Can Antibody / ds DNA/ ENA/ Lupus anticoagulant tests change from negative to positive over time?

[ExtremeDuvetDaze]

Hi there,

After seeing a rheumatologist for a follow up appointment on Monday where I was given a diagnosis of a mild form of Lupus, today I have received a copy of the GP letter from him where he says that with my symptoms and positive ANA centromere pattern at 1:640 and positive Anti Ro I have cutaneous Lupus but goes on to say ' whether or not this immune issue is having an effect on her overwhelming symptoms of pain and fatigue is a moot point' !

Can you not get joint pain and fatigue with any form of Lupus???

I was diagnosed with UCTD in 2002 and Fibromyalgia in 2010 and everything has got much worse over the last 18 months, during which I have had to give up my career and my life has pretty much come to a standstill.., my worse symptoms are overwhelming fatigue, joint pain in many areas and worse in my hips, back and feet, also bad Raynauds in my hands and feet, and photosensitivity, chronic migraines, constant spaced out feeling, hypersensitivity to many drugs which is making pain relief very difficult, along with many other things.

I have also had decreased kidney function over the last 12 months which had recovered ( they thought it was NSAIDs induced so had to stop them) but it has recently decreased again with the rheumatologist telling me I had ++ menstrual blood in my urine on testing ( I told him that wasn't possible because I'm post menopausal, I was puzzled that he should assume this) but he has told me without doing any other investigations that the blood is not significant and that I don't have lupus nephritis and is due to hypertension which I don't have because it is well controlled on a low dose bp med so again puzzling...🤔

The rheumatologist told me my Lupus probably won't get any worse than it is now but they told me that back in 2002 when I was still able to work and had a 'normal' life so yes everything has got much worse.!

I was wondering if anyone has had other tests for lupus for example ds DNA, Anti La, Anti smith antibodies, RF etc that have been negative but later changed to positive and can cutaneous Lupus progress to Systemic Lupus over time?

I've had a positive RF in the past but this time it was negative, the rheumatologist said these blood tests for Lupus that came back negative will stay negative!.

I wasn't overly keen on this rheumatologist, he had very little compassion, he was very abrupt, his 'bedside manner' was abysmal, when I walked in he didn't even look up from his computer to greet me he just grunted, which straight away made me feel inferior and as though he was disinterested!

Btw my Dad had 'Full blown' SLE so I have some experience in it and its always been in the back of my mind that it may develop, he passed away 16 years ago and knowledge/ understanding and tests have progressed since then.

Any help would be much appreciated.

Thanks

Diane 🌺

[Bebe76]

Hi Diane, Would it be possible for you to get a second opinion or switch to another rheumy? It sounds like this rheumy has already made up his mind about you. Your kidney issues should be taken seriously, especially given your family history of SLE. Can you bring up your concerns with your GP? I am not sure why your rheumy told you in 2002 that because you tested negative it means you will never test positive in the future...clearly he is misinformed .. is this the same rheumy you have now?

I found this in a research paper that looked at autoantibody levels prior to symptom onset in SLE:

"Autoantibodies against nuclear antigens were detected a mean (±SD) of 5.6 ± 4.7 years before the onset of symptoms and 8.7 ± 5.6 years before diagnosis in 63% of the individuals who subsequently developed SLE. .... Anti-Ro/SSA antibodies appeared first at a mean of 6.6 ± 2.5 years prior to symptom onset. The mean number of autoantibodies in prediseased individuals was 1.4, and after disease onset it was 3.1 (P < 0.0005)"

arthritis-research.biomedce...

[ExtremeDuvetDaze in reply to Bebe76]

Hi Bebe76

Yes I've spoken to my GP today and filled her in with my recent appointment, the rheumy I'm seeing at the moment is a different one to the one I saw back in 2002, the present one has booked me in to have my hips and back injected although he was loathed to do it as he said it was only short term and when the pain comes back he won't do it again, I'm not stupid I know that there's only so many times you can have it done and this will only be the second. He said didn't I want long term relief, of course I want long term relief but I would rather have short term than nothing at all! He made no suggestions in helping me long term with my pain, although I have started Hydroxy today but he said this wouldn't help with my back and hip pain, he couldn't see anything wrong with my X-rays although I do have a traction spur in my spine and some degeneration, I've had injections in the past which have helped no end albeit short term but then I went onto Arcoxia which I can no longer take, I had to suggest things to him for long term relief like a referral for physio or pain clinic or the musculoskeletal clinic while I have the injections, he gave in in the end but it was a battle!

