Hello there!!!

[Maximdewinter]

Hello, just joined - I want to talk about Rheumatoid Arthritis mostly. I was diagnosed in March 21, started on Methotrexate end of november 21, informed of clinical remission early january 22 which has continued through to may 22

[MadBunny]

Hello from me. Good to hear that you're in remission - long may it last !

[Maximdewinter in reply to MadBunny]

Thank you MadBunny - nice to be told I'm in remission but also confused about how quickly it happened - I had only been taking methotrexate for 4 weeks - starting to wonder if i was misdiagnosed

[helixhelix]

Methotrexate can be a wonderful drug!

[Maximdewinter in reply to helixhelix]

Hello helixhelix - i had been taking it for just 4 weeks when I was informed that I was in "clinical remission" - so wondering if I needed to be taking it at all and thinking about not taking it anymore - my consultant wants me to keep taking it - been in remission for nearly 5 months, I do think it is thinning my hair somewhat - but that is the only side effect

[helixhelix in reply to Maximdewinter]

Ha! I had the same thought many years back. A very big mistake!! MTX can work very quickly, and get you into remission quickly. And if you stop taking it things can bounce back very quickly too!!

My suggestion would be that once you are very stable (maybe a year) then talk to your rheumy about tapering off it. If you have a good lifestyle this could well work and you will stay in remission without drugs. This does work for a few lucky people!!

[AgedCrone in reply to Maximdewinter]

Hang on in there..you could have Palindromic Arthritis.I started off with that…..for two years all my aches & pains came & then went away completely..…only to reappear a month or two later.But then they came & stayed as Sero+RA.

So I’d do as your rheumy advises until things are clearer….I have very little joint damage…& I think that is down to the fact that I stayed on DMards….Even when I had no symptoms.

[nomoreheels]

Hiya Maximdewinter, welcome. I hope you enjoy being here. We've lots of experience between us that we can share. Whilst you will find you're outnumbered by us girls we do have some gentlemen who will hopefully be along to welcome you too.

I've been on MTX since 2009. Out of the 4 DMARDs tried it's the longest serving. I hope you continue to be well controlled on it.

[Maximdewinter in reply to nomoreheels]

Thank you nomoreheels - yes I do want to learn about other peoples experiences - especially at the initial stages - there was a lot of confusion around mine - I started to have some joint pain in my knee. hands, shoulder (summer 2020) around the same time I supposedly had Covid (i had no covid symptoms though I tested positive for covid antibodies which suggested I had had the virus at some point). I also had flare ups around the time of covid jabs/boosters - the RA diagnosis came out of the blue in march 21 (very early stages) but by november (after a flare up) they put me on MTX - 4 weeks later I was in remission - had very little joint pain since - just a twinge now and again (I have a physical job). Starting to think I have the wrong diagnosis - possibly

[nomoreheels in reply to Maximdewinter]

It's feasible that your current disease status is due to starting meds relatively soon after initial symptoms. This is why it's important that meds are initiated within 3 months & the target remission rather than low disease activity. I would say you've responded very well & promptly to MTX. If this is still the case at your next review, & if it's not initiated by your Rheumy, maybe question if your dose could be reduced a tad, to see if you remain in remission. Please don't stop any of your meds without the ok of your Rheumy, that's not the best way to see if they are in fact working & the resulting symptoms confirm you still have RD. It may also be more difficult to achieve remission if you remain off MTX for several weeks, causing it to work harder when re-starting. Your Rheumy wouldn't have prescribed your MTX as your initial DMARD if he wasn't confident in his diagnosis. The extent of your symptoms & joints warranted it. Taking myself as an example, when I went to my GP I’d only had active disease in my feet but fortunately she was a GPwSI so was referred, diagnosed & on treatment within 6 weeks of first symptoms. As a result my first DMARD was hydroxychloroquine, which worked quickly, only adding MTX around a year later.

Stick around, lots of help here if you need it.

[oldtimer2]

I would be inclined to discuss with the rheumatology team whether you could start to tail down the methotrexate. It isn't a good idea to just stop it - you may find that everything rushes back!

Presumably the diagnosis was made on the basis of your blood tests together with the clinical picture. In view of the fact that so many of us have problems being diagnosed becasue it is not clear -cut, it would seem unlikely that the diagnosis was incorrect - but, of course, not impossible.

[bienassis in reply to oldtimer2]

Yes, this would be my feeling - lower the dose rather than stop. It can always be raised again if you flare badly. I have more than 20 years experience of MTX - it has served me well. Other drugs come and go but MTX is the basis of my treatment. I gave up a biologic in January that I had I started just over 2 years ago - it was having a bad effect on my heart. I'm continuing on MTX alone and wish now I'd stayed that way. No bad effects at all since the start of MTX in 1998 - but a bad flare in 2019 after a fall persuaded my Rheumy to combine MTX with a biologic. Well, you live and learn!

Not everyone is so lucky with MTX, of course. We are all individuals and respond differently. This difference in response is one of the frustrating things with RD and emphasises the highly complicated nature of the disease, unfortunately.

But here we all are sharing our experiences. I find it very instructive and, judging by the large number subscribing to the Forum, it is proving helpful to many sufferers of not just RD but many other auto-immune diseases.

[HappykindaGal]

I’d mirror what others say. I was in remission and reduced mtx. I’m now in a big flare and can barely walk at all so increasing mtx again. It’s a fickle disease that doesn’t play nicely.

[medway-lady]

Aged crone has summed up my RA story it came back and never left. Chemical or drug induced remission is great but it stands to reason if you stop the drugs the condition returns and it could come back with a vengeance ! So like others have said it might be best to just take the pills and forget it. The main thing thing is if you tested positive then there really is no doubt but if RA negative then it just might be different but ask yourself is your quality of life with RA improved with MTX ? if it has why change it?I'd listen to your RA consultants advice and give it at least a year. In my case aggressive treatment in the beginning has meant RA isn't a huge problem despite having the disease for many years. Only my right hand shows the presence of RA and thats because I take AZA and Abatercept which might be causing another problem and has been paused temporarily so I'm not looking forward to next couple of weeks as if the Ezxcema goes it is onto a new medication if not a trip to a Dermatologist. RA just loves surprising us all.