 👍🤗

You did a great job and do did he. That is just my opinion. The rheumatologist didn’t just listen, he integrated what you said and developed a plan of treatment. He is secure enough in his knowledge that he can use the observations of his colleagues like the gynecologist.

My guess is that some of the issues like blood pressure and heart rate should be addressed by your GP and referred to appropriate specialists like a cardiologist or pulmonologist if necessary. If a problem did turn out to be lupus or Sjogren’s related, he would work together with the specialist. But first they have to know what the problem is. It sounds as if it did not sound like a lupus issue. That is good.

As for diagnosis, he may have been noncommittal because your presentation is unclear. A negative ANA occurs is less than 5 percent of lupus patients, not 30 percent. There is disagreement in the field but most rheumatologists said they would diagnose lupus with a negative ANA if the kidney biopsy was positive. With a negative ANA there would need to be very convincing evidence. But it probably doesn’t matter. They are thinking possible Sjogren’s which has a negative ANA more often. They absolutely know what you have is autoimmune. The rheumatologist is treating you accordingly. He wouldn’t do anything differently if your ANA changed to positive at this point. You may be a patient who has lots of other signs and other positive labs.

Hope the new medications help!

K

Nikkisrf
Nikkisrf in reply to KayHimm

Hi kayhimmYes I think so. The biggest hurdle was the message from the gyny. I was so surprised at his positive response honestly. I thought (knowing as well as I do) I thought he'd terminate the call. Very pleased at least he knows to monitor that marker for me now. I am diagnosed with sjrogens I was also at the same time 5 years ago diagnosed with lupus. However last March (after reading a rheumatologist paper on negative ana) he put a question mark over my lupus.

After my appointment last year I came on here to learn of this "paper" and that one of the top rheumatologist in the uk also wrote a paper saying to disregard this.paper as nonsense.

Since then it's been a battle to take the question mark away.

Anyway today was reasonably successful. So small victories one at a time.

👍🤗 Nikki x

KayHimm
KayHimm in reply to Nikkisrf

Maybe he just put a question mark there because he saw the negative ANA and wanted it repeated. It was likely positive when you were diagnosed. Sounds like you have been on steroids for a long time. As others have said, the ANA can go negative with treatment.

Better to go over the issue of diagnosis at your next appointment. A first phone conversation seems inappropriate to be agreeing or disagreeing on a diagnosis. He was right to focus on how you are doing and how he can help.

You will get to know each other. That is so important. He sounded like a very good and caring doctor to me.

Xk

baba
baba in reply to KayHimm

He totally ignored most of what she told him.

KayHimm
KayHimm in reply to baba

I have to disagree. If he adjusted her medication and put her on a DMARD, he didn’t ignore. A doctor cannot respond to things that are not in their area aside from sending you to appropriate person.

Is there a problem in his domaine that he should have addressed? Maybe that could addressed at the three month follow up.

Nikkisrf
Nikkisrf in reply to baba

He did baba. But small victories is all I can hope for at the moment. Xx

Nikkisrf
Nikkisrf in reply to KayHimm

Hi kayhimmI actually know him very well. Hence why I was so worried about this appointment lol. He diagnosed me with lupus sjrogens and raynaud's on my first appointment in 2017. Put me on treatment which worked really well all these years. Then last March I was severely ill 7stone skeletal no muscle mass in arms and legs very weak. I went in he doubled my steroids and told me how well i looked infact this is the best he's ever seen me. Then told me that he has read a paper today saying if my ana is negative then I don't have lupus. He then put a question mark over my lupus!Then wrote in the letter to my gp saying I looked "fine to me".

I got home that day and read on here about how many people were angry about this paper had been released. Then that a leading rheumatologist in the uk (highly respected) had released a paper saying all rheumatologists were to disregard this paper as nonsense. As they now know over 30% of lupus patients DO have negative ana results. Theses patients would of been positive at the start of lupus i.e an infection or accident ect. But can go negative at anytime.

So my rhyeumy read this paper and decided there and then that after 3 years of sucseful treatment I am NOW not lupus because of this one paper.

So hence why I was nervous about this appointment because if he says NO trust me it is a NO. He does not think.out the box. He is very " only I can make you better if I decide" which he told me from the start. So today as iv posted it's as though he's had a "talking to" "be nice to the patients" because the man I spoke to today is NOT the man iv dealt with for years lol.

He has had me on high steriods for a year. No help. My gp has asked numerous times for him to see me and he not responded. Iv got cushing's so bad that in January I couldn't go on I was so I'll with cushing's. I was so swollen my face was so big I could hardly open my eyes to see. I could barely move I was so swollen. So I got so desperate I droped down to 10mg over night. Yes I know I shouldn't but I was at the end. My rheumy apologized to me today for doing that to me and he'd never do it again to me. (Maybe that's why he was so nice come to think of it now). Anyway that's what I was so pleased he has altered my treatment at least. But not.much else. But for me it's been a small victory for.my health. But still the question mark hangs for.no reason other than ..he can! Not right atall.

Sorry it's a long explanation but it looks like you thought I'd met him for the first time lol I wished it was a new rheumatologist trust me.

Anyway thanks for your input. All veiws and opinions are much appreciated.

Nikki👍🤗💖

KayHimm
KayHimm in reply to Nikkisrf

Yes, sorry. I did think he was a new rheumatologist. The follow up with lupus patients in the UK does seem to be a problem in many areas. It probably has been in the US during the pandemic too. You do seem to have gone way too long for follow up considering you are on steroids.

Hope things shift for you. I don’t know what to make of the guy’s change in attitude. You do need to be seen after he changed your medication.

Best of luck.

K

KayHimm
KayHimm in reply to Nikkisrf

By the way, that test CA 125 test is not a rheumatologic test. I certainly never had it, and the explanation is it is used by gynecologists. I feel bad for you that you worried so much at his reaction. We all learned something! Maybe gynecologists have discovered something and you, as he said, have a good one who knew to alert rheumatologist because of significance.

Have a hot 🛀 tonight.

K

Nikkisrf
Nikkisrf in reply to KayHimm

I will lovely 🥰 I will. I'm just glad it's over for three months lol. Thanks for.all your help and input. Xx👍🤗

Melba1
Melba1 in reply to KayHimm

Hello Kay, just a quick one on ANA. It’s permanently negative in 5-8% of lupus patients (although probably a lot more as many remain undiagnosed due to some rheumys not understanding seronegativity)

BUT the 30% is now quite recognised amongst top rheumys and research community as being the proportion that have a fluctuating ANA and that can become negative (often through time and severity with the disease). There are several recent articles where this (around 30%) of established lupus patients had a negative ANA (but you’re right most - not all- would have been positive at some time) x

KayHimm
KayHimm in reply to Melba1

Hi Melba1 -

I do remember someone posting a good article about the fluctuation in ANA. The figure of 5-8 percent concerning ANA negativity looks high from at least general articles I have read. The Johns Hopkins site says less than 2 percent. They can often find a reason for a negative ANA like cross reacting antibodies. I think rheumatologists agree with diagnoses - even as difficult as these are - more than we think. They just use different words to describe less clear cases. As I said, when the new classification was accepted, most rheumatologists would diagnose with a negative ANA and positive kidney biopsy. So the diagnosis would be undifferentiated connective disease or lupus-like autoimmune disease.

Rheumatologists all train at academic centers where they have a lot of exposure to lupus patients. I find it hard to believe that any rheumatologist hasn’t established their position on ANA negative lupus. This would come up over and over in training. It is a major issue that has been wrestled with since the developmental of the test.

It would be interesting to know how often the ANA is negative in a patient when in flare. If it is often, that poses a bigger problem for diagnosis.

I have heard many people here read about the possibility that a negative ANA could still mean they have lupus and be angered at the rheumatologist for telling them they don’t have lupus. Usually it was not just that one test but the whole picture. If their presentation looked like lupus and they had a negative ANA, they would watch, or go ahead and treat, or biopsy tissue to get a handle on things.

I am more concerned about the rheumatologists who aren’t reasonably sure whether the patient has lupus before the fancy blood test. A good history and physical along with recent CBCs should clue a good rheumatologist in.

Just a different take on the whole matter.

Xk

Melba1
Melba1 in reply to KayHimm

Yes whole picture is key.

The latest research is that ANA is useful in diagnosis but should never be used as monitoring/ to inform treatment decisions as it is felt to not be related to disease activity in many patients - and a lot of the long term more sick lupus patients ANAs went negative over time.

The problem is that the less knowledgeable rheumys follow a tick list and don’t listen to patients symptoms so diagnoses - and often treatment - are delayed/ inaccurate.

