Serious question about hydro

[Buckley123]

Hey guys how was your Christmas? I had a great Christmas pain free would you believe now I’ve been paying for it for it since 🤦🏼‍♀️😂😌

I joined a new gp surgery

Went to see the nurse for my regular b12 shot I was worried Incase She taken it away so I explained a few things and the pa thyroid antibodies all my symptoms in fact I don’t know why I did and she was really interested and understanding she told me she has lupus ❤️

I explained everything doctors I’ve seen what they have said she asked me lots of questions explained it took 5 and half years for her diagnosis and had many symptoms in common she told me not to give up and gave me a name of a rheumatologist at my local hospital who she says is fantastic

What she actually said was she had been a nurse for 30 years so it was hard to be impressed by consultants this man impressed her a great deal and suggested that I would go and see him then I wouldn’t have to travel into London he was very thorough kind and understanding she also told me that bloods to fluctuate and her bloodwork didn’t match up with her symptoms for many years which is why I can’t understand why Dr C said what he did she also asked me if when I went to guys for my blood tests was I already on hydro I said yes for around 8 months

She told me that it was Ridiculous for Doctors to be looking for inflammation in the blood whilst I am having a tablet to reduce inflammation!!,

She asked me to speak with my doctor maybe about stopping hydro see what my blood say that’s what she did after four years stop the hydro and all of her bloodwork became positive.

She said your doctor should’ve known this I was honestly I have to say a little bit starstruck to see somebody with actual lupus a real person that generally understood what I meantEven if mine is not low because I still believe it to be like this like I don’t fit with anyone else anybody else know any more about the hydro situation and whether or not it changes your bloodwork bearing in mind this is the first set of major bloods I had done eight months after taking hydro

Many thanks 😊 xxx

[Roarah]

Hydro does reduce certain antibodies and yes serum tests for those antibodies would perhaps be false negatives. However, were you positive for lupus or other specific markers prior to your script for hydro?

If you come off hydro and still test negative for tested antibodies you may not be allowed to go back on it. It is given to specifically lower antibodies thus hopefully lessening antibody damage so I would not take the chance of coming off it just to see if it would than raise my antibodies. The goal is to always reduce antibodies.

I have found that the course of my illness always responds better to me mentally trying to deny I have APS and lupus. I take my suggested meds but my mental mantra has been to constantly tell myself, " I am healthy and my antibodies are going away". Has it always worked, hell no. But in almost thirty years I have only had a few life threatening flares and other wise have been lucky and healthy. I am not on hydro but take a statin, warfarin and plavix, plus vitamin d and Zyrtec daily.

I just saw my hemotologist and rheumie last week and my mantra, plus lifestyle changes( tons of fiber and exercise along with weekly therapy for my anxiety ) have done their magic. All my antibodies that last December, during a very high stress period in my life, were extremely high, fell to moderate in March to now negative.

If I maintain negative serum levels we can discuss my coming off warfarin or plavix next year and if I continue after that without recurrence I can come off all blood thinners. This is my goal, to like you be always serum negative. Do not wish for your antibodies to appear, hope to keep your negative status and be thankful hydro is working do not jinx it. Your brain lessens have not progressed that is the goal and it may very well be your hydro working! You do not want to provide a reason for your providers to take that away from you.

[Buckley123]

That’s true but I didn’t have any bloods before I was put in hydro so why run a 1000 tests 8 months after !

It was my neuro that put me on it before I see a rheumatologist cx

[Hidden]

I’m with your new nurse all the way. The NHS rheum sounds great. I would definitely try to get a referral to them if you can and quit seeing Dr C?

I was on Hydroxy for 18 months - also Methotrexate injections for some time both together. During this my antibodies were all found to be normal apart from an equivocal ANA. My RA symptoms disappeared with the combination of both and it was Hydroxy that worked best for my high inflammation. My RF was weakly positive when I was diagnosed with RA but, bizarrely, no one ever checked my ANA until I’d been on Methotrexate and Hydroxy for nearly 2 years!