I've asked my GP if when I've had my injections if could have my follow ups with a different rheumatologist, she said yes!

I also asked him about the Lupus anti coagulant test and he said it was fine, I've also received copies of my results for my files and there's the anti phospholipid test which was negative but I can't see the lupus anticoagulant and at the top of each results page it clearly says ' no lupus anticoagulant sample received' so again I'm puzzled unless if you are negative for anti phospholipid it's a given that the Lupus anticoagulant will be too!

In 2002 the rheumy didn't think my symptoms would get any worse and this rheumy has said the same but 14 years on I am clearly worse, and yes this one has said my tests won't change now, it is a worry that our lives are in their hands!

Anyway thank you so much for taking the time to answer my post, I really appreciate it and for the research link too.

Diane X

[Bebe76 in reply to ExtremeDuvetDaze]

Yes, worrying indeed that so many of us need to do our own research about our disease rather than rely on our doctors. Glad you will be seeing a different rheumatoid next time, hopefully he/she will be more sympathetic and knowledgeable! Hope the hydroxy works for you.

[ExtremeDuvetDaze in reply to Bebe76]

Thank you 🌺

[heatherevans28]

Hi. Obviously im are not medically trained but a couple of questions I do know the answer to:

1) cutaneous lupus is a separate form of lupus and so does not progress to systemic lupus. Some people can have both systemic and cutaneous lupus but they are separate conditions. Joints are not affected in cutaneous lupus.

2) the levels they identify of blood and protein in a urine sample are sometimes minute as it is done on such a microbiological level. This means they can mean nothing. The body releases more at times like periods or if you have a urinary tract infection. Please try not to worry too much at this stage. If the levels are high then this would be cause for concern and your GP or consultant would be able to tell you this from your results. You would then be referred for further testing. Maybe check with your GP to find out what your levels were or whether they were sent to lab for further investigations (if they were high)?

3) the maximum number of recommended steroid injections in one joint is normally 3.

Sorry I can't be much more help but I hope you find some answers. xx

[ExtremeDuvetDaze in reply to heatherevans28]

Hi there, thank you for your answers🙂

I've just read that approx 50% of cutaneous lupus sufferers have arthralgia and that 1 in 10 may go on to develop SLE.!

I have copies all all my blood tests etc since they missed my decline in kidney function and it wasn't picked up for 9 months, it had recovered and was normal in March but six weeks later it has declined by 30%, I'm having another blood test and urine test in a couple of weeks. I'm also waiting for the result of the Msu I did on Monday that was sent off for culture and microscopy. I'm post menopausal (55) and haven't had a period for over two years and as far as I'm aware no infection, but yes I agree I need to see what comes back from the lab , the dipstix are very sensitive, but the consultant was talking as if it was a trace of blood but according to his letter to my GP it was ++blood and has handed it over to her to follow up. I have a lot going on health wise so trying not to think about it until I have to and just as long as nothing gets left or missed again!

I am puzzled though that some people seem to have the same symptoms as me and get a diagnosis of SLE with just a positive ANA!

Thanks for your help, I do appreciate it, I'm new here and this feels like the right place to be for support and help.

Hope you're having a nice weekend

Diane 🌺

[heatherevans28 in reply to ExtremeDuvetDaze]

Oh that's very surprising about 10%.. Can I ask what you are using for information?. Online I use Molly's fund and lupus U.K. for information as I know lupus uk are strictly regulated for accuracy. Molly's fund quite clearly explains the differences between the types and the crossover etc.

I'm not sure what you mean by 30%.. 30% loss of functioning on the blood test? I was told that bood ++ is an abbreviation for positive blood in the urine (even a small trace) and does not relate to the levels. The numbers from the dipstick would indicate the vague levels. Have you been told that it means a lot of blood in urine? If you had kidney damage previously then the scarring would mean you would constantly have small amounts of protein or blood in your urine, so I wonder whether they are less concerned about small amounts? A friend of mine is now in remission but she had kidney damage and so still gets protein/blood in her tests due to the scarring.