I worry about how many negative ANA patients are undiagnosed/ misdiagnosed out there. I’m sure there will be better blood tests in the future for all the many lupus phenotypes but sadly not yet! X

KayHimm
KayHimm in reply to Melba1

Yes, exactly. And I just read there are clear positive ANAs that are being missed because of a certain nuclear antibody that has not been included.

Being a good rheumatologist is as much art as science. Related to your point, in a discussion with my doctor about how rheumatologists don’t get as worried about fitting autoimmune patients into a box as the patients do, he said most of his second opinions come from patients who have seen « not so good or not confident » rheumatologists who have gotten so bogged down in the diagnosis that they have neglected to treat the patient. I thought that was interesting. As you say, it causes a delay in treatment.

One problem is that the symptoms of lupus can be so vague. So the rheumatologist has to have a way to understand (and yes, dismiss) certain symptoms.

Do we need better testing of autoimmune diseases! Think of the misery that would be prevented if we had tests that could pick up early disease. My only positive test was for syphilis. 😩 Tests were really bad back then.

Reasonably good result I’d say Nikki ,yes you still have things to work on with him but at least it was positive progress today so you won the battle today leave the war for another day,keep doing what your doing and well done.xx

Nikkisrf
Nikkisrf in reply to Diddlydot

Thanks diddydot that's kinda how I feel. I got a bit further on. To exhausted to win a war right now lol. Thanks for your input 👍🤗

Diddlydot
Diddlydot in reply to Nikkisrf

That’s the plan ,one battle at a time then rest, conserve your energy that’s the important thing and allow yourself that feeling of victory now and again, that’s what I do and I’m nowhere near as effected as you so well done.x

Melba1
Melba1 in reply to Nikkisrf

Wise words from diddlydot I think.

Sounds better than expected but still some outstanding areas not addressed at all. A camel 🐫 !! Glad it was a nice comparison 🤣

Pleased he listened about CA125, I have that on my records as an inflammatory marker now but it took a few years for everyone to understand and I still have the odd dr panic when they see it and send me for ovarian scans (although I guess they’re right ahd we shouldn’t always think it’s just the lupus increasing it as might one day be doing it’s actual job as an ovarian marker - my gynae said the way they can tell is if it goes down between flares as it would just go up and up in cancer).

Can you see GPs for your heart rate? X

Nikkisrf
Nikkisrf in reply to Melba1

Hi melba1Very wise words from diddydot 👏 I am taking the positives from it. At least iv not got to go back up the steriods. I don't think I could take anymore of that. And I will work on the outstanding stuff when I go next time. (After all my hands have been painful for over 3 years) so another couple of months won't hurt (well not much) lol.

Hmm the 🐪 lmao. Yes I did understand him it's an in joke /complement with him. But was nice of him to notice. Because I am like that. I am stoic determined. I have given a little over the years as iv goten worse. But now....now it's the straw that broke the 🐫 back lol. Seriously now I know I am really restricted with my health about to loose my job needing aids ect. So I have given in alot now to needing help.

The CA125 test yes I am over the moon with him accepting this. And yes that's totally it. If it was ovarian cancer it would of gone up and up. But mines risen fallen a little then risen again. So my gyny wow I wish I could hug her honestly. Great woman!

Yes I am going to see dr about my heart rate breathing ect( Even though the dr told me wait until I see rheumy lol).

But hey it was a good outcome

Thank you so much for your support. Melba 1. 🥰❤️🤗👍

Nikki, I think you should feel very proud of yourself. Also, the gynecologist's findings challenged him to look deeper. Obviously, he wants to be the doctor who is right as he seems egotistical. This forces his hand to take you seriously. I am so glad that although not everything went as it should, some very major points are being looked at including the urine tests. I see this as a victory on your way to getting some real care.

Healing hugs.

Nikkisrf
Nikkisrf in reply to Pumpkin2009

Thank you pumpkin. I totally agree with you. He is egotistical that's the unfortunate thing. He's a very nice man. But very masogonistic and egotistical so it's hard to get past those unfortunate traits to help me. But honestly THANK GOD for that gynaecologist. I could hug her so tight right now. (If I was allowed) lol.Kind regards Nikki.👍🥰🤗💖

Hi Nikki - i hear your pain! My rheumy had diagnosed me 3.5yrs ago as mod SLE and probable Sjogrens and behcets but then changed it to “lupus like syndrome” and really dummed everything down by letter!. I’m extremely distressed about this as has affected all my clinician responses as open to many teams. Re the complement 4, please read my last post as it explains everything... there are a few links to medical articles on complement and lupus.. i have low c3 too - do u? And how are your wbc’s in particular neutrophils? Why u under gyny?Donyou mind saying? I have severe atrophy but rheumy never lists this in my review letters or referral to dry eye doc recently as my sicca is so bad eyeballs sticking firmly to eyes at night again even with Hylo Night and tons of carbomer all day. Hope that helps... and I know how upsetting and exhausting all this is, just trying to be heard. Big hug x

Nikkisrf
Nikkisrf in reply to DJK99

Hi dk99I will read your post tomorrow lovely. I'm a bit wacked now.lol. my C4 is low and on a downward curve. Whatever that means. I get your distress at the dumbing down. I'm about to loose my 10 year job to this illness come April. I need to claim for p.i.p to help out. Iv got no chance. They will see the question mark and just say oh yer right she's puting it on. The nightmares iv seen on here for p.i.p with people far worse off than.myself and they don't get p.i.p. so this question mark well I am to scared to even try and claim. The form is exhausting in itself. Hubby and I will just have to manage somhow. The stress is horrible. I am morning the loss of.the.old.me and the loss of my job I can't deal with p.i.p as well it's just to much. I don't suffer with anxiety I'm quite matter of fact and determined. But now I suffer with crippling anxiety. I just can't do a p.i.p claim with that question mark hanging over it.

I was seeing a gynaecologist because they told.me I had ovarian cancer and possibly bowel cancer. So 2019 I thought was my last Christmas so I made it great for hubby kids and grandaughter. Then I lost 4.5 stone was 7 stone skeletal no muscle mass in arms and legs and my rheumatologist said it's the best I have ever looked and I looked great. I honestly was speachless. I just said your joking right. He wrote to my gp and said I looked fine to him. Even.my gp was shocked at his comments about me. My gp has watched me decline lol

So after a year's worth of my CA125 test (ovarian cancer test/marker) beeing high then doubling. Lots of scans ect. My gynocologist said you know this is YOUR inflammation marker. Why is your rheumatologist useing your inflammation markers when you're on treatment of course your markers will be fine. However you do not have ovarian cancer. So this is YOUR inflammation marker your rheumatologist should be useing. He should know this so please tell him. So today I did. And he took it well because he said only a very few drs know this CA125 marker your gynaecologist is very very clever dr!!! But if he already knew this why didn't he test it? Comes to mind.to ask him lol.

I really appreciate you sharing djk99 thank you so much. I feel so.less on my own now. Thank you. As for everything else you have mentioned my rheumy hasn't even got that far. Iv asked previously about.my eyes ect he just ignores my questions.

Big 🤗🤗🤗 xx nikki

Yaay Nikki👏

This sounds a very positive telephone appointment & you have a clinic appointment in 3 months.. my guess is, that is the important one🤞

I do agree with you, he probably just skimmed over your emails by the sounds of it & won't be pushed into diagnosis, he needs to see you in person.

When in clinic he may be levered into diagnosis with all your symptoms bloods markers etc etc.. but may I suggest letting him lead into this & not asking him directly. I hasten to add.. this is only my opinion & I'm sure you will do what you feel is needed at the time.

Haha I'm smiling at your comments about him 'being a bit over the top' but we all deserve to be treated with respect & kindness as they would.

At the end I always say thank you for you help.. even if I am seething inside!!

Well done Nikki you have 3 months now to add to your portfolio

Take care

& best of luck for your job situation🤞

💕💛💕

KayHimm
KayHimm in reply to daisydayz

Couldn’t agree more. These telemedicine appointments are a blessing during the pandemic but do not replace in person appointments for a patient like @Nikkisrf, especially on a first visit.

K

Nikkisrf
Nikkisrf in reply to daisydayz

Thank you dayzdays.I agree with you. However I don't hold much hope for the face to face. When he saw.me last year at 7stone and skeletal and no muscle mass in my arms and legs and he said it was the best he had ever seen me!! Every time my 28 yr old son saw.me he would cry and hug me because I looked like I was dieing lol literally.

So in 3 months my cushing's will have gone down i.may have lost some weight so he will just say wow you look so we'll. Yes he says it to most of his patients lol.

