RA or Lupus

Well its nearly been a year since I lost put a blog on here so I think I might today :)

Right I was told I had Rhuematiod arthritis on the 1st of april 2011 and now im being told they dont actually know what I got but they think it may be RA or Lupus or even both .... what do I do? I've been put on a different medication as the methotrexate wasnt working for me but still on the hydroxycloriquin ... just want some friendly advise peaple :D xxx

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  • Hi Jade, I was initially told I had RA and was put on Sulphasalazine then Methotrexate. I felt rotten on both medications and had a dreadful few months. The pain in my hands went away but the fatigue and mental fogginess got worse. A few months ago, I was told it was not RA but Lupus or Sjorgens and taken off MTX. Now I am on hydroxy and have a definite diagnosis of SLE Lupus. I am now so much better and coming to terms with new diagnosis. Still suffer fatigue but now managing this much better. I felt totally confused and all over the place with the uncertainty, particularly after finding out about RA and telling my friends and family all about it. However things getting better now. There is so much overlap between all these conditions it doesn't really matter what label you have, as long as the treatment is giving some relief. Keep talking about how you feel as this really helps, I wonder if your rheumy nurse can put you in touch with some other young people in the same boat as you. You really aren't alone in this. Hope you get the answers and support you need. xx Jo xx

  • The diagnosis actually matters a lot less than the fact that they are treating you. Hydroxychloroquine is something that is used for either SLE or RA so thats an appropriate drug to start with. If they aren't sure but know you have some kind of rheumtology problem then thats the best thing to do -just start treating, keep testing, keep watching for how things develop, then at some point you will get your diagnosis. You can have both things, and you can have something that combines features of several things (either undifferentiated connective tissue disorder or mixed connective tissue disorder). None of these diseases are easy to diagnose, and most of it is about the rheumatologist just watching you over a period of time.

    In the meantime, try and relax about it as much as you can, and make sure you keep on giving feedback about how the treatment is working and what problems you are having. If you really have problems with the medications, then make sure you tell your doctors that too - there is more than one way of treating you so you shouldn't have to put up with drugs that cause you to feel worse. Hopefully you will start to show some improvement soon.

  • After having had the label of RA for many years, the consultant now refers to my condition as auto-immune connective tissue disease. This is because it has affected other bits of my body, not just the joints.

    The actual label doesn't make much difference, the treatment for auto-immune diseases is all much the same - and trial and error, so it takes time for find the best treatment for your individual body and disease, and this may change over time as well, just to make things more complicated.

    I used to be fine on hydrochloroquine - but the last time i was put back on it, I had a reaction, so now can't take that one either.

  • Hi Jade, welcome back to the site. I often wonder if mine is actually lupus because I have so many strange and invisible symptoms with it and the joint pains in hands are the same with SLE but it's a more systemic disease so the inflammation doesn't show as much. The first line treatment for Lupus is Hydoxichloraquine which I take too because it's used for both. As others have said all these are serious autoimmune diseases and it's the treatment that counts but I know too that it's really helpful psychologically to have a name.

    It will all unravel itself eventually I'm sure but meanwhile I would concentrate on looking after yourself as well as you can and making contact with others with both of these conditions so that you feel well supported by people going through similar stuff. Tilda xxx

  • hi Jade

    Bet you are frustrated with all of this, i agree with everyone else about "being labeled" but then start to think ,well I would like to know I definitely have this or that condition, so its a bit of a catch 22 situation. But importantly you are being checked and given sensible mediation and advice. They will eventually come to a firmer diagnosis I think.

    Try not to worry too much though as avoiding stress will help you avoid feeling more poorly although i know that's easier said than done. But thinking of you, and I don't care what the label is if not RA, keeping writing and blogging as its great to hear from you again. Axx.

  • I am really worried though because im the type of person that always wants to know what is wrong with me so not being told exactly what i have is upsetting :( and omg im always so tired and dont sleep well at night :/ so fed up with it all the pain the sleepless nights the constantly being ill :/ im just glad i have you lot to help me and give me advice <3

  • Thinking of you, hope you get some rest/sleep tonight. xx Jo

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