Sounds good that they are sending it away to lab to check the cause and your GP is taking it forward. Try not to worry too much, the dipstick test is used to make sure that these things are caught early on, though if you've had such serious issues before I understand your concern.

Also, I've never heard of anyone being diagnosed on a positive ANA alone.. I've seen a few posts on here of a similar idea and then the comments etc actually show that other tests and symptoms contributed towards it. Most consultants are taught to use a very rounded approach on diagnosis because we know so little about these conditions and there are so many overlapping ones.

In the meantime, try to look after your body and do what you can to self manage your current diagnosis. Sometimes it's just a waiting game.

All the best xx

[ExtremeDuvetDaze in reply to heatherevans28]

Yes it was from

lupusny.org/about-lupus/fig...

I'm sorry I thought I'd saved the other page about the 50% and joint pain and can't seem to find it now, I'll keep looking. .

I've been reading Molly's fund and Lupus uk which seem to be the best for info, but you know what it's like when you're first diagnosed with something you read as much as you can on it, I've got to a point where I'd rather just ask questions on here and still to Molly's fund and Lupus uk.

I can't help thinking though that the 'Cutaneous Lupus' diagnosis doesn't feel right, on a daily basis I don't have a skin probably only if I sit out in the sun will my arms and chest turn blistery and itchy, my face gets very red and I always have red blotchy cheeks more so on one side, but I do have bad joint/ muscle pains, overwhelming fatigue, very significant Raynauds,constant mouth ulcers, I get fluey without having flu, I feel poorly all the time, some days are easier to cope with than others, chronic migraines, dry eyes and in the last few months I've started getting excruciating pains in my jaw and under my tongue on eating but only sometimes not always! The rheumatologist wasn't interested he said it was probably a stone in my saliva duct and couldn't help me! Maybe it is, my GP said it was important to tell him as this is a symptom of Sjorgrens, I have positive ANA, positive Anti Ro and equivocal Anti La ( equivocal is a bit of a grey area). He didn't call it 'cutaneous ' when I saw him but 'mild' lupus and I have a family history of SLE, I'm quite confused as to why he calls it cutaneous! Obviously I don't want Lupus at all but I do want a correct diagnosis. I've had my thyroid throughly checked out (I have a multinodular thyroid) and needed to know whether my thyroid was causing any of my symptoms which thankfully it doesn't appear to be.

At my first appointment with this rheumatologist I asked him if it could it be my thyroid and he just looked at me and said ' no it's not your thyroid' this was before he'd known anything about me other than I was diagnosed with UCTD in 2002 and fibro in 2010, he cut me off and wouldn't let me talk about my concerns about Fibro and thyroid! Thankfully I've seen a lovely endocrinologist since, who was more than happy to help.

I had no other tests for Lupus when I became very poorly in 2010 , they just said it was fibro and that's what I've been living with since then so everything has been put down to fibro until I saw a cardiologist last year who was angry that my kidney function result had been overlooked and insisted I see a rheumatologist again, sadly I've landed with the wrong one and do feel I need a second opinion!

As for the kidneys yes that's a 30% decline from my last blood test.

Anyway I guess I'm on the right treatment either way...

Sorry this is long again.

Thanks for listening heatherevans28

Diane 🌸Xx

[heatherevans28 in reply to ExtremeDuvetDaze]

Yes this link does seem to be simplifying it by using the word developing.. Which is very misleading. 10% is probably correct for those with both types of lupus or systemic affecting the skin also.. Though the newest figures for that seem different as well. I'm glad you are using Molly's fund and lupus Uk. Anecdotal evidence is helpful but can be misleading at times.

No problem at all, always happy to talk about or direct questions where I can. I'm glad you are finding answers but I know that they aren't always satisfactory. Sometimes it's just about your disease treatment or a symptomatic approach.

For example Raynauds, dry eyes and migraines can all be treated by other people and are not affected by any lupus medications. It's often connected to any form of lupus.