Hey how I am pleased to be getting alternative treatment so I am happy today. Thank you for your input dayzdays. Given me the strength to do it. And yes I'm keeping my diary daily. 🤗👍💖

daisydayz
daisydayz in reply to Nikkisrf

Nikki I can relate to your weight loss & looking skeletal. They thought I was starving myself until they were proved wrong when I was admitted to hospital for it & they saw how much I ate!

Then was told stress related..but I am more stressed now than ever & my weight is steadily going up.. so wrong again!

They don't really have answers for us do they? so they have a stab in the dark rather than say it is probably Autoimmune related.

Stay strong & positive Nikki three months will soon pass.

We are all routing for you🤞💕

You absolutely could not have done any more. You can feel really proud of yourself. He was never going to agree with everything, but it sounds like you got him to hear at least 60% of the information and reading between the lines more importantly hear you- that is an amazing achievement. 3 months is a much more appropriate follow up time. It’s good he’s checking you kidneys & having another look at your bloods too. I’m afraid I don’t know about C4 falling but i think the other things you can always return to in future. TBH I had lots of questions like that for my very good consultant & she also said lots of them weren’t related to lupus or were nothing to worry about- in a nice way. I hope you can find some way to treat yourself tonight. 🙂

Nikkisrf
Nikkisrf in reply to panther50

Yes panther. Sleep!! Lol lol. Thank you for your opinions they mean alot to me.Nikki xx👍🤗🥰

Ahah.. CA125 can be elevated in lupus. So the gynecologist did the test for her own reason - not your autoimmune disease - but knew it could also be elevated in lupus.

Maybe he will explain this all to you at your next appointment.

Keep us posted.

K

Hi Nikki Firstly thanks for your kind reply earlier. It is great to hear you had a "reasonable" interview this morning and you feel things are moving in the right direction -- well done for your courage. From what you have said I am fairly sure we are under the same rheumy. There are so many similarities in your symptoms and my wife's -- loss of weight, Sjogren's, Raynaud's, fatigue, chest pain etc AND it also took quite a lot of pressure from the other consultants before moving from "possible lupus" to a definite diagnosis. Even when another consultant pointed out the dsDNA was over 1000 it was not taken that seriously. Being kind, it could be that he is reluctant to apply that SLE label to us as it can carry an unwanted stigma and fear too. Odd isn't it for us to be actually wanting a diagnosis of a disease that has no cure -- but we do want to know what is causing so many issues. At least then we can move forward and tackle it head on, rather than being in the doldrums and having to wonder what is going on. I will end there, as you must be very tired after so much activity today. Have a good rest and best wishes.

Nikkisrf
Nikkisrf in reply to BeeManShrop

Thank you. Yes we.probaly are under the same one! It's.not I want the diagnosis. But I can't accept being diagnosed for 3 years for him then to take it away on the say so of a.paper that was almost immediately slated by a top rheumatologist in the country and told to ignore this paper.But hey how. Yes I am absolutely exhausted lol. But thank you again for replying. It means so much.

Nikki👍🤗🤗💖

I wonder if the nurse he brought in to witness what he said to you, said something?

Hi Nikki I am delighted for you that he actually listened to some of what you said at least. You did so well, I know how hard it is when you have a history with a Consultant who is egotistical. Regarding his change of attitude I had a Rheumatologist for five years and everytime another Consultant wrote to him expressing concerns about the possibility of Sjorgens or Crest he would say let’s just concentrate on what you do have not on what you might have shall we? My husband once commented that he was inconsistent and gave examples of him saying one thing to us then writing something completely different to our GP. He got very angry stood up and pushed his chair away standing with his hips on his hands and telling us to go elsewhere if that is what we thought. We were shocked. The next appointment there was a lady sat in with him with a notebook. He had a complete personality transplant he welcomed us , shaking out hands, smiling head on the side listened to all we said then said I believe that you have had Bechets for 25 years, you have Lupus and APS and Raynauds. We were gobsmacked. Maybe your Rheumatologist had someone listening? Whatever the reason I am so pleased for you xxx

Hi cecilyOh my god your story sounds just like mine but in reverse. The first time I saw him he was lovely. Told me I have lupus and sjrogens and raynaud's started the treatment plan. Then the second time I saw him I just happened to question him about the level of treatment and is that level high enough......omg I wished I hadn't asked. I did honestly ask really nicely it's because id read something on here a paper not someone's oppinon. Oh my he kicked his chair back really angry (same as you) then went and fetched his nurse to sit in and take notes.

"So I understand he is in charge of my treatment not me. He is the specialist only he can make me better or not" ect ect he went at me for about 10 minutes. Made me cry. I was to scared to say anymore incase he stopped my treatment. I looked to the nurse for help (she was not taking notes btw) she looked as scared as me. Lol.

Then last year I was so dreadfully ill 7stone no muscle mass in arms and legs. Eyes sunken black marks under my eyes. And he tells me "so you have stopped bleeding internally now?" I said for now yes but the gp wants to know if it's lupus related. So very annoyed"he said look let's concentrate on what's wrong with you now shall we and youv stoped bleeding internally and Nikki you look lovely, you look the best iv ever seen you so let's double your steriods give you some energy so you can go back to work if you really want to"

Honestly it's a wonder I didn't drop off the chair. Yes I did want to go to work because I'd been off for nearly five months so I was getting worried.

Looking back now there was no way I would of been fit for work in two weeks anyway. Thank God for lockdown the following day.i was still only nearly 8stone by August last year even with the steroid weight. Then September came and everything stared again but in reverse. Iv put on 5stone in 6weeks!

I can't believe your rheumatologist ignored all your signs too. Betchets aps,raynaud's and Lupus. Oh wow. You have suffered all those years lovely. I am so sorry for your pain suffering you have had to endure. What a story you have lovely.

It does show one very impressive and important thing about us lot on here ya know. We may be suffering untold pain exhaustion ect ect

But we are determined, unrelentingly,strong willed, and NEVER GIVE UP. 😂 😆

I think that if rheumatologists read our site....they may actually be a tad scared 🤣🤣🤣🤣🤣

Thank you for your opinions and help and words of comfort lovely.

Oh and good for your hubby 👏👏👍👍 you keep interjecting for wifey. My hubby has not been allowed to anything for this year because of covid. So go hubby 😂

Nikki xx

I know Nikki, it is truly scary when you get a Rheumatologist with a God complex. I had a new one the year before last who doubled my Hydroxychloroquine and I developed macular oedema. I still have a tiny bit of fluid behind my eyes now. When he saw me ( an urgent appointment made my the Rheumatology nurse who was worried about me). He said I have seen people like you before, always sick but never anything wrong with them. He said “I am straight and I am telling you now the only thing wrong with you is Fibromyalgia and Hysteria”. I could not speak I was horrified, shocked beyond belief. My carer was with me and she tried to tell him how much pain I was in, how she was at the opticians with me when they said my eye might perforate. He interrupted her and said “ change your optician”. So you see now I have not got a Lupus diagnosis either. I have seen two others since, one said UCTD the other MCTD both said no Fibromyalgia. I have spoken to my new Rheumatologist on the phone for 40 minutes. He was interested and actually apologised that I have had so many Rheumatologists disagreeing about my condition. He said we will start from scratch when I can get you into clinic. I broke down I was so relieved. I have some hope now and so do you. Onwards and upwards lovely xxx

Cecily!!!Oh my God! That is abominable! I am so disgusted on your behalf. What a disgraceful man.

I am speechless. 😠😡

I'm so glad your (fingers crossed) going to get it sorted now though. What a trauma. In a weird way though that's why I feel so fortunate to of found this site. I don't feel like I'm on my own now. Before this it was a living nightmare. Hence why it took 14 years to get diagnosed because things like mine and your experiences would happen then it would take months before I could pull myself back together. To get enough courage to go fight again. It is so so wrong that we have to do this atall. We should be able to.put ourselves in the hands of rheumatologists and feel safe secure and emboldened in the knowledge that they know what they are doing and look after us. 😠😟 So wrong. We spend months years of our lives distressed working, researching and gathering medical knowledge to help our own medical problems.

I wish you all the luck in the world for your next appointment. I shall have everything crossed for you my lovely ❤️

Take care lovely❤️👍🤗🤗

Nikki xx

Yes that is so right Nikki. When my first ever Rheumatologist suggested that I had read about APS on the internet so thought I had it I was outraged. I stood up told him how dare he patronise me and said I cannot work with you Doctor and left. Eleven years later a Rheumatologist tells me I suffer with Hysteria and I cry for weeks and do not even make a complaint. I am worn down with it. You are right that we should not have to fight but sadly we have to. I hope your next appointment goes well too Nikki xxx

Have you had your thyroid levels checked, it could be causing the tremor, high heart rate and breathlessness?

