This more of an update than a question.I had an appointment with a rheumatology consultant on Friday after having to stop taking Leflunomide due to stomach problems and weight loss.
I was expecting to be switched to a biologic after trying three different DMARDS. But much to my surprise the consultant has decided I should cease taking all RA drugs.
Apparently I'm in remission and given the problems I've experienced with side effects the consultant decided I should have a break.
He decided that if (when) the RA symptoms return I will try Hydroxychloroquine.
It wasn't the outcome I was expecting, but I'm happy to go along with it.
Cheers
Seb
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Sebastian247
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It's always nice to hear someone doing well but I'm interested to understand why you were so surprised? Are you still having symptoms and pain? Hopefully not and long may it continue.
In the past I have twice paused taking medication for RA. The first lasted two months with no return of RA symptoms, the second lasted three months, after which time symptoms did return and I started taking medication again.
Hence whilst I seem able to go for lengthy periods without medication, ultimately the RA has returned, and given the time it takes for the meds to start working, (assuming the RA returns) I will have a period of discomfort whilst waiting for the medication to kick in, assuming hydroxychloroquine works for me.
With that previous experience I assumed I would be prescribed medication. I had also assumed I'd be switched to biologics having tried three DMARDS over the last four years.
But I am happy to have a period off medication, considering how bad the side effects of some drugs have been for me.
That makes sense, thanks for the info, I hadn't realised. MTX and Lef have worked for me in controlling the disease (sulpha didn't) it's just been side effects that have caused the issue. I was quite happy on Lef (compared to MTX) so am a bit frustrated I had to come off it. Cheers.
Thanks. I suspect the remission won't be that long lived, but I'm happy to have a break from drugs, and who knows, I might be lucky. Wishing you all the best too.
I’m sorry but don’t understand. If it was drug induced remission then surely once the medication is stopped symptoms will return. I believe there has to be a gap between LEF and any other medication so is he saying it is working so now it’s stopped the problems will return and you’ll need more medication? I wonder if this is a measure to reduce costs as well ? Are you sero positive or negative ? I think you must keep a record of your symptoms for when you see the consultant again and be ready to ask for more medication. Best of luck but this isn’t the first time someone has said medications stopped and I wonder if it’s a trend to drive down costs by limiting choice.
Your rheumy sounds like mine. I stopped methotrexate because of side effects, and she refused to let me try something else. I had to wait a year to see her again and this time after a brief look at my hands she said my PsA is quiescent.
So why am I sitting here with pain in my feet, hands, and hips?
I have given up. All that stuff about make sure you get your arthritis treated straight away so that it doesn't get bad, it is like some rheumatologists haven't read the NICE guidelines.
I do wonder if this is a money saving exercise. Normally after trying three DMARDS they offer a more expensive medication. Maybe they feel that if they tell us that the disease isn't bad enough they can get away with not prescribing anything else. 🤷♀️
I'm sorry to hear you're in pain. Surely if you have RA symptoms you have active disease and should be on medication for it? Can you contact the consultant's secretary and request medication?
Whilst I was surprised by the outcome of my appointment, I'm not unhappy, but that's because I seem able to go for extended periods off meds without RA returning, and compared to most people my RA symptoms are mild (apart from when it first started in 2021).
But my previous experience is that the RA will return eventually.
Continuing on DMARDS is another matter. I've got the impression (maybe incorrectly) that most people in my situation would have been switched to biologics by now, but it seems I am to try every DMARD (maybe because I have only experiened minor symptoms over the last year). Maybe it is a cost issue.....
But I am not looking forward to trying hyroxychloroquine. In the 1980's I spent a year in parts of Asia where malaria was prevalent and I took aniti-malarials for months. I had to stop taking them in the end because they made me feel ill. I hope I don't experience the same with hydroxy.
You've articulated why I was surprised not to be prescribed new medication.
I am currently totally symptom free and stopped taking Lef a month ago. Recent blood tests show CRP less than 1. I have been taking a wash out drug for the last 11 days to rapidly get the Lef out of my system.
But I'm expecting it to return (it has in the past after a three month pause in medication). So the plan is if / when it returns I contact the consultant's secretary and will be prescribed hydroxychloroquine. I'm sero-negative and seem fortunate not to get flares and can go for extended periods off medication.
The only other thing I can summise is the consultant was giving me a break from meds because of the side effects I've experienced on both MTX and Lef, which have been quite bad.