Has your GP referred you for a sjordens test? It takes a few minutes and you get the results there and then so that you can be put on the relevant ointments or drops. Maybe this is something to look into? Same for Reynauds and migraines.. These can be diagnosed and treated by GP or another specialist. Also for joint pain sometimes a pain management clinic or session or OT can help to make sure you are on the right pain relief and have self management ideas.

Just thinking of things you can do short term to incense your quality of life while you await longer test results or a second opinion for the underlying cause.

All the best xx

[ExtremeDuvetDaze in reply to heatherevans28]

Thank you it is good advice you give and it all makes sense, I've tried to managed my symptoms over the years as they've occured, the only drug that made a difference was Arcoxia which I'm no longer allowed to take and have seen several specialists for the chronic migraines, have tried many drugs, Imigran is the only drug that helps, also tried TMS and 2 rounds of Botox which was pretty horrible, the second lot made me very poorly 2 years ago, but strangely enough since I had a daith piercing in January which I was sceptical about actually working(after all it is only a piercing) I've had very few migraines since, it has made such a difference, I guess it's still early days, there have been a lot of discussions about this in the migraine world with very good results for many people so after a great deal of thought I took the plunge, I won't lie it has taken a long time to heal and is still pretty tender but I've only had 7 migraine days compared to between 24 and 36 that I would've had, which is very positive, I have no idea why it should work and I'm pretty sure it's not placebo! Btw I had the piercing done through recommendations, the chap that did it has an interest in daith and migraines and is doing a study so I'm part of his research group.

In the past I've also had CBT , acupuncture and chiropractic treatment,physio, of which some end up costing a fortune with no real long term relief, I stopped the chiropractic treatment after she did something with my neck and I had a 17 day migraine!.

I've received my appointment for physio for my hips and back and waiting for a date for the injections and stared Hydroxy, if not much joy from these I shall ask to be referred to the pain clinic, which is one place I've not been to yet.

If I find the 50% and arthralgia link I'll pass it on.

Thanks again, much appreciated

Best wishes to you too 🌺Xx

[misty14]

Hello extremeduvetdaze

Reading your posts I really feel you need a Rheumy who is more willing to investigate significant symptoms!. As you have gone from a diagnosis of UCTD to lupus from blood results it means your illness is changing and therefore needs better monitoring especially the kidney function fluctuating as well. I'm glad your bloods and urine are being tested and those results will help you decide what to do. Are you being treated?. Good luck. X

[ExtremeDuvetDaze in reply to misty14]

Hi misty14

Thank you and thanks for taking the time to read and for replying, I do feel I need a second opinion, as I've said in my reply to heatherevans28 just now that I don't feel happy with the diagnosis of 'cutaneous lupus' but feel it's more like SLE even if I don't have internal organ involvement at this stage, I know all my symptoms have got slowly worse over the last six years and more so in the last 18 months which is why I've had to give up my career, emotionally it wasn't an easy decision as I loved my work and my manager was so accommodating with my illness that made it possible to continue for as long as I did but it just got to the point where my body just would not let me do it.

The rheumatologist has started me on Hydroxy 200mg twice a day, I started this on Friday and it's making me feel very sleepy on top of my fatigue! I hope this feeling subsides soon!

I was sent to a private clinic that take nhs patients 30 miles away rather than my local hospital, but I'm not happy with this consultant on top of having to travel so I've asked to have my follow ups at my local hospital.

When I go back to get my hips and back injected I shall ask him why he thinks it's cutaneous lupus as opposed to SLE, which I would've done on Monday if I'd had my wits about me but then I didn't really know about cutaneous lupus as in his previous letter to my GP he'd said I had lupus serology with a positive role so I was preparing myself for a diagnosis of Lupus.

Hope you're having a pleasant weekend

Thanks again Diane 🌺X

[misty14 in reply to ExtremeDuvetDaze]

Hi extremeduvetdaze

So sorry you've had to give up your career, that must have been really tough!. Hopefully if the Hydroxy works you might be able to do something different and have a new life. Citizens Advice will run a benefits check to see what help you could be eligible for and help you claim .