Nikkisrf
Nikkisrf in reply to Michellear

Hi MichellearI have a slow thyroid and on thyroxin already. That was the first diagnosis way back years ago. But I will ask if my thyroid levels have changed any. So thank you for that Michellear.Thanks for the idea. 🤗👏❤️

Michellear
Michellear in reply to Nikkisrf

Hi Nikki,

I really feel for you. I have been trying to get treatment and a diagnosis for what I believe is Lupus.

I was told 3 years ago I have fibromyalgia, symptoms progressed and asked to see a different rhumo. After waiting 6 months spoke to him on phone Jan 2020, he dismissed all my symptoms and didn’t listen 5 minute call cut short.

6 months later my GP asked for an urgent appointment as I was having a really bad flare which left me in severe pain for 6 weeks and unable to work.

On the second call he cut me short again, I had emailed pictures and a detailed diary (surprisingly he hadn’t read it) he said I needed to be seen in person!

I later received a letter from him in which he made no reference to my symptoms and instead stated I said I had eczema which I didn’t. I believe he was talking about a different patient as all the information was incorrect even stating I was teferred from a different hospital.

I complained to pals in October 2020 and asked to see DR Kaul. Finally I have an appointment for May 2021.

In the meanwhile I was sent an appointment for March 2021. The Rhemo believes I have psoriatic arthritis and dismissed all my other symptoms. I was told my ANA of 1:80 speckled was a weak positive and likely false positive.

I cannot wait to see Dr Kaul, I believe he is a very good rhemo and experienced in his field and hope I will finally get the treatment needed.

Also been suffering with hyperthyroidism since Jan 2021 all the symptoms sound similar to you. It’s not nice.

Good luck and will keep you updated. Xxx

KayHimm
KayHimm in reply to Michellear

Michellear -

Did he not put you on medication after he diagnosed psoriatic arthritis? You were right to complain. You did need to be seen in person urgently.

Whatever the diagnosis, you need treatment. Best of luck with this.

K

Michellear
Michellear in reply to KayHimm

Hi Kay,Many thanks for your message. No definite diagnosis as yet. The rhemo believes it might be psoriatic arthritis, sent for MRI, X-rays and more bloods and hopefully will get an answer at the next appointment

Thanks xxx

KayHimm
KayHimm in reply to Michellear

Glad to hear you had imaging. I know nothing about psoriatic arthritis except that it is a serious autoimmune disease that needs treatment.

These illnesses can overlap. Blood tests change over time, so you may know more soon.

Xk

Nikkisrf
Nikkisrf in reply to Michellear

Oh my god Michellear!I can't believe it! Well unfortunately I can but... God. I know when I read the letter to my gp he put "she looks fine to me" even.my gp was shocked because he's seen me ditiorate before his eyes. I'm so glad you have another rheumatologist. Good.luck with him I hope you get your real diagnosis. I have everything crossed for you in may.

That's exactly what I was going to do this time round was contact pals. Thankfully I haven't had to ...yet but I will if I need to because I have had my gp,o/t, social worker, friends ,family and now this site To back me up and make me realise that this is not on. It's not that I WANT to be diagnosed with lupus. But I do not want it to be diagnosed then years later taken away. I do need to be diagnosed with a name. And now I'm at the point of looseing my job through it. Practically and financially I need that to be there. As iv said applying for p.i.p is almost as hazardous as getting a good rheumatologist. The horror stories I have heard about p.i.p. can you imagine me applying and there's a question mark on it? Perfect reason for p.i.p to turn down.my claim. They will think I am putting it on. These rheumatologists don't realise the huge impact it can have on our physical,mental, emotional and financial wellbeing.

Good luck with dr kaul.

Have a lovely day. Michellear 👍🤗🤗🤗❤️

Michellear
Michellear in reply to Nikkisrf

Hi Nikki, I am shocked to hear the lack of treatment and support you have received.

It’s hard enough dealing with illness and to receive no answers or care/treatment makes it even harder!

Definitely contact Pals if you’re unhappy. Paul Howard from Lupus Uk gave me a list of recommended rhemo’s under NHS that are more open minded than your rhemo and the majority, that look at your symptoms and not just the blood tests!!!

Re PIP make a diary and explain how your symptoms affect you. How if you’re able to walk on a given day the affect it has on you and whether or not you can manage the same task repeatedly.

If you can carry out a task but are then unable to repeat that task this would be taken into account.

PIP is awarded on your ability to carry out personal care etc and NOT your diagnosis.

I used to work for CAB and another charity agency. Please get the GP to write a supporting letter or complete the page near the end of the PIP form. If you are unsuccessful request a mandatory reconsideration. And if that’s refused lodge an appeal.

Hear of so many people getting their decision overturned after they’ve lodged an appeal (but before attending the appeal hearing).

Good luck and have a good day xxx

Nikkisrf
Nikkisrf in reply to Michellear

Thank you lovely that's lots of handy to know information. Thank you so much. 🤗🤗👍❤️You have a great day too.

Nikki x

Hi Nikki sounds like your appointment was both good and bad - I had to laugh when he referred to you as a camel 🐪 how funny but a compliment non the less- great about the gynaecologist with the marker . I’m so sorry that your losing your job in April that must be very hard for you - sending you hugs 🤗💕

Nikkisrf
Nikkisrf in reply to svfarmer

Hi svfarmerThanks for your comment. Yes he can be lovely and funny when he wants to be. The gyny thing is just a game changer for me. And as for my job...well it's a bit like a death. So I will have to morn it. I have been there 10 years ya know. Like iv had to morn the fast go geting 100mile an hour person I was too. But I will get past it. I just want to feel a bit better than this last year. Perhaps I can get a little part time job if I get a little better who knows hey?

🤗🤗👍❤️

svfarmer
svfarmer in reply to Nikkisrf

I know exactly what you mean - I had to give up my job 4 years ago due to lupus, it took me a long time to adjust and accept I couldn’t run around like a mad person anymore - but my life has changed for the better , we got a dog who then had puppies last year so we kept one and these 2 fur babies make me smile every day and are such company - I’ve also learnt that when my body tells me it’s exhausted then I must rest - again it took me along time to except this - your get there - this is a lovely group so feel free to vent - we also post pics of our pets and crafts so it’s abit of everything on here, it’s not all doom and gloom. Hope you have a good weekend 💕

Nikkisrf
Nikkisrf in reply to svfarmer

Thanks svfarmer. I love this site. If it wasn't for stumbling on here I wouldn't know what I do, I wouldn't feel the way I feel, honestly this site may well of saved my life.. literally.

I was in a very dark lonely lost state when I came on here. Then I read things and thought wow...I'm not mad! What I'm feeling (pains thoughts feelings,blood tests ect) they are true they are validated. There are thousands of other people going through it too. I felt validated as a person.

And yes I have two (mad jack Russell's. They have saved my sanity lol. They lie with me when I can't move off the sofa. They follow me everywhere (as they know before I do). I'll put a pic up next week of them.

They save us those little fur baby's don't they.

Once again thanks for your kind words and advise.🤗

I'm going to go sit in the garden this weekend and watch hubby build my arbour with seat. He brought it for my birthday next week. So I am looking forward to another place to sit in the shade. Lol.

You have a great weekend too. 👍🤗

Nikki

svfarmer
svfarmer in reply to Nikkisrf

How lovely thats is your Birthday next week, you must post a picture of your new seat - my friend has a little Jack Russell they are such lovely little dogs - am looking forward to seeing a picture of them ❤️

This seems to be a worrying trend- removal of a previous SLE diagnosis. Happened to me (in the past now corrected) & just happened to a friend of mine who was told “it had gone away” and that she should throw her meds away. No blood tests done. I’m aware of at least 3 others through this site with same story. I can understand the reluctance to give a life changing diagnosis before being certain, but lupus doesn’t just go away. If they remove it then they are challenging the original diagnosis/blood tests consultant’s judgment at that time. This would need to be backed up.I wonder if the paper you mentioned Nikki was the cause of this change of thought (though this happened to me back in 2019). I would have been glad not to have SLE but I was concerned without this on my records, I wouldn’t receive the monitoring necessary or if I was in hospital ever it was important they knew. I also 100% trusted the very experienced consultant who diagnosed it. I can’t help think it’s about budgets & the cost of outpatients who can never be discharged.

