rheumatoid arthritis remission

[GrannieD]

Hi I’ve had RA for 37 years and been on medication all this time. Last July I was on Tocilizumab and responded well until I started to suffer vertigo symptoms and nausea, rheumatologist stopped meds to see if symptoms cleared, I have had MRI scan and waiting results. Now I’m not taking any medication, (4weeks now). I’ve spoken to rheumatologist today as I’m concerned about flares, he has said maybe I’m in remission, and contact them if and when I need to, he also said “why take medication and suffer side effects if I don’t need them’ . Well I understand that but I’m very concerned. Question is has anyone ever gone into remission after all this time and not needed any help.

[helenlw7]

I’ve never been in remission since my 20+ years since diagnosis, and I’ve only been off meds twice in the last 2 years when in hospital. My concerns would be, what if you’re not in remission, it can take 3+ months for meds to start working again.

[GrannieD in reply to helenlw7]

Hi, that’s exactly what I said to him, I don’t want to risk having a flare for something to take months to get under control, also he said not to stress over something that may never happen.

[helenlw7 in reply to GrannieD]

That would make me stress even more!

[Neonkittie17 in reply to helenlw7]

Also my concern it’s the meds still working and lingering, but for how long before they clear, and symptoms and pain occur again.

[medway-lady]

I don’t understand what the connection is with RA meds and vertigo. And if they stop meds for 3 months between changes of medications how can it be said that 4 weeks without symptoms is remission. I think you might need to ask more questions?

[Neonkittie17 in reply to medway-lady]

I’m also baffled why a rheumy would call such a short period of time a remission.

[MuppetBaby]

I think our rheumatologists are being asked to recheck diagnoses as it happening to a lot of people.

I have just changed consultants (my request) and the first thing he said was I don’t think you have Rheumatoid Arthritis and when I asked what he thought it may be he mentioned Fibromyalgia and Chronic Pain syndrome 🙄.

I have scans that show inflammation with conclusions stating consistent with active inflammatory arthritis but he stated “those weren’t the best scans”. I was on a biologic at the time and telling my previous consultant that it wasn’t working so she requested the scan after a discussion with the other rheumatology consultants (according to her).

He seems nice enough (compared to my previous consultant), and sometimes it’s good to have a fresh pair of eyes so I’m gonna see where it leads. He has not asked me to stop medication but I only met him in February because I was having a flare and was on an extended course of steroids. I anticipate this may come up at my next appointment in May if he’s still “not convinced”.

I had an appointment with the Biologics nurse today and when I mentioned what he said she was quite surprised 🤷🏻‍♀️

[Mistydawn]

Hi, these biológics can remain remain in your system for up to 18 months so very surprised (shocked that they y suggested you were in remission after four weeks! It’s probably the meds in your system still working hence no symptoms…

Also, side effects of some of these biológics is headaches and migraines. I was on Orencia and my vertigenous migraines escalated. I spoke with my rheumatologist and agreed that as I was of slight build, maybe the dose of Orencia once a week was too much for my small frame. We agreed I would take the med once a fortnight instead of weekly which worked well for me.

Good luck

[oldtimer2]

I was taken off methotrexate and told that I was 'burnt out'. I continued to have flares which, at that time, were treated with steroids. The rheumatologist said that they were 'just blips because of coming off medication'. She was wrong - I then developed Polymyalgia Rheumatica, followed by such absolutely classic joint swelling that the GP took one look and said 'You've got RA!' and phoned the rheumatologist there and then.

I would be very suspicious of this airy 'You're in remission' after such a short period. I'd agree that it seems a possibility but unlikely and in your place I'd be quick to contact the team again if any symtpoms or signs recur.

[bienassis]

Burnt out!! Oh dear! I’ve been declared ”burnt out” several times over the years; never having been able to get any doctor or nurse to define that phrase. When I’ve asked what it means I‘ve never been given a satisfactory answer - just a shrug and a smile and “see how you go”! My methotrexate has been reduced but I have never stopped taking it.

Always be cautious when you hear these vague phrases when applied to systemic conditions like rheumatoid disease. You may indeed be lucky enough never to have another flare, but don’t bet on it. This is a life-time condition.

I hope that doesn’t sound pessimistic - it’s just a realistic view after 58 years with the disease,

Take care!

Bienassis x

[GrannieD in reply to bienassis]

Hi I’ve been on medication for 37 years and never been without something. My lovely Rheumatologist retired last year and I now have a new guy. I’m on holiday in a few weeks and he tells me not to stress about something that might not happen.

[medway-lady in reply to GrannieD]

That’s like walking along the railway line hoping not to get hit by a train. Bizarre!