Later I was just on Prednisolone when I relocated and was retested. The new rheum said I didn’t have a CTD as antibodies normal but due to previous diagnosis of RA he grudgingly agreed I might have this. He refused to consider that the dmards and steroids might have influenced my antibody markers to be false negative.

It took me six months off all drugs including steroids plus another relocation to finally show a very positive ANA with pattern pointing to scleroderma. Then lip biopsy and bingo. I still think I have limited cutaneous scleroderma but seeing another rheum for second opinion on Thursday. I do meet the criteria with 3/5 symptoms of CREST and I carry a weakly positive antibody for this too. But things have been held up for me by a couple of dr twats so we will see.

So glad you had a good festive season 😊x

[Buckley123 in reply to Hidden]

Hi twitchy thanks yes it made sense to me too !

I did have a ana test which was negative before my hydro but no antibody testing that was much later at guys hospital only two months ago so a good 8 months in hydro!

But more I think even the first set it any bloods I had taken was whilst I had a steroid drip in my arm after my lp in charring cross

She also told me antibodies can definitely develop which makes sense most things we are but born with and they develop.

Crest I’ve heard of this before ! Dose it require different treatment?

I’m scared to come off it though 😌🤦🏼‍♀️🤔 xxx

[Hidden in reply to Buckley123]

I wouldn’t just come off it. See if you can get a referral to the rheumatologist first and discuss with your GP if possible.

It’s not called CREST anymore it’s called Limited Cutaneous Systemic Sclerosis. It’s rare which is probably why you haven’t heard of it. Its part of the Scleroderma and Myositis family. I’d definitely prefer not to have it as there is no real treatment. X

[Buckley123 in reply to Hidden]

No I mean I have heard of it someone in a group has crest ! No I bet you wouldn’t but it’s better to get the right treatment xxx

[Hidden in reply to Buckley123]

Sorry I didn’t read that sentence properly. If it had a treatment, other than for Raynaud’s, I’d not be so worried. But I’ve been told there is no treatment by Dr P so I’d rather “just” have Sjögren’s. X

[Buckley123]

Oh I see 🤔 I hope it’s ‘just sjogrens’ for you too xx

Do you think that me having a drip in for steroids on my first set of bloods and then hydro could have given me false negative results or do you think I’m clutching at straws xxx

[Hidden in reply to Buckley123]

Well I often clutch at straws!!! So yes I think it’s quite possible especially if your body is also very chemically sensitive like mine.

On the RA/ NRAS HU they used to say to each other to avoid all anti inflammatory medications before bloods are taken in clinic because they will give a false picture of how active the disease is. Same goes for oral and other kinds of steroids.

Rheumatologists used to take their patients off everything to cause the patient to flare up badly so they could meet the criteria for expensive biologics. I don’t know if this is still done or not. It seemed pretty cruel tbh. The rheumy used to tell me that I had only no more joint swelling or erosive damage because of methotrexate to try and make me stay on it despite terrible nausea and a strong hunch that I don’t really have RA. They said I was in denial but later it emerged that I wasn’t - I had Sjögren’s with CTD overlap rather than full blown RA.

I’m sure a good rheum would say whether you should come off it and if so allow you to retry it once they can see more clearly what’s wrong. Mind you that’s what my present rheum promised but then she never saw me again!

For me all these meds have masked my bloods - although I do always have very high inflammation levels due to something rare called hypergammaglobulemia. I believe this is associated with autoimmune diseases for some people (high IgA and IgG) but it’s not the same as autoantibodies.

I often seem to be tested for some kinds of cancer though because of this and blood in my pee and very high ESR/PV. So far no cancer so it’s blamed on my autoimmune diseases. Same goes for paired bands in serum and CSF/ LP.

I honestly think that it’s best to see an NHS rheumatologist someone has recommended. The local NHS rheumy I am to see on Thursday comes highly recommended so hopefully she will be able to see the wood for the trees and tell me honestly what she thinks.