Hi Nikki Me again -- other similarities with my wife -- in May/June last year she was in hospital for 6 weeks in total. V poor comms with the medics --no visiting (Covid), ward would not answer the phone, no proactive feedback whatsoever. Wifey could not use her mobile (I now know she was so ill she could not use it) eventually she was told she was to be discharged -- I pleased (naturally I think) I thought she was now better and able to come home so I sent an email via PALs asking some questions on how I was to manage e.g. maintenance of feed tube, (she was not eating anything by mouth) probability of falls (the only time the hospital rang me was when she had fallen!!!). After 6 weeks I was invited to see the specialist consultant who threw my email on the desk and said I had to think differently --- a) she was much too weak for ICU treatment, b) We should consider making out a Respect form so that wife would never be readmitted to hospital and c) We should make out a DNR form -- quoting the consultant "you do not want a junior Dr to be bouncing up & down on her chest" (I know exactly what a DNR is as I am a first responder!) suddenly the penny dropped that they were sending her home to die -- it broke my heart. From then on I have been fighting to prove them wrong -- and now 9 months later, we are winning!!!. My wife has gone from not able to walk at all without a Zimmer to walking several hundred metres (with a wheelchair for support). When she left hospital she could eat nothing and could not even open her mouth wide enough to chew -- she lived on Complan for 6 months but now can just eat small portions of proper food, her weight has increased from 53Kg to 56Kg so things are slowly getting better. Re -- C4 wife also has low C4 at 0.12 for last 4 months -- 0.05 before that. I am not a medic but I understand that when an autoimmune disease (eg lupus) is active it will reduce the proteins C3 and C4--- these have to be considered in conjunction with other markers ESR & CRP etc. PS -- After all that has been said about said rheumy -- did you know that he was off work for a number of weeks last year with Covid? This does not explain his behaviour but goes to show that consultants are human and sometimes make mistakes or errors or may be under the weather or ill themselves.

Best wishes -- hope you feel better today.

Nikkisrf
Nikkisrf in reply to BeeManShrop

Wow how Interesting! Yes iv read the c4 thing. Wow just oh my god. Exactly he told me yesterday he noticed my last bloods......last march my C4 was on the downwards curve. Well if he noticed...why not do anything especially when I was so I'll and 7stone!! Duh. I am so sorry for your wife's suffering. But sounds like you being a first responders your the right man for the job!! Lol you go get him!. Yes one reason last year's was they told me he is very very ill so I can't see him. I did (quite happily) say oh it's ok I'll see anybody lol. But said no it's best I see him!! HereWe shall carry onwards and upwards. We will get there. Tell your wife she has a great husband behind her. She is very lucky.

I feel shattered today lol. Just the after affects of the stress I think. Just resting today. Bit out of breath and hearts quite fast. But I'm phoning go next week to try and get that sorted. Fingers crossed hey?

Have a lovely weekend.🤗🤗👍

Nikki xx

Wow what an amazing story. We put in place a DNA for my mum who was 84 with Alzheimer’s & many other conditions (I had Power of Attorney) I thought they had to make it very clear that’s what you are doing. We had discussions with Drs about best interest, quality of life etc. This doesn’t sound the case with you wife at all. I don’t really understand someone being too weak for ICU, that’s where the weakest people are, again you’d only do that with someone very elderly or with a terminal condition. Thank goodness you were there to fight for her. This consultant is only human and I’m sorry to hear he had COVID it can’t have helped, but these are very concerning judgments he’s making. The hospital had a responsibility to provide cover for him if he was ill. Nikki I think he put you at risk with the steroids and by not checking your kidneys. It sounds like you have him back on track now. BeeMan has spoken to PALS so you wouldn’t be a lone voice if you raised concerns. I suppose there’s an argument that if we don’t speak up how will the hospital know there’s a problem.

Wishing you both the very best & that you get the answers you need. xxx

Nikkisrf
Nikkisrf in reply to panther50

I totally agree panther.However as you probably know (unfortunately) I like beemanshrop don't really want to rock the boat until we have too. (We have the same health care shall we say)

Honestly at the moment I need treatment and for him to remove that question mark over my lupus. Because I'm going to loose my job and need to apply for p.i.p. I'm sure you have heard the horror stories about claims for p.i.p. (similar lies and god complexs to same as a small few of the rheumatologists really) so as you said in previous posts. We ask for a second oppinon....but we end up with biased (collegues) given the identical opinion anyway.

I was personally thinking (why I did a pre emptedd Post on here) he will say nothing wrong shouted at me for dropping 10mg of steriods ect ect. I was right at the end of my tether and I WAS going to PALS. But then that happened.....I'm shocked relieved. But now iv got the very good possibility (C4 beeing low and my CA125 marker) that he will concede at my 3 month appointment and say "I'm sorry nikki iv made an error and I have removed the question mark over your lupus diagnosis.

However if the next appointment is bad like I fear it will be. (It's his pattern) I am absolutely going to PALS. My husband has been pushing for me to go to the newspapers to tell the world this goes on all the time. He is so angry for.me . Watching me suffer and no one helping.

I don't think I'd go that far bless him. But I will not go another year like iv just suffered for nearly the past 2 years. If beemanshrop needs back up I would be more than happy to write down my experiences for him m to add to his case. I was.told last year by 3 nurses iv got a DNR on my record. I will not be given a ventilator if it get covid as "I'm not viably worth the treatment and manpower" as I don't stand a chance of beating covid!!!! I'll be made comfortable as possible with lots of morphine and left to it!!

Yes I know. But iv been so I'll it was just a another thing. Didn't even faze me at the time. I have a DNA at 48!! Wow. I was more concerned for hubby who wants to be with me. Wev been married 33 years never a day apart so it would crush him. I didn't tell him either. He over heard a nurse in our garden taking my bloods on the decking. He went crazy. Bless him. Our health care has a lot to be disired. Beemanshrops has my support if he needs it. Much love to his wife.

And you panther.

Have a lovely day both/3 of you if your reading mrsbeemnshrop lol

Nikki🤗🤗🤗🤗👍❤️

This certainly got us talking! The ANA question- how can any of the statistics be right when there’s so much variation in whether they say we have lupus or not? Even when you get a diagnosis(as many of of us have found) it can be downgraded. If they measure how many patients have negative ANA against those who have lupus it will be distorted by the fact those of us with lupus have then also wrongly had the diagnosis removed. It would look like -ve ANA= no Lupus! Seems a bit like those lateral flow tests, that if it’s positive it may lead to a lupus diagnosis but if it’s negative you can’t rule lupus out. I wonder if you printed out the evidence disproving the paper he’d read about negative ANA if he might read it and change his view?

I think it’s negligent to leave someone on 20mg steroids without a follow up. I think there’s evidence it was negligent in your GPs repeated attempts to get him to see you. The result was you developed Cushings. You certainly have grounds for a successful complaint. I would seriously consider it or speak to PALS. However, we all feel making a complaint is very difficult when they are in control of our treatment (which we desperately need) in the meantime. As is changing consultants. I think you’ve done brilliantly with a system that sometimes feels very rigged. I wish there was a concrete test for SLE as the subjective part leaves us even more vulnerable to consultants like this. I also wish it was much easier to get an unbiased second opinion quickly.

C4 -I remember now that a lovely Palestinian consultant at Louise Cootes described it like this: everyone produces dead cells (DNA) these need taking out the body like bags of old rubbish 🙂 C4 is what takes the rubbish out so in people with lupus when it gets depleted this is an important indicator of lupus disease activity. He looked for it more than anything else, i believe it’s another strong lupus indicator. Perhaps this too will make him reconsider.

Nikkisrf
Nikkisrf in reply to panther50

Good morning pantherYes the ana thing drives me mad lol. I honestly do not think he would read the leading rheumatologist paper discrediting the other theory. Because he doesn't like being proven wrong unfortunately. To much God complex. (However I have said to someone on here. He IS a very lovely person) just a horrible masogonistic, egotistical rheumatologist. Unfortunately.

I too think it's negligent leaving me on the steriods like that. And NOW I think he knows too. Which is why I think he's been as flexible as this appointment. I think he is worried I may report him. (I was going to PALS if it went wrong) after what he's told me. If the 3 month appointment is bad ( one appointment he's lovely then another one he's awful shouting at me ect) then I Will be going to PALS and reporting the whole thing for the past 5 years. He has given me cushing's. (On top of everything else). He's admitted he knew about the CA125 marker from gyny and how clever she is! Well when I went last march to him 7stone gravely ill weak skeletal with several transvaginal scans and c.ts under my belt (all clear) but high CA125 results. Why not tell me about it then and monitor it?.

