Rheumatoid remission

Bmena

Hello

Two years after being diagnosed I am in the very lucky position of having no active RA. I am still taking Methotraxate but would like to stop. Has anyone else done this and if yes how did it work out? My Rheumatologist has worried me about flare ups. I have never had one but she says I could if I stop the Methotraxate and she is not very positive about drug free remission.

Thanks

stickywicket

You don't say what dosage you're on, Bmena. I think 'drug free' might be a step too far but would (s)he be happy for you to reduce it?

Bmena

Thanks Stickywicket
Over the last 6 months I have come off Plaquenil (I was originally on 2 DMARDS) and reduced the Methotraxate from 6x2.5mg to 2x2.5mg. I don't even know if 5mg is a theraputic dose but I feel fine on it. The worst bit of the disease for me (and I know I have no grounds for complaint compared to others who suffer a lot more than me) are the monthly blood tests which I truly dread. The Rheumatologist has suggested moving me to Sulfasalazine because it requires less blood tests but I am reluctant to do that in case I get side effects.

stickywicket

To be honest, Bmena, you're on a very, very low dose. It's very normal to take Plaquenil (Hydroxychloroquine) and Methotrexate together (I do) and if you've managed to get off the Plaquenil, well done you.

I do sympathise with the desire to get off all meds. There was a time when I would have tried too but...........I guess it's risky.

Just to put your dosage in perspective, I started on 22.5mgs of Methotrexate. I'm currently on 17.5mgs and planning on maybe reducing to 15mgs soon. I've never had any problems with it.

dreamdaisy

The only way to find out is to stop but who knows what hell could be unleashed if you do? I have no idea why you want to stop:you are one of the very, very few for whom it appears to work, and work well. It's true, isn't it? No-one is ever happy with their lot in life. You are having the life I thought I would have when I started the sulph, then the meth, then the lef, then the cyclosporin, then the anti TNFs and the rest. I am off to scream my rage and frustration into a pillow, but before I do that, I do, sincerely, wish you well and I honestly hope your RA does not worsen any time soon. DD

frogmorton

Hi Bmena

Gosh - you have done well...bless you l HATE blood tests too I KNOW it's silly but for me they are truly VILE!!!

How woudl you feel about trying the sulfa? Is it worth a teeny tiny try while you are still on your MTX????

you can soon knock it on the head if it gives problems.....and have burnt no bridges.

Love and WELCOME

Toni xx

Cez

I am allegedly in 'clinical and sonographic remission' meaning my swelling, stiffness and pain are greatly reduced on examination in scans but my inflammatory markers are still raised and until they were all under control, i wouldn't touch my meds. What worries me is the RA flaring up and doing damage before the flare up becomes apparent. To me, taking the tablets is no bother, it probably takes less than 5 minutes out of my wk, being unable to walk properly before i started my meds wasted far more of my time!!

Be careful about going drug free, RA is a powerful condition and may always need a little something to keep it at bay!

frogmorton

collywobble wrote:

Hi Bmena

I was wondering, if it's the blood tests which are the horror for you in all this (and thankfully I'm not needle phobic, so can't imagine how awful that must feel), might your rheumatologist consider putting you on 2 monthly, or even 3 monthly blood tests? If you've had no problems with MTX, and you're on a low dose.....might it be worth asking?

Good luck with it all,
Lynn

Now THAT is a good idea

well done Lynn

williamlargs

Just noticed this thread.

I was diagnosed in 2003 and immediately put on sulph. Afetr a few years like you my RA ceased to be active and i was allowed to come off the drugs. Last year it flared again and i am now on meth 20mg. Once again I am in remission but won't be in such a hurry to come off the drugs unless advised to.

I understand where your coming from and would like to be drug free but still think 8 meth tabs a week is better than 21 diclofenic and god knows how many paracetomol along with them. This is what I was on along with my meth until October last year.

I'm only blood tested every 3 months if that helps at all.

williamlargs

Also can't believe you were being doubted as genuine. I realise there are a hell of a lot of poor souls on here but RA can and does go into remission in some cases.

Thankfully I am living proof that it can. I am also not so stupid as to think that it will never come along again and bite me square on the bum.

Please go easy on the thread starter.

salamander

This is an interesting topic for me as I had a scan on my hands a few weeks ago and the ultrasound consultant who did it said I was 'in remission.' i.e. no sign of swelling or inflammation in them. However, I am steroids plus anti tnf and have pain in many joints, particularly my wrists, stiffness in the morning, limited mobility still. So - how on earth could it be that I was in 'remission'?

I think it is a misleading term. My view of remission is that there is no sign of active disease and that I wouldn't be reliant on steroids still. Steroids mask everything, according to my rheumy consultant. I would agree that I was better than I was six months ago but I have pain every day still. Also am getting a lot of minor infections which mean I can't take my anti tnf, sometimes for a few weeks at a time and the arthritis comes back to bite me very quickly. If I reduce my steroids, ditto.

I am very dubious about the word remission and would be very wary of coming off the meds. Well, that is my experience anyway.

williamlargs

I think your correct Salamander and 'remission' possibly is the wrong term to use. When I went back to my GP last year he referred me to my rheumy as my RA was 'active' again.

I do think that in rare cases it can stay un-active and some of us can always hope.

I've often wondered what triggers it and used to think stress at work or home possibly was the culprit. Thing is when my RA became active again last year I was probably going through the least stressful year I had had at work for a long time. Home life was fine too as it usually is.

Sorry folks I'm thinking too much about it and will stop now :???:

caprica

I think the previous advice is very sound, I would see about changing your blood test frequency and stick it out with the mtx at least a couple of more years. I think if you've not had ANY activity at all for maybe 5-6 years then it would be possible to think about coming off them. However, if I were you I'd probably still stay on a very low dose, just in case! This RA is a tricky beast.

Ive had RA almost 2 years and i'm 95% fine but still get mild symptoms here and there so I know it's still rumbling away at me somewhere. Even if I had no symptoms at all I'd still stay on my meds unless they were causing me horrific side effects - too scared of developing severe RA to take any chances!!

Good luck, and I'm glad to hear you're feeling good! We are very lucky.