I’m getting my full bloods done on Monday at GP practice and then maybe autoantibodies re done on Thursday if she requests these. I haven’t had any antirheumatic meds for 2 years and just a steroid jab last May - never take other pain meds or steroids so I’m thinking this should be interesting! Xx

[Buckley123 in reply to Hidden]

Thanks twitchy it can all get a bit well weird I think it’s in my head and I’m sure some people think I want to feel ill on this forum and I really really don’t but when you don’t feel any better and I look for other answers it can also be a lot worse I was looking into muscular dystrophy it massively takes over my life not knowing and trying to find answers these doctors seem to say a lot to me that conflicts what they said before and then commit to nothing in my letters ! Eds is a possibility but dose not explain it all plus my hyper mobility was only a score of 4!

The nurse said to me that seeing privet muddies the waters they test for-anything you ask because they are paid to give you a explanation and often take it back in nhs. Appointments because the have to follow certain protocols you have to tick box’s to warrant the nhs spending money on tests if it’s privet you pay sounds silly

But I never really thought about it this way before xx

[Hidden in reply to Buckley123]

I actually think I’ve told you a quite few times that I feel exactly as your nurse does about you going private.

I don’t think it’s all in your head of course - but I think the waters have been badly muddied for you by seeing too many doctors and getting all these contradicting opinions. It can become obsessive trying to find answers and I feel that private doctors might prey on our vulnerability for their own reasons.

One good rheum is all you need and this nurse’s recommendation sounds spot on.

I make an exception of Dr P because she charges half what all the others charge and she does it because there are so few rheumies with any real knowledge of Sjögren’s. She is the president of the British Society of rheumies so I trust her and her motives.

I took my NHS letters and test results to her so there was no charge for these.

For me seeing her has made a huge difference because I’d otherwise have likely been discharged by the vascular dr with “just” Sjogrens as he said he would. Also I had the derm Professor saying she was sure I have overlap CTD so I needed clarification and I think I got it in spades! Worth £160 for nearly one hour and a half? - the queue outside her office when I left was embarrassing!

People have PMd me here to suggest names of doctors I might see privately in London and same on the scleroderma FB group.

I’m grateful but I’m not interested in doing this now as my husband is a care worker and I’m unwaged and I think it can become a gravy train for these doctors too - they need to get their numbers up to attract research funding you see. My need for answers has been addressed now by one great rheumy.

From a Scottish perspective I’m very cynical about the big gun London doctors who do private work -,although I think the EDS one is likely worth his salt. And I don’t agree that joint hypermobility is same as EDS - EDS has many types and some can cause internal and vascular complications I believe. It’s a connective tissue disorder not just hyper mobile joints. I’d have paid to get tested by the London chap who is the EDS expert if I’d been younger and hadn’t already got other diagnosed autoimmunity so I really wouldn’t exclude this as a possibility either if all else fails for you.

ehlers-danlos.org/news/new-...

But it would be so much better if you could be diagnosed locally on the NHS. I have family members who have spent good money after bad on Harley Street clinics just for the placebo effect to give them a temporary fix. So I’m naturally suspicious of many of these doctors who do private work. Xx

[Buckley123 in reply to Hidden]

I replied up the first post by mistake. Xx

[MEGS53 in reply to Hidden]

Hi TT, I'm in complete agreement with your summary, particularly the comments about private and NHS Drs. And Jade, in mho you would be very wise to follow TTs honest advice. Hugs and very good wishes for 2020. xxx

[Buckley123 in reply to MEGS53]

Thanks meg I’m done with privet doctors now 🤦🏼‍♀️ they have had all my money anyway 😂💀

How are you dxx

[MEGS53 in reply to Buckley123]

Good for you! I'm ok, thanks - currently having radiotherapy for 3 weeks, so feeling extra tired, but I'm one of the lucky ones. Apparently, the little bu**er was pretty close to my ribs when they removed him! They are saying 'cure' after the therapy and 5y of hormone treatment. xxx

[Buckley123 in reply to MEGS53]

That’s brilliant meg your so strong well done you xxx

[MEGS53 in reply to Buckley123]

xxxxxxxx

[Hidden in reply to MEGS53]

Oh my that was a close call re the little bu**er Meg. And I’m moaning about the impact of the immunotherapy cream on my lip- thanks for putting it in perspective. 🤗xx

[MEGS53 in reply to Hidden]

It was a close call and I do consider myself lucky - and the NHS were incredibly good on this one. However, removal of the little bu**er, and treatment thereafter, pales into insignificance compared to the trials and tribulations we all face in the quest for clarity about our AI conditions. I mean this in the best possible way. And I'm not brave, just resolute like all of us on this site.