And then to top it off he tells me "yes this time last year I noticed the blood test before (which was in may 2019!!!!) That your C4 is low and on the downward curve!!!!??

What the hell. So now 2 days on (time for my slow brain ,brain fog and all my friends, family and of course many of my lupus family pointing it all out to me).

Hes had all these obvious (to him at least and a gynaecologist) signs and he's what? Ignored them? Because why? Back in March 2020 he reads some paper (not even by a respected or leading rheumatologist) and decides not even an hour later he's just going to make a snap discion (no investigation,no even waiting to see if other respected or leading rheumatologists discredit the paper or agree with it either) he sees me less than an hour later and his god complex made worse by me (saying"surely you can't just undiagnose me like that or put a question mark over it?l) so he gets annoyed and just puts the question mark anyway. With no thought to the affect this will have on me emotionally, financially and as we know now physically! Not to mention all my GPS constantly saying nikki we need to get you to your rheumatologist it's him who can really help you!! Duh!! I am in angry faze now. (Can you tell lol) first day was elation, yesterday was utter relief and exhaustion. Today I am just plain angry this could of been done a year ago. (Not for me) but my poor husband has suffered looking after me and working nights too. My family have been worried sick my boys crying thinking I am dieing and my beautiful little granddaughter seeing me blow up be shiny red, to out of breath to dance and be silly with her. All that suffering was for nothing. He knew ,he had the power to change me (or at least monitor me) he just shuved me with high steriods and sent me away. Greer

And the C4 panther I get that too now. Some lovely person on here sent.me several links to the medical papers for it. I get it now. So basically my body hasn't been having the trash took out for about 2years? Lol so sort of poisoning me? On top of cushing's lol. I think that's it? I might be looking at it wrongly.

Oh god panther ya gotta larf!!!.

I'm done crying for the moment sooo I gotta laugh 😂😂😂😂😂

Have a lovely day panther.

👍🤗🤗🤗😎🤞❤️

Ah angry’s good! You have every right to be angry. I agree he knows he’s cocked up. Everything you said there is absolutely right. I don’t even think this is all about the diagnosis being removed. 20mg is a high dose of steroids it needs a follow up full stop. Regardless of him (if him being ill was partly the reason) the hospital failed in its duty of care to you by not letting you see someone else. The falling C4 is a known indicator not just for lupus so even if he wanted to call it a vaguer auto immune thing it’s still needed monitoring. I think the depleting C4 shows in your blood that illness has been active for 2 years. I can’t remember what he said about your urine, but be sure to follow that up. Lupus affecting your kidneys can creep up. Also just to let you know there’s a 6 month time limit on complaints so as you say see how it goes & if you’re not happy complain.

Sorry I know we all try to help on here, I’m not trying to make you feel worse, I’m just concerned that you now get the treatment & care you deserve & he doesn’t do any more harm. We’re all here to support you xx

BTW There’s a useful page explaining blood tests for lupus on LupusUK website.🙂

Nikkisrf
Nikkisrf in reply to panther50

Oh that's great panther I'll go look for the blood test paper. I am learning every day on here so thank you.You are not making me feel worse all.

Trust me I am very very happy for your Input panther.

That's why I put on my post saying "give me your thoughts/opinions good or bad"

Honestly panther I have been so low ,confused,ill I thought everyone would say....yes nikki he's right your wrong this is how it goes with rheumatology!

I was surprised, relieved,happy,sad, validated a whole range of emotions.

But honestly panther I appreciate yours and everyone's input into this situation. I have read so many eye opening stories. People getting treated worse than me. I know it sounds a bit weird. But makes me feel better? Vindicated? Validated? To know it is not just me. Sadly!

But I no longer feel like I am fighting on my own. Even the people have who disagreed or had a different point if view. I appreciate them too because they too are giving me a different perception.

I have felt so alone for years now. My mom has a very rare autoimmune disease. Iv been trying for over 30 years to get diagnosed. Sadly mom lost her bum length beautiful hair(fell out overnight literally). She lost her eyesite. She's bedridden. I don't even recognize her. All because nobody would listen. But when it was all to late she went for a bone scan and he said it wasn't right her being in a wheelchair at 52 so he did a few extra blood tests and phoned me a few weeks later to tell me. Her 4 parathyroids don't work and she has a rare autoimmune disease. But by now it's too late for her she is just a shell now. So iv been doing this fighting for mom since I was about 15/16 yr old. Then 15 years ago age 34 I started to get ill. And it's been a very lonely long hard battle for me. Then i got there had the diagnosis got the treatment. Then he takes it away!! Then all this. Cushing's too. I had to write 21 christmas cards and birthday cards for my granddaughter in 2019 and make that Christmas as great as possible because "I knew it would be the last good one wed ever have" I was told I'd got ovarian cancer and possibly bowel cancer. I'm a straight level kind of person panther. Wev all got to die it's just some of us die sooner than others ya know. So I planned my funeral trained my hubby how to live on his own told him to move on find someone to make him happy!

And all that for what?

Because he had the knowledgeable for me but didn't want to use it?

But iv been doing this on my own all my life no one I know to talk to who gets it.

Now! Well now. I don't come here to post. This is the second time (I think) iv put a public post on.

I useualy just sit and read. Read and read and read. I have learnt so so much. About thyroid, lupus,srjogens,raynaud's,all-sorts about my illnesses. Just little tips like if the temperature drops just 2degrees it can set off my raynaud's. So now I have a temp gauge outside in summer. (Never understood why my hands and feet would hurt in the middle of summer just as the sun was going down a.bit but still madly hot). So now I let the temp drop 1degree and make sure iv got my raynaud's gloves on and my socks. Lol theses little things have helped me so much. Making sure iv got my factor 50 on even in winter. Iv got film on my window so I can sit and look outside. All these things are a blessing to me. So THANK YOU to everyone of you on here who may read this.

I just want you to know that each and every one of YOU have helped me and continue to help me every day I read your struggles and your stories. I love the mira Mondays the crafting, the pictures of your gardens your dogs as well as all of the serious stuff too.

Youv been a blessing to me. Not forgetting paul howard and the team too. I love doing the surveys ect they will help someone else in the future I hope.

If ever anyone wants to moan,shout,cry or get angry at me just to vent and feel better. I am always available. Lol got no where to go 😂

Anyway I am rambling and being mushy so I'll shush now lol.

Enjoy your day panther thank you again. You have no idea how much I appreciate it ☺️.

Big hugs 🤗👍❤️ Nikki

panther50
panther50 in reply to Nikkisrf

You’re very welcome. We all help each other here. I too didn’t post much on here before, though I too got very helpful advice and support when my diagnosis was changed due to one negative ANA. During lockdown it helps to feel less alone, sharing how we’re feeling on here, with others who truly understand.

I’m so sorry you went through all that. My mum had ovarian cancer back in 2000 amazingly she was cured & lived another 20 years, but it was terribly distressing for everyone. I had my own scare just before lockdown as I had pain and my CA125 was high. Fortunately I was fine so interesting to hear it can also be raised due to SLE.

Who told you it was cancer? I think they’d always investigate cancer before considering other causes- if it’d been cancer and they’d put it down to lupus they’d be in real trouble. It sounds like someone jumped the gun - regardless of how, you’ve had a really rough time as a result- I really feel for you.

In future, if you’re still not getting good treatment, your GP could refer you to the Lupus unit at St Thomas’s. Not practical now as they are in London, but they are the experts in Lupus. There’s no guarantee they’d give you back your diagnosis but they excellent at monitoring everything. After all you’ve been through you have a very good reason to ask your GP to do this for you to get the answers you need. The complaint route may also do this, sometimes even an apology can go a long way. Although if someone knows they’ve got it wrong they can be brilliant after that (this happened with my parents’ GP).

Obviously all consultants know their stuff, it’s just some have rubbish people skills and don’t listen. This is half the job (v important in rheumatology) so it’s a shame their employers don’t place more importance on it! Blood test info see link:

lupusuk.org.uk/medical/lupu...

The bit on ANA is good.😀

Krazykat26
Krazykat26 in reply to Nikkisrf

Aww Nikki 🤗you're not alone n battling by yourself..not now anyway!! 😉You're amongst friends n fellow lupus warriors!! 🐺🥋🌈😽😽Xx

I’m so interested about the CA125. I have a friend who has Sjogrens and hers is often high as well. At first this was a huge concern but after a while they stopped worrying and she herself noticed that during her Sjögren’s flare ups it was usually much higher - but no one really grasped this at all.

Why do you think you may not have Sjögren’s as your main disease rather than Lupus? All the symptoms you describe are symptoms that come up over and again on Sjögren’s boards. Both RA and Sjögren’s are more commonly seronegative - this is where the 30% comes from - not so much from Lupus or my overlap CTD, Scleroderma. So I can really see why he’s thinking along these lines for you.

