Can RA burn itself out?

[NPBD]

My gp recently said my blood results were all normal, and considered my RA had 'burnt itself out'. He advised me to stop all my drugs (sulphasalazine, arcozia and lansoprazole) which I did, but all my symptoms returned. I saw a different gp who said to start them again, but did not say do it gradually, and I had several infections requiring antibiotics due to side effects. So I started them again slowly and have only now found relief. Has anyone ever heard of this 'diagnosis'?

[PFKAAde]

Hi NPBD

I have heard it said that in some cases it appears to ‘burn itself out’, but this begs several questions. Was the original diagnosis correct? Or was it actually a reactive arthritis rather than RA?

Further, the test of whether the disease is still active or not is to slowly reduce the meds and see what happens. I’m surprised you say this was done on the advice of a GP, do you see a Rheumatologist? Because they should be the ones managing RA meds, not a GP who is not a specialist in autoimmune conditions.

When you slowly reduce the meds you should be monitored for any reactions. If the symptoms reappear then the meds need reinstating. If they don’t then that’s fantastic, but I’d be surprised if that meant we were in the clear, rather that it is a prolonged period of remission. Maybe this will last, maybe not. Time will tell.

I have been in remission for several years, and have had little to no active inflammation for this time - but still have pain in joints that are damaged and still suffer from fatigue to a degree. And still needed a new knee in this time, so something was still going on.

I have been on Humira for most of the last 10 years, and my Rheumatologist has been happy to continue with this, partly as it was such a battle to achieve remission in the first place. He didn’t want to cause a relapse which we then spent another 10 years trying to control. However on my last appointment we decided that I would reduce the Humira from 2 weeks to 4 weeks for the next 12 months. If that is successful we will consider stopping it entirely.

I am hoping and praying that this doesn’t cause a reaction, but time will tell I guess.

For what it’s worth, I initially developed an inflammatory arthritis after a bad flu-like infection and was initially diagnosed with Reactive Arthritis. Was told it would not be chronic. About 5 years and 2 new hips later the diagnosis was changed to RA...

All the best.

[keeta]

Hi love .very strange. My GP. Keeps an eye on me but.won.t make any decisions to do with my R/A.

My Rhuematologist .is the only one who gives advice .changes drugs etc. Because she knows my condition.and has all my autoimmune history.

You need to speak to your r/a team.

Take care x

[AgedCrone]

If you have 't been referred to a rheumatology consultant I'd ask for a referral ASAP.

The average GP does not have the interest or knowledge to manage a patient with RA,& time is of the essence to get this wretched disease under control.

[NPBD in reply to AgedCrone]

The surgery thinks he is an RA specialist because he does joint injections, but my now retired RA consultant says he is no specialist. I was stupid to take his advice, but we tend to trust gps don't we? Should I repirt this?

[helixhelix in reply to NPBD]

A GP specialist normally just means a GP who has a bit of extra knowledge or interest in a particular area. They can be helpful in explaining things or in managing shared care with a rheumatologist. But they are not a replacement for a specialised consultant and shouldn't be directing treatment. I hope you are now under the care of a proper rheumatologist. You may want to discuss a medicine review with your rheumatologist as if you are taking an anti-inflammatory all the time there could be better options for you.

I wouldn't necessarily "report" it, especially if you are still at the same GP's surgery, as in make a formal complaint. But I would write to the practice manager to explain what happened and say that you didn't think this was good practice as it meant you had uneccesary trouble.

As for RA burning out, the NICE guidelines are that once a person has been in a prolonged period of remisssion to try tapering off drugs slowly. Some people can sustain remission without drugs. Others can't so it's something to do carefully!

[AgedCrone in reply to NPBD]

You should look for the letters FRCP after the name of a Consultant Rheumatologist = Fellow of the Royal College of Physicians....this means he has studied for many years in his speciality & is indeed a Specialist.

He will decide on your drugs, & will usually write to your GP who will issue prescriptions ......which will only be varied on the instruction of the Rheumatologist. If all is going well, at hospital Appoinments you will not always see him....but you will see one of his Registrars, or possibly a specially trained rheumatology nurse....who I find are worth their weight in gold.

I will only let my rheumatologist / specialist nurse administer steroid injections - I don't trust GP's to be up to date about site administration.

I would live & learn, making an official complaint could cause a bit of a "situation" if apart from not referring you to a rheumatologist you like him & the practice.

[Matilda_1922]

My GP says contact rheumatologist to seek advice.

Supposed to have shared care but GP doesn't know much about RA treatment and in the practice I'm with they constantly change.

