Just getting worse

I am on my 3rd DMARD, luckily no side effects on sulfasalazine but next week I will have been taking it for 3 months. Well... I feel 100 times worse than ever. I have 4 extremely swollen painful joints as well as feeling exhausted. I am really worried that the next lot of treatment is not going to help me either. I'm due to see my consultant in a couple of weeks. I think I might have to go on biologics. Just wondering if anyone has been in my situation, where DMARDS haven't worked but other treatment has? Also what side effect has anyone had on biologics. Thanks :)

8 Replies

  • I have struggled with DMARD's - my body does not seem to like them and made me feel worse. I am currently taking Abatacept with 200mg hydroxychloroquine (tried higher dose but reacted).

    I have been on various biologics on their own for the past 10 years. For me their side effects have been much less of a problem than with DMARD's. Again though it is a trial and error situation to find the right one that suits you and will depend on the protocol of your rheumy dept which drugs are offered first. NRAS website has information on the various drugs available, some are hospital infusion and others self inject. Farm

  • I've tried hydo but they affected my eyes. I have an app in a couple of weeks with my consultant so I'll talk to him. Thanks for your reply.

  • Hi there, sorry to hear you're suffering :-( I don't know anything about your medication, I had methotrexate and lots of other things before than never helped at all. I was offered biologics as a last resort (because it's super expensive and the NHS don't want to pay it!)

    I've had one Rituximab infusion in August 2013 and never looked back! I'm still taking hydroxychloroquin and dropped down to 5mg steroids but my life is completely different now all thanks to the Rituximab! I can get dressed on my own (buttons and all!) I can take my dog for a decent walk, I can work full time, run up and down stairs, gardening, all these wonderful things and more I couldn't do every day and now I can! I haven't had any side effects at all, they say you can get more infections and pick up illnesses easily, but if you're careful it's fine. I haven't had any illnesses or infections, I had a few colds but nothing that 'normal' people don't get and not excessively. So don't worry, and go for it if you get offered it! But remember what works for me might not work for you, so it might just have to be a trial and error until you find the right thing for you, but keep pushing your rheumy doc! I found they're better when you nag ;-) good luck! Hope you feel better soon and find something that works for you xx

  • Thanks for your reply.

    I will mention it when I see him in a couple of weeks. I've tried methotrexate hydro and currently on sulfasalazine. Hopefully because I've tried 3 with no success they will offer me biologics. I'm under guys in London. I work in a school so really prone to pick up infections but haven't had any for months now. :))

  • H there

    I am in exactly the same situation as yourself. I have tried hydroxy which didn't work and now on MTX and sulfasalzine since August but I am still having flare after flare so next appointment in March i too am hoping for biologics, which was discussed at my last appointment where my das score was 6.2. I just want to feel nommal again, I am hopeful that these bio drugs will work. and for you too.

    Good luck

  • Keep me undated would love to hear how you get on. Good luck ;)

  • I'm on Humira after failing MTX and Sulfasalasine. The first two injections caused awful headaches but I've had no side effects since then. Clemmie

  • That's great I hope I can tut something like this. I can't even walk this morning, both feet are so painful :((

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