Also many with Sjögren’s (not including me but I have high immunoglobulins and high ESR and CRP inflammation markers with my overlap) have low C3 and C4. So it’s a common finding in this patient population too. Mine are usually elevated which I guess is to do with the high immunoglobulins.

There are too many rheumatologists who just can’t think outside of the box and it seems to me that yours is learning to be more open minded. I rather like what he said about the camel - and more so that you were honoured to be compared to one because you knew he meant it as a compliment.

People with Sjögren’s have a great deal to endure (including the fact that people with Lupus often think lupus is a more serious disease - which it isn’t - it’s just been recognised for much longer) and carry a load through intensely dry conditions that would completely sap the determination of most non sjogrens people. It’s a foul autoimmune disease and this is at last being recognised by more rheumatologists the world over. Maybe yours is one such? academic.oup.com/rheumatolo...

So I’m taking the camel comparison as a great one to apply to myself - rather than always being a zebra! Camels also have thick hide like rhino, as do people with systemic sclerosis, so it’s a double metaphor day for me today 🐪🐫 🦏😊

KayHimm
KayHimm in reply to 282523

It would be interesting to hear what the significance of the CA125 is in autoimmune disease, right? It seems like a test that used regarding other serious conditions.

In terms of diagnosis, you have a good point about the under-estimating of Sjogren’s. You might want to read the article on UCTD by Mitnick and Askanase. You can get a sense of how the rheumatologist’s mind works when diagnosing when things are not clear.

XK

282523
282523 in reply to KayHimm

Yes I must mention this post to my Sjögren’s friend with the CA125. She will be intrigued!

As you know I feel passionate about how underestimated Sjögren’s is as a stand alone rheumatic autoimmune disease of equal severity to RA and lupus.

But I also very much relate to Nikki and others who feel that many rheumatologists do not heed the latest thinking on diagnostic criteria.

I mostly post on the scleroderma & Raynaud’s (SRUK) HU now and use a different forum (SMART patients) for Sjögren’s info. And I do sometimes feel exasperated that I clearly have full blown antibody positive systemic sclerosis but somehow cannot get a diagnosis because my former rheumatologist has put the brakes on this diagnosis over a technicality (and their pride?) and my poor lupus rheumy feels obliged to fudge it now as Overlap CTD without naming what my exact overlap is -apart from Sjögren’s.

However I don’t really mind because my Sjögren’s is horrible and it’s the more treatable of the two (mycophenolate). I just worry that I’m not getting my heart and lungs monitored regularly because pulmonary arterial hypertension is my main risk with this overlap. Also technically I know I meet the full diagnostic criteria for both. But other than this I’m not bothered by the name they give mine as long as I’m treated and monitored appropriately x

KayHimm
KayHimm in reply to 282523

I know my friend with Crest syndrome gets regular echocardiograms to monitor for pulmonary hypertension. It does sound like you would be in the at risk category. Boy, that stuff is serious. I never went through anything like what I went through when a routine echo showed increased pressure. Ask your rheumatologist why you aren’t being monitored.

You present a good point. The main thing - no matter how the rheumatologist describes the syndrome- is monitoring and treatment.

Did you see my response after I asked my rheumatologist how they figured out what antibodies were causing a particular problem? He said they can’t. 😅

XK

282523
282523 in reply to KayHimm

I know - it’s rather shocking to me that I’ve never yet had an echocardiogram. And yeah I did raise this matter with my rheumatologist when she phoned and she said good question, looked on her screen and said she thinks I must be at top of the list. She said she’s be very surprised if I had PAH although she agreed it needs checking. When I next see her I’m going to have to point out that I’m constantly surprising health professionals so I’m still not that reassured! But I love her being my rheumatologist and don’t want to be a scleroderma patient as the doctors are rigid thinkers who don’t keep up. So there’s always a balance to strike between whether I’m more camel or rhino!

After another 3 weeks pondering this I decided to look and see whether people with Sjögren’s are higher risk PAH and yes they are too. So I phoned the cardiology department and they said that, because I was referred as non urgent 16 months ago I’m nowhere near top of list. I said I’d contact my rheumatologist to try and get this expedited but they said no she’s just a Lupus and RA rheumi and I need vascular medicine to expedite the referral as it came from them originally.

So I emailed both.

Your rheumatolgist is right about overlaps and antibodies but not so much about scleroderma. Scleroderma antibodies tend to be very reliable as prognostic markers - hence why I’m worried enough to risk rocking the boat a little! X

KayHimm
KayHimm in reply to 282523

Usually people with pulmonary hypertension have pretty serious symptoms. I don’t know what the NHS protocol is, but I wonder how often they pick it up on routine echos.

My question was not about diagnosis but about which antibody was causing a particular issue. Different antibodies are associated with different problems. I have two antibodies that are associated with autonomic dysfunction. He was just saying you really can’t know which is causing what. They would certainly use the knowledge to monitor people, though. High anti DNA antibodies may mean more frequent kidney function tests. That is their job!

Sixteen months makes a wait for an echo sort of useless. I think my friend explained that by the time you show increased pressure, the heart has already started to thicken. This was a long time ago, and I am sort of vague about everything now. The main thing to watch for is shortness of breath.

XK

282523
282523 in reply to KayHimm

Yes you are absolutely right about symptoms. But since I have Sjögren’s which has progressed to serious dryness in my mouth and throat it’s very hard to know. And as I have symptoms of gastropateis and worsening heartburn this also could be attributed to dryness and neuropathy of Sjögren’s. Both my parents died prematurely of cardiac arrest so I think I should be getting tested regularly anyhow but I’m on one of the main treatments for PAH anyway - Iloprost infusions. Maybe my rheumy hopes this will cover it as much as they can if I do have it.

And yes I completely take your point about how they can know which symptoms to attribute to which antibodies/ autoimmune disease. I’m in same position with gastroparesis and heart issues plus autonomic neuropathy. Honestly goes a long way and it seems we are both winning with our rheumies on this front at least. X

KayHimm
KayHimm in reply to 282523

You have a lot of major stuff going on. Gastroparesis is supposed to be very hard to live with. Keep track of the IVIG studies that are being done at Mayo in the US. They seem to be having success with autoimmune GI issues. Sounds like we have the autonomic and GI issues in common. Those nerves are part of the same system.

Good rheumatologists know to be prepared for all of these diseases to affect the body anywhere at any time. Diagnosis is the least of it for them.

Hang in there. Let’s hope new drugs come out soon.

XK

282523
282523 in reply to KayHimm

My rheumatologist is a good person and has also done better by me than any other of the 8 rheumatologists I’ve had in the last 10 years. I really do feel so lucky to have her even if she admits that she can’t keep me if I develop full blown systemic sclerosis. So I’m determined I mustn’t!

When I described my symptoms I honestly wasn’t expecting her to anything other than refer me back to gastroenterology for them to shrug and discharge me again.

But she said she really wanted gastroparesis looked into ASAP. I was very surprised and assumed it must be a Sjögren’s/ CTD/ autonomic/ small fibre neuropathy issue that flagged it up for her. I was unable to have them done as quickly as she wanted me to because of other treatments and hospital appointments - so now I have 3 weeks wait.

But that’s okay as I can’t say that eating radioactive scrambled egg is top of my things I’ve always wanted to do list 🤢😂

I googled GP afterwards using the NHS pages and to my surprise the only thing on my diagnostic picture that showed as a possible cause is scleroderma - the diagnosis that they can’t rule out but quite bring themselves to admit I have!🙄 X

“Causes of gastroparesis

In many cases of gastroparesis, there's no obvious cause. This is known as idiopathic gastroparesis.

Known causes of gastroparesis include:

poorly controlled type 1 diabetes or type 2 diabetes

a complication of some types of surgery – such as weight loss (bariatric) surgery or removal of part of the stomach (gastrectomy)

Other possible causes of gastroparesis include:

medicine – such as opioid painkillers (for example, morphine) and some antidepressants

Parkinson's disease – a condition where part of the brain becomes progressively damaged over many years

scleroderma – an uncommon disease that results in hard, thickened areas of skin, and sometimes problems with internal organs and blood vessels

amyloidosis – a group of rare but serious diseases caused by deposits of abnormal protein in tissues and organs throughout the body”

KayHimm
KayHimm in reply to 282523

Look up “autoimmune dysmotility, Mayo.” I think you will find there is a new understanding. They certainly don’t link it with only scleroderma.