Good luck with the hip and back injections, hope they work. Hydroxy can be good for joint pain. Much better to be seen at your local hospital and great way to get a second opinion. Keep us postedX

[ExtremeDuvetDaze in reply to misty14]

Thanks misty14, I've not yet applied for benefits, I've just checked the CAB online and looks like I could be eligible for pip, my husband has been supporting me but it's a squeeze, also I've put it off because they treated me so badly when I was first off sick for a year 6 years ago, Where they refused to give me esa even with Drs letters of support, I ended up going to my local MP for help, I have to be honest it annoys my husband a bit because we've both worked for years paying tax and NI , my sickness record at work was exemplary too before I got poorly even when I went back on reduced hours I struggled on and was rarely off sick for those three years, I was also dealing with student finance England at the time because they were being very difficult over my son's fees and had a battle with them too, MP's office again were brilliant. It was a very stressful time and caring for my poorly mum too. I guess that is life but the benefit system makes you feel stressed on top of already feeling poorly and in pain, I have to try and find a way of not letting it stress me out.

Thanks for your support, you just mentioning it has given me a push to look into it, after all I still have another 12 years or more where I should be working, pity they moved the pension age up from 60 !

I'll keep you posted.

Diane 🌸Xx

[misty14 in reply to ExtremeDuvetDaze]

Hi Diane

I couldn't agree with you more about the benefits system which is why I suggested CAB. You've been put thru the mill by them and I have recently lost my ESA and needed their excellent help. It's bad enough being ill without the stress of these 'extras'. Good luck. 🌷HelenX

[ExtremeDuvetDaze in reply to misty14]

When you join forums like this and fb support groups you realise just how many people struggle with it all including the benefits system!

Thanks for the heads up about the CAB I wouldn't have thought of them, it's good to know I can go to them for help too.

Good luck to you as well Helen.

Diane 🌸X

[friars126]

Hi Diane,

It does strike me that some rheumatologists diagnose SLE on much fewer symptoms and results than others. Especially the ones willing to diagnose seronegative. I completely understand that they never want to rush into a diagnosis but it would be nice if they provided people with explainations. It doesn't help when they say one thing to you and another to your doctor.

I'm awaiting my first rhematology appointment after having a negative ANA in October but positive in March. I've been feeling quite ill for a year now and i'm 33. I also read that about 30% of the general population can have positive ANA but that's in healthy people and without symptoms it's not a concern.

I hope you get to see another Rheumy who's more understanding, patient and empathic! It sounds like you've been through a great deal already.

Friars xx

[ExtremeDuvetDaze in reply to friars126]

Hi Friars

It's good to meet you, sorry you are having a rough time too, I completely understand, I have felt ill pretty much everyday for the last 6 years, when I was diagnosed in 2002 I had a long bout of fatigue ( I thought it was long, it was about 6 weeks) and other symptoms like Raynauds etc but no joint pain then, I had a positive ANA and RF ( this time a negative RF) all my other routine blood tests usually come back normal, although I had a positive one for Lupus in 2002 and then a negative so I was diagnosed with UCTD. I managed my symptoms and had pretty much a normal life but used to dread the onset of the fluey symptoms and fatigue never knowing how long they would last could be days or weeks but they would subside eventually but then in2010 I became very poorly with overwhelming fatigue and joint pains in my hips and tender all over, the rheumy said it was fibromyalgia, my blood tests were normal but they didn't recheck any tests for lupus, so everything I've been experiencing has pretty much been put down to fibro! In Sept 2014 I again got to a point where I felt so ill I just couldn't carry on trying to be sort of 'Normal' and had another year off work eventually giving up.

I can't remember what normal feels like, I get the odd day where I feel a little better but they're few and far between, if I'm very lucky I might get two or three days in a row, for what seems no reason and then out of nowhere comes the fluey deep bone aching really ill feeling that completely floors me.

When I look at the symptoms of cutaneous lupus and SLE and with my positive blood test results I don't feel I've been given the right diagnosis. I don't know why the consultant said to my face it was fair to say with my symptoms and my positive ANA and Anti Ro that I do have Lupus but it's mild! I could accept that, knowing that I don't have organ involvement although not sure as yet what's going on with my kidneys but to then write in the GP letter that it's cutaneous is a bit annoying, if he'd told me this at the time I would've asked what that exactly was and why he thought it was that as opposed to mild SLE! When I go in for the injections I shall ask him why.