But I am aware if / when the RA returns there will be a period before the meds kick in.
I'm sero positive so I think it may be easier to treat and they've got proof its RA so they have to treat it or it'll come back. I've been told since the start many years ago the reason I have had no joint damage although other RA related issues is that it was treated aggressively from the beginning. It seems that things are changing here Bio's are limited to 3 but I've no idea what happens after that if over 60 and can't access JAKs. I've been lucky only ever had 2 and one of them had to be stopped because of drug induced Eczema which was spreading and sore. So I was allowed to go back to Etanercept which works better anyway. I really think this is so puzzling and I hope NRAS can find out more asap because if it is a trend then it begs the question what next?
Good comments. I hadn't realised there was a 3 bio limit and over 60s restriction for JAKS. As you say, what next..... I was prepared to go back on Lef, on a lower dose to see if that stopped the stomach issues, because I am aware I am running out of options (and Lef was working in terms of controlling the RA). But the consultant felt certain it was the Lef causing the problem so wouldn't let me take it. Now you've highlighted this, it is a bit concerning.
There may not be a limit where you are but it was definitely said it applied for my local hospital at an NRAS meeting last year by one of the visiting medical professionals. It might be an empty threat to stop people jumping from one to another as can happen. I don’t know how they tell though.
I don't understand how they make theses decisions. I asked my Rheumatologist what remission meant and he said they often debated it at conferences! I've been in "remission" for a year or two but they always refuse to even lower the dose of 20mg methotrexate, let alone stop it. I'm strongly positive RA, six years. I thought people with RA had to be on meds for life. Catch it early, treat aggressively, that sort of thing. I'm envious that you've been told you can come off your meds, and obviously your reactions and illness profile are unique to you, so it's a different treatment plan. Maybe you'll never hear from RA again!! Hope so. Good luck.
Thanks Ginny - that would be wonderful but I suspect RA will be knocking on my door in a month or so, based on previous experience. I agree I don't understand how this decision makes sense, apart from deciding to give me a break from meds due to side effects - perhaps that's the logic. But he examined me from head to toe, and checked my recent blood tests and was happy to say I was disease free. If my experience of RA symptoms were more severe I'd be seriously questioning the wisdom of this. Best wishes - Seb.
Bit like myself Sebastian, maybe good news maybe not ,I have had this twice in the past 10 years
First time contacted secretary as meds stopped and gp dissapointed, letter from rumatologist, unfortunate some individual are left in pain etc and appropriate pain relief needed and if bloods are showing up a quick referal needed,second time same ,back on meds now ,my rumatologist is old school and only seems to go by bloods now regardless it seems ,he does gave his good points as well and good in other departments, hope your remission lasts
Thanks for the reply. I do worry about solely relying on blood test results. I don't routinely have particularly high levels of CRP, even when I've been in significant pain. I don't know what CRP levels other people experience and how that relates to their actual experience of pain, swelling etc. Hence I think it's important clinicians consider all factors, not just bloods.
Congratulations. We all love the words 'in remission'. Biologicals like all RA meds have side effects and we need monitoring when on them. You would need a DAS score of at least 5.1 for biologicals to be approved. If it does flair again go back, but in the meantime be pleased.
Thanks, yes I am pleased to be both free of pain and not taking drugs that make me feel ill. I'm aware that I am one of the lucky ones so far as having RA is concerned. Cheers.
this a mysterious disease! I have had short flares whist taking methotrexate and Benepali but have been off these for four weeks whilst on antibiotics for a throat infection. I keep wondering if I shall have a flare as not taking meds for RA but so far so good. It seems perverse to have flares whilst on the drugs but no flares when off them. I hope you feel a lot better now and yourRA is truly in remission.Time will tell. Best wishes
Although I do think there must be a major medication cost-cutting drive at present by switching us to cheaper drugs (e.g biosimilars from our main branded biologic) or seeing if we can cope without any medication suggesting “remission” has been achieved. The problem is getting the RA back under control again quickly if symptoms flare again and having to suffer in the meantime, with the risk of more joint and organ damage in the interim .
That is the downside isn't it. Reading about hydroxychloroqine, it takes weeks to work, so yes if symptoms start to return (and my previous experience is that in time they will) it's going to be a bit uncomfortable for a while.
I've been in remission previously (just not told so by a rheumatologist) and voluntarily decided to stop meds (because of the side effects at the time) so I've had experience of this situation - just that in the past I've stopped meds without rheumatology telling me to.
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