Yeah, full blown anything is not good. 😟

282523
282523 in reply to KayHimm

Mayo said same causes as NHS but added hypothyroidism which is also on my list! Off to sleep now goodnight 😉😴

Nikkisrf
Nikkisrf in reply to 282523

Hi Yes iv had a year of being told it's ovarian cancer and possibly bowel cancer too! I even planned my own funeral. As my auntie died of it so I know how fast it works.

But if it wasn't for my gynaecologist I never would of known! Which is disgraceful.

I think you may of missed the bit where he said "yes your gyny is a very very clever dr not many people know this information"

Well my rheumatologist KNEW this information too. And so KNEW it last March when I went to him. But he stuck me on high doses of steriods and just left me. For a year on them. (Thinking I am dieing. Crushing my family) and he knew this was a marker for Lupus and srjogens!! He did nothing. Oh apart from give me terrible cushings as well. I got so desperate in January I droped 10mg of steriods over night (bad I know) but I was so I'll with cushing's I was thinking it's not worth living anymore this way.

He caused this!!

Yes I am the first to admit he is a very nice man! However as a rheumatologist!!! Well he has threatened me with " only he can decide to treat me he is in charge and only he can make me better" speach. You know be quiet or he will not give me treatment I desperately need. THIS is NOT acceptable behavior for an "expert"

He was.nice the other day because after many many times being asked to be seen by my gp. My gp put me for an emergency appointment! I then spent 3 weeks writing a comprehensive email and sending over 20 photos of me before during and after. My hands feet ect ect.

He realised he messed up and effectively made me I'll with cushing's as well as my illnesses in flare already and on top of that he has had me on a large dose of steriods for a year with no follow up atall. He appologised to me and said he will never do that to me again!!

Hence why I'm now on double azothyropine instead of putting my steriods back up again. He said.my body won't take that again!!

He could of treated me last march!! He had the knowledge and CHOSE NOT to treat me with double azothyropine! I may of been better by now. I am disabled now. Very weak and about to loose my job of ten years in a months time. He diagnosed me 5 years ago with lupus secondary srjogens and raynaud's. 4 years later because of a paper that was written and then the same day discredited by a leading rheumatologist in the uk. He puts a question mark over my lupus! But does not alter my (secondary srjogens diagnosis) well if I'm not primary lupus then I can't have secondary srjogens.!! So the question mark hangs in the air.

This is not fair. Now my C4 is low and I am showing protein in my urine he's saying "oh this is important with lupus!!!" Well make your mind up.

The stress of him giving me a diagnosis then question marking it then now changing his mind? My results have been the same for 5 years. Nothing has changed!

As for the camel complement. Well yes it is true and it is nice. However it counteracts the "complement" he gave me last year of " this is the best iv ever seen you. You look lovely nikki."

I was skeletal no muscle mass in my arms and legs and 7stone I literally looked like I was dieing"!

So his "complements mean nothing really. Lol.

He has done wrong. He knows it.

Now he is scared (maybe) I might report him?

I just want my diagnosis...which means the correct treatment which means I get better. (Or at least better than this).

I hope your friend with sjrogens is doing ok. And so to for you. Thanks for the reply.

Have a good day.

Nikki🤗👍🐫🐪

282523
282523 in reply to Nikkisrf

Hey as I just replied to Kayhimm - I’ve been in almost exactly the same boat as you only with systemic sclerosis rather than Lupus. And actually I’m still in the same situation as you, often toilet bound with systemic sclerosis damage, being tested for gastroparesis now because I’m struggling to eat anything so losing weight.

I am quite newly very specifically antibody positive for systemic sclerosis and was diagnosed with this and Sjögren’s (lip biopsy and high immunoglobulins). But because I don’t have one of many diagnostic criteria my former rheumy has told my new lupus rheumy that she has to pull this diagnosis - so now it’s been called overlap CTD rather than systemic sclerosis with overlap seronegative Sjögren’s.

The point you’ve failed to grasp though is that, according to the latest EULAR/ ACR and BSR guidelines on Sjögren’s - the distinction between primary and secondary no longer exists. As I’ve always known but others seem to have been reluctant to admit - Sjögren’s is always Sjögren’s whether on its own or with another.

So when and if my systemic scleroderma is finally too obvious to ignore - I will still have Overlap CTD because Sjögren’s is always a stand alone disease in its own right.

This applies whether it comes first or second, whether it co-exists alongside another rheumatic autoimmune disease or whether you have Sjögren’s as your main rheumatic autoimmune disease. If you want confirmation of this then please open the link I previously attached showing the BSR’s latest guideline scope on Sjögren’s - published in early February.

I do know exactly how it feels to have doctors ignore or obfuscate or deny really important stuff they are actually aware of . It’s happened to me many times and is still happening to me. For example I need to be tested ASAP for pulmonary arterial hypertension - the main killer that makes systemic sclerosis the most “heartsink” of rheumatic autoimmune diseases. I’d rather have prospect of a pulmonary embolism excluded if possible.

Even my lovely latest rheumy tried to persuade me to accept “less well defined CTD” just before Christmas when she knows that I have a definitive diagnosis of seronegative Sjögren’s and a very high antibody that is 96% specific for systemic sclerosis plus at least three major symptoms and signs.

At the end of the day I’ve also been put on the wrong drugs for the wrong problems and these made me terribly unwell, almost tipped me into full on diabetes. So I know exactly where you’re coming from and I do now refuse to return to the scleroderma doctors who did this to me - even if I do have scleroderma.

I’m very unforgiving and often very angry. But I also make every doctor I have well aware that I know what I know. The scleroderma rheumy was also lovely to me last year and I guess that was a kind of apology of sorts for having almost discharged me and worse - handed me to the psych lot with just “chronic illness and non systemic Sjögren’s”.

But at the end of the day when trust has gone then it’s gone and only you can decide if a year of living what you’ve lived with is something you can learn to forgive and learn to trust him enough for or not.

I can see the cushings and the fear would be a hell of a load to bear. But on the other hand maybe he didn’t know about the CA125 until your gynae explained it? I guess a lot goes on behind the scenes we may never really know about. My rheumatologist has never replied to my recent email asking for her to expedite my echocardiogram. She has often failed to contact me when I’ve needed her over the past year. But I found out she was redeployed to oversee Covid critical care - and she is a sympathetic person as well. So for now I’m sticking with her.

Being misdiagnosed with ovarian cancer would have unhinged me too so I can well understand your feelings on this matter. Perhaps you should ask him why he didn’t choose to share his knowledge about the CA125 being a measure of systemic inflammation if he knew all along? Being able to trust our doctors is pretty important.

Nikkisrf
Nikkisrf in reply to 282523

Yep I totally agree lol. But he knew already. He was impressed greatly that the gynocologist knew it too!! Lol. Gyny was really angry. She said he should already know this. It's a basic marker for your illness tell him from me he needs to use CA125 as your marker. But he knows already!!I thought wow I bet he doesn't know. I was worried sick about passing the message on to him. But I thought nope iv had enough. If he doesn't listen I'm going to pals.

But as I said he's worried he's made me so I'll he may be in trouble.!!

Hey thank you for link iv just been reading it. !!! What a dry eye opener!!(sorry bad joke I know but I have to laugh).

I told him the other day I'm out of breath and my sats are fluctuating. Heart rate from 37 to 143bpm. And oxygen is 95 to 80.!

Now.my nurse shouted at me down the phone and told me to phone an ambulance imediatley. I refused as I do not want to go to hospital because of covid.

However when I told my rheumatologist he said.....oh don't worry about it nikki your sats are better than mine! And your out of breath because you have been I'll for so long! Lol

My ocupational health therapist saw me and said I need an oxygen bottle. Lol.

Now I read on the link this is part of ss! Oh my do any of them know what they are doing!!

Anyway thanks again for the link was very interesting and iv book marked it. Just incase I need to recite it!!

Nikki 👍👍🐫

282523
282523 in reply to Nikkisrf

I’m so sorry you too are having to piece stuff together through info you’ve been given from this community rather than your medics.

Yes Sjögren’s is a complete B*****d of a disease and I’m so lucky that I was diagnosed by lip biopsy by one very astute rheumi just prior to him retiring. He also told me I must be alert to the significantly increased risk of lymphoma - another aspect of Sjögren’s these wretched rheumatologists frequently overlook. I make it my mission to educate all my doctors about it now but it’s a bit of a head banger - you really need the rheum who led this paper to advocate for you if possible. She does see patients privately and charges half the amount most do.

Or maybe print off this guidelines scope and send him a copy by post by way of a camel’s nod, wink and a kick?! 🐫😉👊🏻

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