My practice is run by a private company.

[2everett]

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[dbestdeb]

My blood work is normal more times than not. My rheumatologist says that the blood work can’t tell the whole story, but is one of many factors in RA treatment.

[Joy_1]

Hi

Yes I have heard of this. But in the case I know of the person had a virus which sent their immune system into over drive. After 1 year the RA had burnt itself out.

Joy

[helixhelix in reply to Joy_1]

Isn't that what reactive arthritis is?

[Amy_Lee]

I would think RA patients should only listen to rheumy instead. Too dangerous to listen to GP as they do not have enough knowledge to help us.

[medway-lady]

We have a GP who specialises in RA but only as far as a blood pressure check and blood tests as he signs the repeat prescriptions so is liable if something is missed in the interim between visits to the Hospital, he does really help and is lovely but does not do injections or change meds. I 'd suggest you ask for a referral to a specialist. Best of luck and hopefully you'll feel better soon.

[nomoreheels]

This is a tricky one because your RD could/may have burnt itself, it is rare, but there are two things, no three, that bother me.

RD can burn itself out, it's not unheard of, but there is also such a thing as med (or chemically) induced remission, meaning you're well controlled by your meds so your bloods will be normal. This is more likely than RD burning itself out. What it doesn't necessarily mean is that you're 'cured'. Obviously you flared when your meds were withdrawn so it was proven that wasn't the case.

Your GP may or may not, be a GPwSI (General Practitioner with Special Interest) you don't specifically say other than it's thought he is because he administers steroid injections. The GP who administers them in my Practice is a GPwSI but in Diabetes! So, GPwSI, he has or hasn't a Special Interest in Rheumatology, he's studied Rheumatology & taken further exams, if he has this shouldn't mean he replaces your Rheumy, including deciding whether or not you need your Specialist prescribed meds, he wasn't the initial prescriber of your DMARD. Maybe if he'd prescribed your NSAID & PPI he could make that decision. He would more informed as far as shared care is concerned but your Rheumy still remains as your secondary carer.

You've stopped your meds on his advice, you've suffered the consequences of doing so. Another GP advised that you started them again. What I don't understand is doing so gradually. The ones you mention don't need tapering, they can each be stopped abruptly so as far as I'm aware you should have restarted them as they were stopped. SSZ is often initially titred up until you find the appropriate dose but I wouldn't have thought you could just have started it again at the dose you were on. It could have been you would have had the infections anyway, it could also have been the case is because you were off your meds you were susceptible, but that's history, you'll never know.

So, I'm not so sure his actions are reportable, just advise your Rheumy what happened & he can decide what, if any, actions should be taken. I'd like to think he'd request your GP doesn't take such actions again, or that he contacts him for advice if there's anything he's unsure of. If you feel it would help if he was admonished you could advise the Practice Manager of what happened. I'd urge you to change GP's though, to the one who reinstated your meds or said to restart them.

[fluffness]

I stopped methotraxate after about a year. My rheumqtologist did keep me on sulfa though just in case. Knock on wood I'm doing grta!

[keeta]

As nomoreheels says. It takes so long to find the meds that keep you stable.it can take years. So going off something thats working .doesn.t make sense and can set you back .good luck x

[Hidden]

Hello, I am new so I hope you don’t mind me replying. I’ve never heard of it ra burning out, I know lupus can but I know you can go into remission and that’s when your bloods will be as good as yours were but I know it’s not advisable to stop all meds completely. Talk to RA team as in my experience most (not all) gps are not up always up to speed with auto immune disease unless it’s written on a protocol 😩

[NPBD in reply to Hidden]

Thanks, but we don't have an RA team, and the waiting list for my consultant is over a year. But I saw the GP again, he still says it has burnt itself out but nobody else I have spoken to agrees, so I'll just see another GP from now on.

[Hidden in reply to NPBD]

I would. Thats a dreadful waiting list for you to be seen by a consultant. Such a shame when your care is so important . I hope you are looks after well take care

[EdieB]

My Rheumatologist said “my work is done. Your numbers are all good”. He took me off my Methotrexate. I have been off them since June. I went to an orthopedic and was told both my knees are bone on bone and both need to be replaced. The right one first since it either locks or gives out. I still have pain in my toes ,my ankles, my one finger and my back. I do have compressed disks and a host of other problems with my back. I do have the heaviness in my shoulders and NEVER sleep well.

I go back to my Rheumatologist on September 19th I guess my first question to him would be are you saying I’m cured? I didn’t think RA is curable. Or did I not have RA in the first place. I’m so confused by this whole situation.

Any thoughts?