RA burn out .

[Grounsel]

Does RA ever burn itself out ? I have been told it can , I have had it now for 46 years .

[sylvi]

To be honest i don't know, but i have heard that it does, but i don't know if it does or not. Do you think yours has burnt out. xxxx

[Grounsel in reply to sylvi]

I had ingrown toenail and have not had my medication for 4 weeks and not feeling too bad , I am going to start it at weekend . But I thought I would have been a lot worse . Friend says it has maybe burnt out !

[jackNruby2 in reply to Grounsel]

I had to come off some medication because I was unwell, when I mentioned coming off methotrexate because of how well I felt, the nurse told me that it takes more that a month for some meds to leave the body and due to that it was still working.

I would be very interested to learn more about burn out

[Neonkittie17 in reply to jackNruby2]

It can take much longer for some meds to wear off (Rituximab and it’s powerful effects stay in your system as such affecting the ability to produce B cells/antibodies from your system for many months, and in my case for over 2 years) and the RA disease activity to return. Sadly for the most part of patients RA will creep back. Your nurse is of course right, and if it took 8 weeks on average for Mtx to start working then that’s the time you would expect to feel/see RA symptoms returning if you stopped it. Good luck.

[AgedCrone]

I think it’s wait & see! I am supposedly in Remission, ,but still on Rtx infusions. I still get pain..but not all the time

[zen4]

Don't think so I heard that years ago but I've had jt for over 50 years!! I'm on baracitinib now which has really slowed it down but unfortunately most of my joints and back are already damaged Didnt have it until I was 66 and now they don't give it to people over 65 so hoping I can stay on it!

[Sebastian247]

The phrase has been used in conversations I've had with a few people in the medical profession (a physio and possibly a GP from memory) but notably never by a consultant rheumatologist to me.

I'm currently in remission (however you define it). I'm not taking any medication for RA, and came off RA meds in early December, CRP is below 1 (blood test last week). I get a few twinges, but as yet nothing to obviously indicate the RA is returning. So I'm in a waiting game to see if it comes back. I've previously gone for three months without RA meds.

I did read research that some people (a small number) can go for years before RA symptoms return. I also read about post viral arthritis, which is temporary and burns itself out, but that's not RA. Hope this is of intertest. Seb.

[pammi2]

never heard of that one

[Greengodes]

Hello, I was diagnosed with RA 3 years ago following a positive blood test and because of symptoms however, they believe I’d probably had it for some 10 years when I’d been diagnosed with PMR and blood tests had not come back positive. I was on Hydroxaclorine and MTX. Late last year on 3 occasions my blood test revealed some abnormal readings and I was taken off all medication and was put on the urgent rheumatologist list. Some urgent list (!) as I wasn’t seen for 3 months. Anyway throughout this 3 months I displayed no pain or stiffness in my hands or wrists. By the time I saw my rheumatologist I also had no positive RA readings in my blood. The rheumatologist told me I’m in remission but it could come back tomorrow, next week, next month, next year no one knows. He said that because patients are always on long term medication no one knows if they’re in remission . Hope that helps.

[Grounsel in reply to Greengodes]

Thanks . I might try coming off methotrexate and seeing how it goes . I'm also on infliximab over 20 years . If I stopped it and it flared up again would I get back on a biologic. Or just be left without .

[Greengodes in reply to Grounsel]

Please discuss this with your rheumatologist before you take any action. All I know is I will be seen again in 6 months time for reassessment but if in the meantime I start suffering from pain and discomfort to see my GP who will refer me to the rheumatologist for an urgent appointment. Good luck.

[oldtimer2]

Beware! I think that it can become quiet and less active - perhaps needing less treatment, but easily triggered off again.

In the 1990s, I was told by a new rheumatologist that my long-standing Rheumatoid Arthritis was 'burnt out' and taken off medication (hydroxychloroquine). However, I continued to have flare-ups requiring short courses of steroids. This was put down to 'coming off the medication'. I moved area again and two years later had an absolutely textbook classic flare, prompting the GP to exclaim that I had RA. This resulted in a 'new' diagnosis of 'Rheumatoid Arthritis' by a different Rheumatologist! I'm now, thankfully, on etanercept injections.

[Knip]

I think it is just periods of remission. I made the mistake, once,of stopping my drugs because I felt well, but it caught up with me with a vengeance, so I'm never tempted to do that now. I do get ups and downs, and I'm grateful for the ups.

[bienassis]

This is an interesting question! Some months ago my rheumatoid consultant told me I had “burnt out”. I’ve had the disease since 1967, and for most of that time I’ve been taking methotrexate. I have been lucky to have long periods of remission.

More recently, I have started to have more pain making me hardly mobile! Well, I think this is probably a result of damage done over the years in spite of “remissions”’. I don’t think the expression “burnt out” is at all helpful after many years of the disease. And, in fact, not helpful at any stage. This is a chronic disease. It’s life-long. And although it may blow hot and cold over many years it can return with a vengeance.

So, beware of these weasel words - especially as you get older, as old age itself brings other infirmities.

[RootsToots]

It can, my late father had it from his early 40s until around age 82. It deformed badly him first though and the methotrexate did his kidneys. He lived around 4 years without it. It's the reason I started to support NRAS. Now I have arthritis as well... full circle!!

[PCStrawberry]

Remission is not only possible, it's common. However, I'd opine remission to be very fortunate and not a majority of RA patients. My wife was in modest remission for years, only to be launched into far orbit by COVID-19, in the summer of 2022. We're still chasing solutions at this point, with yet another new biological starting next week.

[ElizabethW]

I have had RA for 45 years. During those years there have been times when it has been more and less active but often severe, and i have plenty of joint damage, and had a knee replacement in 2002.

In 2008 I was in remission, and went off methotrexate because I hated taking it. I felt well and when my prescription for hydroxychloroquine ran out 6 months later, I quit that too. I had at least 2 years of wonderful remission before it started creeping back, but when it did, it came back really hard, By then I was no longer in touch with my rheumatologist, and had to wait 5 months for an appointment . Needless to say this was a very tough and scary time. Once I saw the rheumatologist and started back on the methotrexate, and also had a couple of cortizone shots, I started to feel much better within 3 months.

So in my experience it may feel like the RA has "burnt out" but it can come back worse than ever. This disease can be an unpredictable beast, as I am sure you are aware, and sometimes the meds are horrible too. I hope you continue to enjoy your remission, but just know that without meds, your RA may very well eventually raise its ugly head again.

I wish you continuing good health.

[BoneyC]

I was dx as a child in 1971 and doctors used to say to my parents it could burn itself out, but 54 years on, it hasn't!

[YuzuShiso]

I’ve had periods of varying degrees of remission over the 60 plus years since diagnosis as a young child, but each time it returns it is much more severe than previous episodes. And it all depends on one’s definition of remission - I have personally defined it for myself as periods when episodes are not long enough that I feel I need urgent medical attention. I was in denial to a certain extent until it came back in December 2019 and couldn’t be ignored.

[Seabird1]

Hello, that would be good if it did just burn out. I understood the meds are controlling it, not curing it. That's why they are called disease modifying drugs. Remission can happen but I'm not game to leave my joints exposed to more damage. There are also severities of the disease. I have heard of people having only 1 joint affected. However I'm pleased to be feeling better and just keep on what I have been prescribed to take.