RA remission?

[tina-shelley]

Hello, I have a video appointment with the rheumy nurse as my new consultant wants me to start on MTX. I was diagnosed with late onset PMR induced RA last year. My question is how do you know if you’re in RA remission if medication is doing it’s job and keeping RA symptoms at bay. Thank you.

[Madmusiclover]

If I understand your question correctly here’s my experience. Without effective drugs I was in a wheelchair and constant pain requiring help for every task. With effective medication I get good days and not so good days but am never totally symptom free just a huge improvement. I had a brief 3/4 weeks when I would say I was in remission. No brain fog, fatigue or pain. Able to be the old me. It was wonderful; if a distant memory. Does that help?

[Neonkittie17]

I’ve always understood and been told since shortly after diagnosis in 1995 that you’re only really in remission because of the medication. You stop it and the RA returns eventually. Some meds keep it at bay for longer than others.

[ruth_p]

Your blood tests should show that the inflammation is under control and you will feel more like your old self but in my experience some aspects may not go, for me fatigue and because of joint damage some discomfort that you get used to. I work full time and go to the gym and do what most people can but my knees still ache all the time but not badly enough for pain killers.

[GinnyE]

I was told I was in remission so I asked if I could reduce my meds. No. So I think you're symptom free but only because of the meds. I think the term remission is misleading.

[Neonkittie17 in reply to GinnyE]

That’s spot on and how I think of it. My rheumy doesn’t like the terminology remission or medocsl remission either and says .... the RA is being well controlled by your med. x

[Hidden in reply to GinnyE]

Same. I was told at my RA appointment in Jan that I was in remission and that she wanted to reduce my meds. No. Now I’m feeling better I want to up my exercise, I don’t want to be treading gently because my meds have been reduced. Nothing has gone anywhere…

I do feel better, but after 12+ years of this I want to enjoy that, not jinx it.

[Mall]

I tend not to think in terms of “remission” but more in terms of my RA being under control or not under control. When under control I am able to be more active and experience less pain stiffness and fatigue. When out of control or in a flare I experience more pain can do less and feel more fatigued. Blood tests can indicate how active your disease is. Many things contribute to how well controlled my disease is. Drug regime, stress, if I have overdone a physical activity, having an infection or virus. There isn’t a single answer to your question as this is different for each one of us. With time you will know when you feel at your best and your disease is under control or remission and when you feel your disease is not under control. As well as following a drug regime you will also find what else helps in terms of lifestyle choices, levels of exercise, rest, healthy diet etc again we are all individual somethings suit some but don’t help others. It’s a bit of a journey of self discovery.

[KaysDad]

Before it was a NICE approved drug, I was put on a trial for Rituximab. After the 3 six-monthly treatments of the trial, I had no symptoms for 7 years. I think that counts as remission! Now, with treatment only when I need it, it lasts 18 months to 2 years.

[Neonkittie17 in reply to KaysDad]

My immunologist told me my B cells might not repopulate for ages after Rtx when I was going longer and longer before needing to repeat the infusion, and to be prepared for them to not return for many years and sounds like your medical remission of all those years. Rtx worked on average for me for 14-18 months before I needed to repeat it but because of that and the way my B cells didn’t repopulate I had many problems with my immunity and hypogammaglobulinemia. I last had Rtx in April 2021 and It’s still working to help my RA but giving me problems as it doesn’t enable my B cells to nature enough to convert to igG and IgM so I’m not slllwed to repeat it. I think this is the closest one gets to a medocal remission with a long lasting effective biologic like Rtx.

[KaysDad in reply to Neonkittie17]

Thank you for your informative reply. I have no idea about my B-cell repopulation or even if I can tell that from my blood test results. The only thing I have noticed is an apparent increase in cold sores and mouth ulcers. I am just grateful that it has brought my life ( almost ) back to normal. I still get fatigue - although that could be old age! - and also sore feet as some joints there had been damaged before I joined the trial. For me, RTX has been a life saver.

[Neonkittie17 in reply to KaysDad]

The B cells are in a different blood test to the usual ones and often are analysed in a different lab so come in a separate report, etc. The results are not always given to you unless you ask. Rtx was friend and foe to me .. but then many meds can be like that. Glad it’s working well for you.

[nomoreheels]

You've sort of answered your question, that being controlled (or remission) is when symptoms are at bay. This is clinical (or medical) remission, you've achieved it by medication. Blood tests would be showing a downward trend, but shouldn't be wholly replied upon, mine aren't always & I can't be alone in that. Your Rheumy, if you're fortunate enough to be seen in clinic presently, will determine it better by examining you & working out your DAS score. A score of 2.6 or lower indicates disease remission.

I hope you find MTX works well for you. I've been on it 14 years, the longest serving of the 4 DMARDs I've tried.

[tina-shelley]

Thank you all so much for taking the time to answer my question. The reason why I asked is because as a former PMR patient (now in remission) it was easy to know when I was in remission as the medication regime is a reduction of Prednisolone verses symptoms until there's no more symptoms and therefore no more medication. The remission lasts until the symptoms return (if you're unlucky).

However when I was diagnosed with RA last year I obviously wanted to research the condition and with so much reference to 'remission' I couldn't work out how you'd ever know if you were in remission if the level of medication you're taking remains the same.

I have been avoiding MTX and only agreed to take Hydroxychloroquine 200mg twice daily but even I must concede that this medication alone has had little or no real impact on the RA symptoms so at my latest consultant appointment he persuaded me to try MTX along with the Hydroxychloroquine which they eventually hope to reduce.

It was supposed that I had late onset PMR induced RA but the more I think on it I believe I've probably had RA symptoms for at least 12 years. The first 2 years I ignored the pains in my thumbs and knuckles and the mild Carpal tunnel. Then PMR symptoms appeared and when I was given Prednisolone to treat the PMR inflammation I think it also reduced all the RA symptoms too and it was only when I went into remission with the PMR and thus no Prednisolone that the RA symptoms reappeared after 2 years.

I have a video chat with the Rhumy nurse who will explain all about MTX and obviously I hope it works as I still have such pain, swelling and stiffness in my hands and as for my knees.....let's just say I won't be going to church anytime soon as the congregation would have to help me up after kneeling!

I am 62 years young!

Thank you everyone.

[helixhelix]

I think you’re possibly right thinking the pred for PMR masked the RA.

There are a very few people who do manage a complete remission without drugs, but very few.

I thought I might be one of them as I had been stable for a while (good blood tests results and feeling good) so we started tapering off drugs. A bad mistake!!

I’ve been taking MTX for over 12 years now and wouldn’t give it up! It’s beed great for me.