[Hidden in reply to MEGS53]

Yes I use a skin cancer FB group for info and honestly, despite all the fairly awful looking pics of newly removed melanomas and Bccs, I often conclude that I’m on a different planet to those asking if it’s okay to resume sunbathing on holidays now.

Or people complaining that no one amongst their friends or family understands how serious skin cancer can be. I have to restrain myself from shouting “try living with autoimmunity and skin cancer then?!!”

Compassion fatigue? No I don’t think so but extra exasperation - yes definitely! Xx

[MEGS53 in reply to Hidden]

I have a clearly defined 'treatment plan' for my cancer and the NHS follow it to the letter. If only this was possible for AI conditions......

I apologise to those with cancers more advanced than mine as they may well have a different story to tell.

[TM1970 in reply to Buckley123]

Sorry for butting in guys, I just want to say that looking for a name and getting an actual dx is very normal when you’re so ill, fighting an anonymous enemy can mean not getting the right care plan, knowing it’s just out of reach is soul destroying Buckley, please don’t worry what others think about being desperate for answers, I’m sure everyone was the same before dx, and you’ve had more than your share of ‘dr twats’ as TT calls them X

[Buckley123 in reply to TM1970]

Thanks tm1970

I can deal with anything once I know my muscles have started to burn my neck is becoming weak my left leg is holding back and no ones seems to be concerned or have any answers this with all over issues neuro symptoms joint pain headaches ect xxx

[KayHimm in reply to Buckley123]

Have you told your neurologist about your leg? What exactly happens when it « holds back? » I don’t remember your mentioning that symptom here. If it is new, you might want to contact your neurologist.

Kx

[Buckley123 in reply to KayHimm]

More hard work to move with the other one plus really bad pain in the knee I noticed a little fluid around the knee comes and goes main issue is my neck and muscles burning really bad making it hard work to keep my head up xxx

[KayHimm in reply to Buckley123]

If those are new or worsening symptoms, I would contact your neurologist. I can imagine how scary it all is.

[Buckley123 in reply to KayHimm]

Coming and going the burning is definitely getting worse xxx

[KayHimm in reply to Buckley123]

When is your next appointment?

[Buckley123 in reply to KayHimm]

End of January x

[KayHimm in reply to Buckley123]

That is good that you have an appointment soon.

[Buckley123 in reply to Hidden]

I’m really routing for you twitchy you seem to suffer more then most !

I’m in Ane at the moment I don’t hold much hope but my back muscles are burning and my throat muscles are weak !

My leg seems to be holding back my neck is heavier also )

I’m sure that’s nothing but with everything going on I’d rather check xxx

[Hidden in reply to Buckley123]

Best of luck With A&E Jade. Xx

[Buckley123 in reply to Hidden]

Thanks mate going to need it 😌🤦🏼‍♀️❤️

[MEGS53 in reply to Buckley123]

Please let us know how you got on at AandE. Thinking of you.

[Buckley123 in reply to MEGS53]

Thanks mate will do I don’t hold much hope xxx

[Roarah in reply to Buckley123]

Buckley the steroids and HCQ were given to you to do just that, lower your inflammation and any possible antibodies. They treated you as if you did have antibodies. At this stage you would still only be on HCQ with a full blown diagnosis most likely since you do not have present organ damage. HCQ is the drug I was to go on if my antibodies were still positive this month for the purpose of lowering them. It is the first line treatment in many autoimmune diseases so you are covered and safe with or with out an official diagnosis.

As to seeing the recommended rheumy I second that advice you need to have a rheumie you trust and can afford. Stay on your HCQ unless it gives you eye issues and continue to see your specialists at the recommended periods and assume for now you are safe from new organ damage for you responded well to HCQ. Your team will most likely test your antibodies and eyes regularly and if any organ or serious changes occur then explore new treatment possibilities.

