What to do?

Hi again, i joined a few months ago after testing positive to an ANA test. My result was 1:640 homogenous. My anti dna test was negative but recently my inflammatory markers were raised and my Dr thinks i have a connective tissue disease so she wants to start me on a course of Hydroxychloroquine. The Rheumatologists letter, which i didnt get a copy of so havent read, said that there was possibly 'slight skin envolvement'.

(I do have red cheeks at times and asked last year about malar rash but was dismissed as 'reading too much online')

Is it wise to start treatment when we dont know which type of connective tissue disease i have?

I also have me/cfs which leaves me housebound and severely fatigued.

Ive had an MRI test done on my head and neck but that was 4 weeks ago and i havent heard back.

Since Christmas my tongue has been sore and burning and 'gets in the way' when i talk. Its as if the tongue as a muscle just gets too tired to work.

I just wondered if anyone had any ideas.

Thanks, Kate

13 Replies

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  • Yes, absolutely - your autoantibodies markers are high enough to suggest autoimmunity and hydroxy takes effect after 2 months, so it's good that you're starting now. If in the future symptoms go worse, or the hydroxy isn't enough to control them, then of course, you'll need to have a discussion about what supplemental drugs you need.

    Most connective tissue diseases respond to hydroxy, steroids and immunosuppressants so although it is useful to know which one you have so you can monitor symptoms, treatment-wise there is very little difference.

  • Hi Purpletop.

    I react quite badly to medicines in general so was a bit concerned to start this treatment. However, if it works it would be fantastic so i'll give it a shot.

    thanks for taking the time to answer.

    Kate

  • I have been taking hydroxy for four years now. My diagnosis is somewhat vague, it's 'undifferentiated autoimmune disease' - some features of Lupus, RA, Sjogren's, connective tissue problems and poor lung function. Hydroxy seems to be the first line of defence and it has certainly helped with some of my symptoms. Good luck, I hope you get a good result.

  • Hi Grannyjogger,

    This whole autoimmune thing is strange isnt it? Maybe my diagnosis will be vague too. The edges between me.cfs, fibromyalgia and connective tissue diseases seem very blurred. Im glad the Hydroxy has helped some of your symptoms.

    Thanks for your input - im less worried about trying the drug now.

    Kate

  • These illnesses tended to be given what we recognise as names originally based on the symptoms that someone described and - more often than not - called a "syndrome" or "disease" using their own name for posterity!

    These days they are more likely to classify them on the basis of the laboratory findings in blood and tissue and slowly the names are changing amongst the experts though not always amongst the GPs (if they have ever heard of them at all). If a patient has symptoms of more than one autoimmune disorder they often just write "cross-over connective tissue disorder" which covers a lot of bases and acknowledges this is a real disorder, just they don't know why. To Joe Public it sounds vague and dismissive - but it isn't really.

    As for which medications are used - they often do have to try something that they know calms down the immune system and hope it calms down the right bit. Only when you know the mechanism of a disease can you treat it with any degree of certainty - and they generally really don't know.

  • Hi PMRpro,

    Thanks for replying. What you say is interesting. Im having trouble knowing which symptoms (if any) are me.cfs, which ive had for years, and which symptoms are Connective Tissue.

    Maybe time will tell.

  • There are a lot that are the same - I've almost certainly had ME/CFS and now have polymyalgia rheumatica which also overlaps with them both judging by a friend who has a conn.tissue diagnosis which nothing really seems to help for her so she gave up the pills.

    The whole autoimmune thing is a jigsaw puzzle with the corner pieces missing and half the picture to boot... Ah well

  • Im going to give up gluten for a while, as i eat far too much bread, to see if it helps at all. I have gut issues. Dairy free has helped a lot with some symptoms.

    Good luck to you PMRpro. I hope you find something that helps eventually.

  • I don't normally eat bread and ordinary pasta - because I can't eat modern highly processed wheat without developing an itchy rash. I can eat rye, spelt and kamut without problems so it isn't the gluten, it is something else in the structure of that sort of wheat. I can also eat French bread - which I gather is quite common (even the NHS site says so!) as they use soft Canadian wheat rather than the hard wheat used in bread and pasta here.

    If you are giving up gluten - read ALL your labels - it is in EVERYTHING! And don't make the mistake of using manufactured gluten-free substitutes. The stuff they make them from is VERY calorie dense and has loads of sugar and stuff to make it taste more like "normal". All my coeliac friends said they had no problems with weight until the supermarkets jumped on the gluten-free bandwagon and they were tempted!

  • The diet im looking at is an autoimmune diet and is very strict but only for a month initially. Everything will be natural and home-made- hope my energy levels are up to it.

    Sweet potato with steamed veg today. No nightshades, potato, corn, sugar or dairy.

    I hope i can stick to it but there are then other issues to do with Ketones which ive yet to understand.

    Thanks for advice. Yes the gluten free blueberry muffins were calling me from tesco online! I resisted- for now!

  • Hi Yes I would say start treatment, I'm on hydroxychloroquine for Lupus, It sounds like your Drs are trying this treatment to see if it helps ......It's worth a try - - - give it at least 3 months to properly take effect.

    For me it doesn't totally stop the fatigue and aches& pains but it does help me be more "stable" with my symptoms.

    I was told I probably had cfs (as fatigue my worst symptom) until my ANA showed up strongly positive 1:640 ( like you my anti-DNA etc were negative) and my diagnosis was changed to Lupus as I also have sensitivity to UV/ sunlight .. makes my symptoms worse, hair loss, aches in joints, and used to get mouth ulcers. I also get "brain fog" where I find it hard to concentrate or I forget words for things and allthough this is not "officially" a lupus symptom many people with lupus do also get this

    Lupus can be hard to diagnose so your Dr may be reluctant at the moment to give you a definate diagnosis.... Drs usually look for at least 4 out of 11 things to be present to arrive at a firm diagnosis of lupus .. here's a link to them ...http://www.lupusuk.org.uk/diagnosis/ Also there are some "alternative criteria" that are also worth considering ... lupus-support.org.uk/Crit.htm

    It is worth seeing and noting if you think any of this fits you

    By the way the charity Lupus UK are good for info and even have DVD that may be useful to you lupusuk.org.uk/newly-diagno... They also do a progress diary which may be useful if you want to keep a record of your symptoms and how you are doing so you can show your Drs next time you see them

  • Hi fabwheelie,

    Gosh, you could be describing me! My brain fog is awful, i have a sore mouth, and my neck and hip hurt. I think my hair is falling out but my Rheumatologist said it had to be in clumps which it isnt and the fatigue is just beyond belief.

    Thanks so much for the links. I will try the diary idea too.

    Can i ask if you have tried any dietary changes like the autoimmune diet or going wheat free to see if it helps- along side the medication.

    I hope you find some improvement soon.

    Best wishes Kate

  • I just try to eat healthy with lots of fruit and veg, plus omega rich fish. I don't eat much wheat as it bloats me, but I don't think wheat makes any difference to my lupus

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