Trouble is everything seems to take months, appointments etc, it's so frustrating, but I use that time to write things down and get things ready and focus what to ask the Drs and do my research, I'm learning to challenge and question them, I think we have to.

I hope you get to see a good rheumatologist too, when is your appointment?

Thanks for replying, I like this forum everyone seems really helpful and very supportive

Diane 🌺Xx

[Paul_Howard Partner LUPUS UK]

Hi ExtremeDuvetDaze ,

Has your consultant stated what type of 'Cutaneous lupus' they believe you have? Acute cutaneous lupus only occurs in people who have SLE, people with subacute cutaneous lupus have approximately a 50% chance of developing SLE and people with chronic cutaneous lupus have between 10-20% chance of developing SLE. All have different clinical manifestations.

It sounds as though you may need to be referred to a different specialist for a second opinion. If you would like to be referred to a consultant who specialises in lupus, let me know what area you live in and I can provide information about any that may be near to you.

[ExtremeDuvetDaze in reply to Paul_Howard]

Hi Paul,

The consultant started off by saying I'm probably still in the category of 'UCTD' , I had prepared myself for a possible outcome of Lupus with my symptoms and positive results, I have lived with the thought for the last 14 years that it may develop one day, when I said to him that obviously I don't want Lupus at all but I'd rather have a diagnosis and be able to move on with some kind of treatment than be left in this 'nomansland' of pain and fatigue and many other symptoms he then went on to say 'oh yes it's safe to say that with your results and symptoms of Raynauds and sun sensitivity( he didn't take into account my other symptoms) you have Lupus but mild Lupus, he also said it wouldn't develop into systemic lupus, he never once mentioned Cutaneous lupus to me or I would've asked more about it, however this is the diagnosis he has given me in the GP letter, I've since been reading about cutaneous Lupus and I don't feel that I really fit in with this diagnosis, my symptoms are not confined to my skin , I don't have a skin problem as such, my face gets very red across my cheeks and often stays very red on one cheek, it doesn't look typical of the butterfly rash ( I didn't wear makeup to my appointment so he could see my skin) I do have a problem in the sun where my arms and chest if exposed in direct sunlight will become itchy, rashy and blistery even after a few minutes, he wasn't interested in helping me with my joint pain because my X-rays didn't show anything other than a traction spur in my spine, when I asked him if he was still going to inject my hips and back as he said he would at the first appointment he just said 'No' , I asked if the Plaquenil will help it and he said 'No'...when I mentioned my Kidney function declining again he immediately said ' It's not lupus nephritis' He would never give me a reason for any of his answers he would just cut me off and say it just isn't! He didn't once examine any part of me, not my painful joints or look at my skin apart from my face, I guess the only good thing is that my Raynauds was quite bad when I first walked in and stayed that way because he had air conditioning on so at least he could see that!

I live in East Sussex and originally I was seen at Eastbourne DGH where my GP said I could have my follow up appointments if I'm not happy, I'm not sure if the consultants there specialise in Lupus so that would be good if you could point me in the right direction.

The more I think about this consultant the more upset I feel and even though he gave in in the end and is booking me in for injections I actually don't feel comfortable with him doing them but I've waited along time for some relief albeit temporary!

Thank you Paul for your help, sorry this is long winded, I think I've gone on a bit and probably repeated myself in these posts several time over but it's been good to talk it through.

Many thanks

Diane 🌸

[Paul_Howard Partner LUPUS UK in reply to ExtremeDuvetDaze]

Hi Diane,

I think the only lupus specialist I know of in Sussex is Dr Brenda Stuart at the Princess Royal in Haywards Heath. I would definitely push for a referral to a different consultant if I were you.

[ExtremeDuvetDaze in reply to Paul_Howard]

Ok that's great Paul thank you, I'll look into that, it's not too far from me either.

I really appreciate your help.