I honestly think taking a break from your search for answers and certainly see one more NHS rheumie for a second opinion or to manage your HCQ in the near future and then try and trust that HCQ is treating you well by keeping your antibodies at bay and without those antibodies your body will continue to heal and you will have more good days like you had at Christmas before you know it. Positive thinking can not hurt xo

[Buckley123 in reply to Roarah]

Thanks roarah I understand xxx

[Meg52]

I don’t know anything about Hydro but it sounds as if you have struck gold with your new GP. Hope all goes well for you.

Meg xx

[Lisalou19]

Hey beautiful,

I would certainly suggest asking this question to dr C. You can email him. No harm in asking. Xx

[Buckley123 in reply to Lisalou19]

Hey just spent all night in. Ane

To be told to go back to my neurologist Ask for further investigation or a second opinion for ms

All my bloods are negative and my symptoms are neurological xx

[KayHimm in reply to Buckley123]

Did the doctor notice weakness in your leg on exam? Did they say why to get second opinion about MS?

So sorry you had to spend a long time in A & E.

[Buckley123 in reply to KayHimm]

Nope xx

[Buckley123 in reply to KayHimm]

Sorry 😐 because I had burning muscle pain and weak throat muscles twitching jolting vibrations ect and all bloods again are normal ers would be raised he said x

[Roarah in reply to Buckley123]

Did the A&E run a ct scan then and there? That could help rule in or out neurological causes instead of you needing to wait to book appointments and than wait further for new scans. You poor thing. Xo

[Buckley123 in reply to Roarah]

Nope xx

[Roarah in reply to Buckley123]

Gosh i had to beg not to have another ct scan at the emergency room last month for a left eye retinal issue. My area ED seems to order it for any little thing and then yours thinks you have a serious need for a neurologist and does not run the most important diagnostic scan to rule in or out MS , vascular issues or white matter disease while you are there for hours. I hope you can get a visit ASAP. Xo

[Buckley123 in reply to Roarah]

Exactly no one is particularly interested in me xxx

[KayHimm in reply to Roarah]

Roarah, your situation is much different. With you, they have to be concerned about clots because of your prior stroke. CTs have a lot of radiation, and they do not use them unless indicated. It would not be appropriate for an ED to work someone up for MS by using a CT scan. Their job is to rule out an emergency and then send the patient on to someone with the expertise to diagnose in the most efficient way.

Just wanted to clarify what I see as why it may seem that CTs are ordered readily. It is likely your particular case.

Xk

[Buckley123 in reply to KayHimm]

I understand 🥰

[MEGS53 in reply to Buckley123]

Poor you, Jade. But people ARE interested in you!! I think you have a neuro appt for the end of Jan? but perhaps the report from AandE will warrant an earlier appt? Maybe you should see your GP asap and take it from there? And well done for finding another GP - just hope he's better than the last one. xxx

[KayHimm in reply to Buckley123]

How are you today, Jade?

[Roarah in reply to KayHimm]

Kay, you are very correct they always need to rule a bleed out for me at this point, more than even clots. I just hate the over use I worry about all the radiation. I went for an eye exam for increased floaters next thing I know they send me to the er for more testing and it was just a retina tear, which I knew because I had it happen in the other eye years ago.

Jade, you do have a team that knows you are not well they just have not figured out exactly why yet. They would have suggested removing your HCQ if they did not believe something is awry. It is a game of guess work, testing and lots of time too often, but you will get there.

Do you keep a journal tracking you good days and bass and a list of daily activity, diet, weather, sleep hours and mood to look for common threads contributing to you bad days? It might help while you wait to see your specialists. I did this year's ago and realized yogurt was connected to my migraines with aura. Might help you too. Xo

[KayHimm in reply to Roarah]

Yes, exactly. They have to weigh out the risks of not doing a CT. I had a related experience. After a concussion, the ED doctor wanted a CT because I am on low dose aspirin. I didn’t want it. But he knew the protocol.

Xk

[MEGS53]

Hi Jade. How are you ????