Where would you say I'm at?

Hello, I have RA and inject MTX having failed on Sulphasalazine. My ESR is down in the 20s now but my bloods tend not to tell my story anyway. My RA was deemed to be "mild" but my hands are so stiff and swollen that I am struggling to do my duties at work most days. If things dont improve my nurse will speak to consultant about next steps. She seems to think the MTX isn't doing the job and always acknowledges my swelling.

Some days though I wonder if this is just the way RA of the hands is? The stiffness and pain seems to last all day but I thought it was only meant to last a couple of hours early morning? I know that dual therapy is meant to be best and Hydroxy has been mentioned but what if he won't do anything?

Do my symptoms ring a bell with anyone? Is there a chance that I will be able to use my hands properly again? I have been on MTX for well over a year with a few breaks due to infections. Diagnosed 2 years ago. I will read up on MTX and Hydroxy as a combo but just wanted to ask others if it has worked for them. I like to pretend I don't have RA but I suppose I really do and it doesn't feel "mild" at the moment.

Thank you, J.

6 Replies

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  • I have had RA for years, and take MTX, Sulfasalazine and Hydroxychloroquine.

    My hands used to be dreadful, and have improved over time. I had a lot of help from the OT and the Physios. And there are all sorts of therapies like hot wax, cold compresses and special exercises.

    Splinting can help too. Oh, and special "putty" for exercising finger muscles.

    Perhaps you can ask for referral to OT or Physio? Hope so!

  • I'm on the triple cocktail too, and it works for me tho' took an awful long time. There were times where I was despairing of things improving but eventually it did. It sounds as if you do need to talk about a new drug approach to try to get more improvement, as doesn't sound good enough yet. Oh, and my ESR is now down to 2! Polly

  • It should be able to be better than that, as long as you don't have major permanent damage already. If you have given MTX a good shot (6 months or so) then definitely worth asking rheumatologist what else can be added in. While some people are lucky to get excellent results from just a single medication, most folk do need more than one, and there is some very good research evidence for adding in extra meds, starting with either MTX or SSZ as the base one, rather than just trying different ones one at a time.

  • It's good to hear that improvement can happen. I do have splints but they only help with the lifting of heavy things or when resting in the evening. It's my fingers that I have the most trouble with. Intricate stuff, writing etc. It's more than a year since I started MTX so I feel as though I've given it a good try and am willing to keep taking it alongside something else. When my last x-rays were done there didn't appear to be any damage so I was thankful for that, though it did show mild Osteopenia. I will definitely make sure I keep pushing for a change though and thank you for your help and advice.

    J

  • Hello. I'm in much the same boat re the meds you are on although I've also tried Hydroxy but it didn't appear to make much difference - the injectable MTX is the great drug for my RA but I'm just not able to tolerate it at any dise above 12.5 it seems. I too have not yet sustained any erosion in my hands despite swelling - never quite sure why the doctors feel I need such heavy drug as MTX? But two of my knuckles are always a bit bigger than the rest and go puffy and pink over night always. I'm used to them being tight and stiff and a little more feeble even when not in flare. As Phoebe says there's therapy (hot wax bath) and exercises that do help prevent fusing of joints etc

    You say mild and I say this of myself but I don't think mild RA would warrant MTX and I'm actually not sure there is such a thing as mild RA anyhow - just non erosive perhaps? If you look at some people they have very erosive RA so I suppose that counts as very severe but even if the rest off us start of in the mild group - it can gather momentum or sneak about I guess. Yours doesn't sound that mild to me at the moment. I would be asking for review of meds urgently if I were you. X

  • Hello Tilda, thank you for that. I hadn't thought of it in that way re MTX not being prescribed for "mild" RA! I am on 20mg which is quite a high dose and I agree that, if this is indeed classed as mild, my heart truly goes out to all of those who have more severe disease.

    I woke at 4 this morning with my hands quite numb and I think I do need to look at exercises. at the moment I squeeze a stress ball and that's it. From what you've said it seems that the stiffness may be something that stays with me even if I do get some control but I will certainly push for something extra otherwise I will have to consider leaving my job. I hope that your 12.5mg holds things at bay for you. Sorry to all who've replied but I haven't been here long enough to get to know individual situations.

    The surprise this morning is that I have "sprouted" a growth on my foot overnight! It's painless and exactly where a bunion would be, on one foot only, but there is another lump on top of that so it looks as though I have 2 "knuckles" on the side and top of my big toe joint. Interestingly though, I was stopped in my tracks with horrendous pain in exactly the same place about a month ago but nothing since. It's normal colour but when I stand they look very white as if bone was trying to push through skin. I know it's not!