I was diagnosed with RA in January. At the time I was really suffering. Mostly involving the tendons in my hands. I couldn't cut up vegetables, pick up a cup or do up my bra. It took me an hour to wrap a gift for my daughter! My hands "ratcheted" terribly when I tried to open and close my hand and some fingers caught or locked up. Pain, swelling, exhaustion. Lots of fun. My symptoms, being not really symmetrical and being almost entirely tendon based, were somewhat atypical, but bloodwork pointed to RA. X-rays clear. I have a rheumatologist who I see every 3 months or so.
I had injections in two tendons and I've been on hydroxychloroquine and celebrex. These days I have some shortlived morning stiffness, occasional evening stiffness, once in a while some mild pains (no more than a 1 on scale of 1-10) lasting generally under an hour, and randomly some minor stiffness in my middle fingers during the day. I feel well overall (no fatigue etc) and I have almost no impact on activity now (Opening a bottle of water requires a grippy, I self-limit really heavy lifting and I haven't tried tennis again yet).
MTX is still on the table and I suspect they will want me to start in the fall (they also want me off the celebrex which I'm supposed to taper off this summer). MTX was proposed for this summer but they gave me a reprieve based on how I was doing.
I asked my doctor what the goal of treatment was. They said "normal". I didn't really ask questions about what that meant. Does it mean with MTX will I have zero symptoms (that's what normal would mean to me)? Or is the level I'm at now pretty "normal" for RA?
(Full disclosure - very not keen on MTX, have trouble including the common side effects in my definition of normal and the trade of a little morning stiffness and not carrying heavy boxes for a couple of days of brutal fatigue etc seems a questionable tradeoff given my current symtoms)
So......I'm wondering what normal means to you?
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CeeY
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Normal for me is doing what I want to do, when I want to do it….which of course is different for everybody!
On Mtx I was virtually as I was pre RA….sadly it only lasted about 7 years…...but I’m glad I took it…Only side effects were the odd headache.
I stopped the Mtx when it stopped working….tried a couple more DMards, then in 2016 I went on to Rituximab infusions which again gave me a normal life…until my infusion in January…which hasn’t worked…my rheumatologist is still investigating why,,,,I think it’s probably due to the Covid 19 vaccinations.
But I would definitely recommend giving Mtx a chance, because if it suits you it really does give you a good life.
It’s all very well saying the discomfort you experience is worth putting up with…but have you thought of asking your rheumatologist what damage could be going on without any treatment?
Yes, I know there's a long game to consider as well (you always have sage advice). My current symptoms are a few minutes of mild stiffness and the occasional pang of less-than-1 (out of 10) "pain" in one finger or my wrist. No actual joints involved at this point (tendons only per doc) and no other symptoms. If I had never felt the way I did before (ie what I feel now was the only symptoms I ever had) I likely wouldn't even go the doctor its so minor. But I definitely know we need to be aware of the future too esp as I have a RF of 143 and a CCP of 17 (other bloodwork all normal, just those two little buggers to haunt me!)
I'm just curious about other people's definition of normal or remission. From a lot of what I've read and heard of people's experiences it seems like what I'm currently experiencing is considerably less than many people who are in fairly successful treatment and consider themselves to be doing well. Of course I have no idea where they started either!
I took MTX for years until i had to have a load of blood tests done before i could go onto biologicals only it showed i had come into contact with tb and had to have three months of intensive antibiotics. Now i can't have that drug anymore. Now i am struggling. I am seeing the rheumy's tomorrow to see what they can do to help me. xxxxxx
I don't think there is a normal as RA affects each person differently. It is a strange comment to make. If your doctor meant normal as being as you were before RA started, that can't be so, if your doctor meant that you would be able to function 'normally' while being on dmards then that could be so. I have taken mxt for 20 years and while I have had many problems during those years I have been in remission for a few years now. Being in remission doesn't mean that I don't get painful flare ups, I certainly do but not all over my body as I used to. I believe the term 'remission' means that you have 3 or less joints affected at one time, I am sure someone on here will correct me if I'm wrong. I do know that my life is very good and I can do most things for myself, although I do need help with things like unscrewing jars or lifting anything heavy and the fatigue is more debilitating than the pain these days. In this country MXT is used as the gold standard medication for RA and as with all drugs it is not tolerated by everyone but it has been great for me. I hope you find what suits you soon and like me you end up in remission. All the best.
My current normal is no where near what my pre RA was. My current normal on treatment (biologics) is alot better than my normal when i was untreated 😁
I guess like you said it all depends how severe a person's arthritis is. Mine is classified as moderate so could he worse could be better !
I always think MTX is a really obtuse drug as it can provide great relief from RA but it can quite commonly take away day(s) of your week by feeling crap. I guess you really have to try it to see if you do get the after affects. I tried it, my body cannot tolerate it but in the 4 weeks I took it for it did start to work for my RA. RA was taking away literally all my days so I was willing to have 1 crap day if I had 6 with reduced RA pain. If your pain isn't so bad then I guess its a harder decision for you (gawd I'm really not helping you here).
