How do you deal with flare ups/ the up down nature of this disease?

I have had RA for ~45 years (from age 5!) In general the number of flareups has decreased as I have got older. Prior to my current flare up I have been well for several years (not entirely symptom free but manageable with the odd ibuprofin.

My policy has always been to take the minimum number of pills I can get away with. Acute flareups being managed with prednisone (20mg for a few days then reducing dose)

There are quite a few new treatments available now but I have deliberately not pushed to be on them because I am concerned about side effects, and as many are taken long term - I don't want to be on something I don't need/might not be doing anything useful.

How do you tell if you are in drug induced remission as opposed to normal/natural remission. Do any of these treatments help reverse damage - i.e. in the non flared up times? Am I missing out on anything, or given the relative infrequency of my fare ups am I better off pottering on as I am? I haven't visited my Consultant for 10 years.

10 Replies

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  • Hi Pip

    My Dad and Uncles are in the same situation as you, they were diagnosed with RA over 50 years ago but well before the current treatments became available. I think they were used to just using painkillers and "putting up with the pain", and they were not even offered steroids. They definitely wont be pushed onto newer treatments although one uncle now in his 70's is on Methotrexate and feels the benefit after all those years.

    I am wondering though for my own interest how much joint damage have you suffered, they have a lot and although i have severe Ra i have little joint damage (although just had a spine op).) I am glad I was born in the times the drugs are around although i do worry about the side effects too.

    I dont know about remissions and will be as interested as you about how they happen and when , so far i have been unlucky enough not to have experienced one!! But i am hoping when i get back on my humira next year may be good for me!

    I do feel though that like my uncle it may be a good idea to see the Rheumatologist as his pain is much less now he is on treatment and he is coping much better now the pain is less and the inflammation is less. I'm sure your Rhuemy will only put you on drugs if they feel they will help you, but if you get assessed you can have more knowledge of what, if any damage has been done. Maybe they will be able to offer you some other treatments like physiotherapy, hydrotherapy, acupuncture, occupational therapy, which all helped me.

    And hope you have a very merry xmas

    Axxxx

  • Re the joint damage - there is some - I have lost quite a bit of movement in neck, ankles/feet, elbows, wrists and hands. None of it stops me doing things though - I cant go ten pin bowling and some DIY tasks in awkward places are impossible.

    Most of the lost movement occurred early on but my ankles are worse than they were a few years back I would say. Also I was put on Salazopyrin once (~25 years back) and it made me very ill. Really concerned about how I wold know if the drugs or natural remission caused any improvement even if there weren't any severe side effects.

    Allanah - Really sorry you have had things so bad - Hope that remission (natural or drug induced) comes soon!

    Have a great Christmas and New Year

    Pipxxx

  • It's a hard one, and I think you have to go on your own knowledge of your own body and how the RA affects you. I'm also in my 50's but only diagnosed a few years back, and have been on triple therapy since as well as adopting a super healthy lifestyle. And have had v few side effects from the drugs thankfully. So generally I am major flare free, and rarely even need painkillers, although have bad days here and there. However, I can sense the RA is still there just waiting for me to stop taking the pills! It's hard to describe, but my joints don't feel the way they did before RA showed its face and year on year I've lost a bit more flexibility and have gained more wonkiness in in fingers and toes, and am a bit stiffer in the mornings despite being fitter overall than Iwas pre-RA. So I know that it's the drugs that are controlling the disease.

    It does seem from other people's stories that there is a form of palindromic RA that can decrease, but not that common, and the books do say that a big chunk of people get a "mild" form of RA so it may well be that you do have a well behaved version that is manageable with limited drug treatment. But damage can't be repaired, so I would worry about what the future holds as it does get harder anyway as we age and I want to stay as mobile as I can as long as I can. Like Allanah I think it sounds like a good plan to go and see a rheumy again, and discuss it. You don't have to take his/her advice but better to have had it perhaps? Let's hope current flare goes quickly, Polly

  • It's a hard one, and I think you have to go on your own knowledge of your own body and how the RA affects you. I'm also in my 50's but only diagnosed a few years back, and have been on triple therapy since as well as adopting a super healthy lifestyle. And have had v few side effects from the drugs thankfully. So generally I am major flare free, and rarely even need painkillers, although have bad days here and there. However, I can sense the RA is still there just waiting for me to stop taking the pills! It's hard to describe, but my joints don't feel the way they did before RA showed its face and year on year I've lost a bit more flexibility and have gained more wonkiness in in fingers and toes, and am a bit stiffer in the mornings despite being fitter overall than Iwas pre-RA. So I know that it's the drugs that are controlling the disease.