Diane🌸x

[ExtremeDuvetDaze in reply to Paul_Howard]

Hi Paul

Just to let you know that I contacted my rheumatologist's (the one I'm not happy with) secretary 2 weeks ago asking for copies of the results of my Lupus anticoagulant test ( also my urine test that went to the lab) , I have received a letter from him today, he has stated the same things as in the follow up GP letter and just says the cardiolipin test was negative but still no mention of the lupus anticoagulant test result or urine result which I have asked for! Out of the three tests that should be done for Anti phospholipid syndrome according to the Hughes Syndrome Foundation he's only done one test yet he states there is no evidence of Anti phospholipid syndrome!

So another phone call is in order to yet again to ask for these results, which I feel are not available because they weren't done in the first place!

I feel has has avoided the issues that I'm trying to get answers to.

I have seen my GP today and have asked for a second opinion, she has also said that I should write in to make a complaint and she is happy to refer me to Dr. Brenda Stuart in Haywards Heath, can I just clarify with you that she does specialise in Lupus?

Many thanks

Diane🌸

[Paul_Howard Partner LUPUS UK in reply to ExtremeDuvetDaze]

I'm sorry to hear that you are being given such a run-around, but I'm glad that you have a supportive GP. Yes, lupus I have been informed that lupus is one of the specialties of Dr Stuart.

[ExtremeDuvetDaze in reply to Paul_Howard]

Thanks Paul, that's great, I can't thank you enough for your support, this is a great forum, I'm so glad I've found somewhere to turn to.

Hopefully at some stage soon I'll have something positive to say

Best wishes

Diane 🌸

[friars126]

Hi Diane,

It sounds like Paul's suggestion for a second opinion by a specialist is definitely worth trying! I feel for you because I read so many posts like this where Rheumatologists are dismissive of people's symptoms without any explanation. I realise it must be annoying for them when they used to be the experts but now most people are able to do their own research, that should be allowed to be explored. If I had a rheumatologist like yours, I'd definitely be looking for a second opinion! Either you have Lupus or you don't and he's written that to your GP and you have every right to know now only if that is the diagnosis but which kind and how they plan to treat it, which is impossible if he's saying to you that you have it mildly but is dismissing your symptoms as UCTD. I'm sad that you've had to be in pain and suffer when it could easily be treated if you could get the right diagnosis.

I too have been ill off and on over the last year with severe bouts of fatigue but since February, I've been having increasingly severe pains in my arms, legs and back. Sometimes tramadol only takes the edge off it's so bad and I am no stranger to pain.

I really hope you can get to see the specialist soon and be heard and supported.

Friars xx

[ExtremeDuvetDaze in reply to friars126]

Yes I agree it must be difficult sometimes for the Drs (this one's is a bit 'old school') although I feel some of them need to change with the times as we become more aware and more knowledgeable, there's a lot of info out there to aid and help us better understand our bodies and what's going wrong and why especially with chronic illness, after all you can't feel so poorly for so long for no reason and most importantly to get the right diagnosis.

I think this consultants attitude, his body language, his 'bedside' manner and the way in which he verbally comes across is pretty abysmal....having skills in all these things when dealing with patients is so important it goes such a long way in instilling confidence, trust and faith, all of which he gave me none.

I feel for you too because you are so young ( the same age as my eldest daughter) I'm so grateful that my condition wasn't this debilitating when my children were very young, I have four and they're all grown up and moved out so I'm thankful for the peaceful times and able to get through the day at my own pace for the most part but it's not the life I invisiged for myself or my husband at our age and of course I now think about how will I cope when grandchildren come along! All my children and my husband are brilliant and very caring, understanding and above all very patient with me! So I am lucky in that respect.

I've just started hydroxychloroquine, so whether it's Cutaneous or SLE it seems this is the right treatment to start with.

I'm sorry that your pain is so bad that tramodol only takes the edge of, pain is so exhausting isn't it?

Hope it won't be too long before your appointment so you can get some answers too and some relief from your pain. I'm sure not all rheumatologist are bad ones, I hope I haven't put you off them, My dad had an amazing one that looked after him so well but that was 20 years ago when he was diagnosed and things have come along way since then, sadly this very good rheumy left just before I was UCTD diagnosed .

Good luck, take it easy when you can.

Diane 🌺xx