I will say i think price plays a large part in prescribing MTX, if biologics were comparable in price to MTX im not so sure it would be prescribed as much.
I had similar problems to you with my hands (but with other joints involved too) in 2019 and a combination of mtx and sulfasalazine has put me in a position that I would call my new normal - only occasional pain and my fatigue is virtually gone most of the time. Like you, I wouldn't have gone to the doctor if this was the worst it had been, and I feel I can do pretty much anything I enjoy, but in moderation. (I think the "in moderation" bit is what I consider to define my NEW normal). I only noticed side effects from the mtx for about 2 weeks - not everyone has a problem with it. In your position, I think you have to consider what your condition will be like when you come off celebrex. The NSAIDs can very definitely help, but the medical professionals now seem to prefer that you don't take them long-term.
Before the mtx really kicked in, I was taking celecoxib as well. My Gp had been reluctant to prescibe it (and only did so because my rheumy insisted) and she suggested that I only use them every other week. I followed a slightly different pattern, but the point is that when I was taking the celecoxib my hands were pretty good but, when I stopped, it only took 2 or 3 days for my joints to kick off again. Whereas, now the mtx is really working, my last pack of celecoxib lasted 5 months (and I probably took more than I really needed). So, my feeling is that if you still need the celebrex, then it might be worth considering the mtx instead. All meds can cause problems (I can't take ibuprofen), so it is about judging which will have the greater benefits and which will cause the greater harm in the long-term. Something you need to discuss with your rheumy. Good luck, whichever way you go x
At diagnosis I too couldn’t do anything either, and MTX gave me my life back. And I would say I was 95% normal compared to pre-diagnosis. The 5% was that I needed to make sure I didn’t overdo things.
Roll forward 12 years and I am not quite as normal, but also 12 years older which may have something to do with it too!
What I was most worried about was/is not the pain in my hands and feet, but the effect of inflammation on my heart and lungs. Which you don’t feel or see until it has done damage. In years gone by, pre-drugs like MTX, people with RA had a shorter lifespan than those without it. These days there’s little difference.
(Your RF and anti-CCP may never change as they are antibodies, not inflammation markers)
For me, there is no ‘normal’, as in pre-RA, but even with the crushing fatigue, I am happy enough if I have no pain. I’ve been in situations during the past year when I could hardly get out of bed, get in and out the bath, only be able to get up the stairs on my hands and knees and not able to work.
But now I’d say I can do all those things, so I am in remission for the time being, but I just take one day at a time.
I take Mthx (I’ve been lucky enough to have no bad side effects, apart from fatigue, no feeling sick etc) and honestly it’s saved my life. I’ve recently had Sulphasalazine added in, which has made my fatigue much worse, but I don’t mind what meds I take, as long as I can get up and about and live my life as best as I can. 👍👍
Hi CeeY, your story sounds a but like mine and I have been confused about what DMARDS actually do.in a nutshell : stop th the disease getting any worse; NIP it in the bud. Doesn't always work initially as they take a long time to work. They're not painkillers. They're meant to reduce numbers of glare ups and lessen severity.
I'm the same as chockyuk, metho and sulfa, you just have to pace yourself and not attempt to do what you know you shouldn't be doing ( which I very often don't), but I am in a better position than I was when 1st diagnosed after my husband passed away.
I think a doctor saying normal if you have RA is wrong. You have it you will need drugs to keep it in check so remission possible but disease free and symptom free I doubt. As others said if you can do the things you want to do this is amazing.
3 years in and with a host of autoimmune and other stuff I would love to be normal again but accept that ain’t happening.
Not down just accept this is it and baritcitnib does most of the job BUT fibro and fatigue are knocking me for six every day so I get tired of being tired. I just think the word normal cannot be associated with this disease. I suppose 3 years in I have more than I was expecting to get from RA fibro Reynauds, Sojerns. Asthma, over active bladder and then this weekend tho small a basal cell carcinoma I am really anything else want to throw at me.Was not meant to sound down but do hate the way Doctors make it sound so casual!
Thanks to all who shared. Very interesting hearing the perspectives of real folks with more experience! Normal is obviously a very subjective term, but it sounds like for most of you "normal" means you can do many of the things you want to do (but not all) without too much suffering. For others it may mean still plenty of suffering but less than if you were not in treatment. It doesn't sound like pre-RA normal exists for any of you, even with successful treatment. I'm very fortunate to be in that first group (and better) at this point, which could change any time, and of course need to think of the long game too. This post wasn't meant to be about whether or not I should take MTX (also referred to as the gold standard here in Canada), as that is a multifaceted discussion with my doctors, although I think the fact that I am likely to feel worse general health wise (ie I will be introducing new symptoms by taking the medication) is a factor in assessing what "normal" means. Right now with no MTX my "new RA normal" is a few minutes of morning stiffness and some mild occasional soreness. With MTX my "new RA normal" may or may not get rid of that and add a day (or a few) of heavy fatigue, for example. That doesn't mean I can get away without taking it, but defining what "normal" means for me is important for getting my head around this thing. I really appreciate everyone sharing their "normal" with me!
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