Before & After Treatment

Before treatment:

How I felt? a couple of swollen fingers, stiffness in the morning, sore ankle

Labwork? negative ESR, negative CRP, good hemoglobine, positive RF

After treatment:

How I feel? extremely painful hands and feet, limited function and mobility most of time

Labwork? poor hemoglobine, high ESR, high CRP

What is the treatment? MTX + Plaquinel

Doctors: one said this pain is temporary ( in pain for more than 3 months so far)

The other said: this can never happen !!!

My thoughts: do I really have RA?

Am I taking the right meds?

Am I seeing the right doctors?

Do I have a weird incurable very changeable disease?

P.S. Both doctors said I'm in remission in the last visit.

4 Replies

  • Hiya Hala. I'm not sure what you mean by 2 doctors. Do you mean your Rheumy & your GP? If so you're best to be guided by your Rheumy, he's the Specialist after all & is better placed to know what to expect of the meds he's prescribed you.

    Another thing I'm not sure about is from your previous post you'd said you'd noticed some improvement. I take it this not the case now? I ask because I started my treatment on hydroxychloroquine (Plaquenil) & it became less effective so methotrexate was added. Double therapy didn't control me either so HCQ was withdrawn leaving me with MTX plus the normal NSAIDS etc. At the same time I was prescribed injections rather than the tablets I'd been on for a year & the difference was quite remarkable. I've now been on MTX for nearly 7 years & on the whole except for the odd flare I've been reasonably well controlled up until recently when it was confirmed I have disease activity in my feet. That said I think that's been the case for nigh on 2 years but as my Rheumy dismisses my feet it's been left & caused considerable problems. At my last appointment she did check them over & as a result wishes to increase my dose from 15mg to 20mg which we are doing in 2.5mg increments as I have history of jumping to 5mg & it affecting my liver.

    Unfortunately as your question is a bit sketchy I can't quite work out if you're wanting to know if you need a different diagnosis or whether you've even been told what you have re seronegative/seropostive RD or another related autoimmune condition. Sorry if it's not clear but struggling a bit for where to go with your questions. Is it a second opinion you're wanting? I don't understand how you can be informed you're in remission from what you've bullet pointed so it's a mixed message really. Can you help us help you? Obviously we can't diagnose, that's your Rheumy's job & he appears to have done this but you don't seem to understand why or if that is actually the case, is that right? You're aware that there is no quick fix & what treatment suits one person doesn't necessarily suit another but it's the remission tag I don't understand if you still have such problems. Blood tests aren't the only thing to concentrate on, it's an overall view of how the disease is which is where the DAS score can be useful but not the whole answer. Do you know if this is what your Rheumy is basing his opinion that you're in remission on? Do you know if your DAS score was below 2.6? If so this is considered to be in remission, drug induced remission but remission nevertheless.

  • I see two rheumatologists for second opinion. Yes, I'm in continuous pain for more than 10 days after I experienced relative improvement.

    I am confused and I started to think what if I dont have RA and they just around with my body. What I have been told is that I have RA, positive RF and positive anti-CCP.

    In the last visit, two months ago, my two doctors told me I'm in remission but without doing the DAS.

  • I understand now! But are you sure neither performed a DAS 28 on you? I used to have examinations when living abroad but I wasn't aware it was a DAS examination until I joined this community, I just had a full body examination! It was never mentioned but I now know a 48 point test was being performed every 3 months.

    l'd think as your blood results confirm there's little doubt you have RD, but much depends on the figures as to how severe or advanced the disease is. This link explains

    I think what is probably best if you're still unsure is to ask your Rheumy to explain to you or if your review appointment isn't due ask your GP to explain your tests results & what they mean.

    Good luck.

  • I understand and relate to your post entirely. However I don't think even rheumies have all the answers about the complexities of RA and the autoimmune process. All I can say is that three months may feel like a very long time to you but it's actually not that long at all in rheumatology terms. These drugs can take quite a long time to get things controlled and pain isn't always a very reliable indicator of active disease I'm afraid. Our brains sometimes clock pain quite differently to what our blood tests reveal.

    I always feel remission is a strange concept with a disease that's as insidious as RA or other closely related conditions such as Lupus.

    Hang in there and I hope your pain receptors catch up with your blood markers very soon.

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