    It does seem from other people's stories that there is a form of palindromic RA that can decrease, but not that common, and the books do say that a big chunk of people get a "mild" form of RA so it may well be that you do have a well behaved version that is manageable with limited drug treatment. But damage can't be repaired, so I would worry about what the future holds as it does get harder anyway as we age and I want to stay as mobile as I can as long as I can. Like Allanah I think it sounds like a good plan to go and see a rheumy again, and discuss it. You don't have to take his/her advice but better to have had it perhaps? Let's hope current flare goes quickly, Polly

  • It's a hard one, and I think you have to go on your own knowledge of your own body and how the RA affects you. I'm also in my 50's but only diagnosed a few years back, and have been on triple therapy since as well as adopting a super healthy lifestyle. And have had v few side effects from the drugs thankfully. So generally I am major flare free, and rarely even need painkillers, although have bad days here and there. However, I can sense the RA is still there just waiting for me to stop taking the pills! It's hard to describe, but my joints don't feel the way they did before RA showed its face and year on year I've lost a bit more flexibility and have gained more wonkiness in in fingers and toes, and am a bit stiffer in the mornings despite being fitter overall than Iwas pre-RA. So I know that it's the drugs that are controlling the disease.

    It does seem from other people's stories that there is a form of palindromic RA that can decrease, but not that common, and the books do say that a big chunk of people get a "mild" form of RA so it may well be that you do have a well behaved version that is manageable with limited drug treatment. But damage can't be repaired, so I would worry about what the future holds as it does get harder anyway as we age and I want to stay as mobile as I can as long as I can. Like Allanah I think it sounds like a good plan to go and see a rheumy again, and discuss it. You don't have to take his/her advice but better to have had it perhaps? Let's hope current flare goes quickly, Polly

  • It is a very hard question to answer as Polly says. I have a constant inner battle which I voice sometimes on here about exactly this point.

    You and I are the same age it seems - well I turn 50 in two weeks time at least. And like Polly I tell myself that I value my mobility pretty highly - enough to put up with the downsides of these drugs so far. But I am in remission I believe (don't see a rheumy enough to know for sure) and haven't flared properly (with intense pain) since June.

    Rationally I put this down to taking 15mg of Methotrexate by injection along with a low dose of Hydroxichloraquine. But also I keep myself very fit and healthy. The small amount of collateral damage you have sustained as you describe it, would be enough to convince me that it's worth taking the drugs for. I have almost no side effects from them now and no longer being able to drink alcohol isn't such a big loss so the only worry I have is whether I actually need to take them still or not. If I'm still in no pain and feeling well in 6 months time I might ask my rheumy (if I ever get to see him again!) whether I could try dropping doses slowly and see how I go because I don't like just taking these drugs without really feeling convinced I need to. But I suspect symptoms would come back and I'm more scared of not being able to have a good range of motion with my joints than I am of the long term effects of the drugs I think.

    I tried Sulphasalazine/Salazopyrin when all this started and it made me very ill too. But each of the DMARDS has different effects on different people and by and large I've been fine on Methotrexate and Hydroxichloraquine.

    So I agree the best thing would be to get back on a consultant's list and see what he or she has to say. Others here have discovered that what they thought was RA has now disappeared or been misdiagnosed so perhaps you might find yourself in that category - after all there are over 200 types of arthritis? Maybe they will say that your RA has been very mild (it does come in degrees - I use Allanah as my marker on this because she has a very aggressive form it seems) - and would be controllable with one of the less aggressive medications with minimal side effects. You won't know unless you ask a specialist.

    Prednisolone and NSAIDs can do just as much harm to the body as many of the DMARDs so it's well worth seeing a rheumy again and doing your research now while you are reasonably young (and 50 is young of course!). I could ten pin bowl if I wanted to and regularly dance the night away now - and there's little by way of DIY I can't do. I've only taken steroids twice for RA and both times it has had a big affect on my state of mind so I am far more scared of these drugs than of DMARDs.

    So if you're asking is drug induced remission really achievable I would say that yes it is (unless it's just upped and left me but as I still can't fully clench my fingers and suffer from residual stiffness then I suspect it hasn't!). No one will force you to take drugs, it's entirely your choice, but it's great that you've come here to do your research - keep questioning. I do love these kind of blogs - thanks! Happy Christmas - Tilda x

  • PS sorry hope that didn't sound insensitive re I love these kind of blogs - I just meant the questioning not the fact that you are currently flaring and in pain. I really hope you wake up tomorrow and find the flare has gone away of course and that you have a lovely Christmas.

    Tilda x

  • Thanks for all your comments! - will reply more fully later - must get those potatoes peeled!!

    Have a great & pain free Christmas!

    Pip xx

  • You could read this for confirmation about the most commonly prescribed RA drug of all - Methotrexate.

    rawarrior.com/methotrexate-...

  • Sorry this was the link I meant to give you - the first part in the saga!

    rawarrior.com/methotrexate-...

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