Post covid flare- do my meds need changing? - NRAS

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Post covid flare- do my meds need changing?

Haylonico profile image

Hello

I've posted a bit about steroids not doing the job they always did for me previously- ie sorting me out! I'm 7 weeks into my flare up now and still pretty rubbish amd depressed.

Thought I'd try and gain some positive stories from you all regarding post Covid flare ups (since im pretty sure thats what kick started it all, following 7 blissful years on Sulfasalazine and me appearing just like your average Joe- walking up and down hills, carrying shopping/small children etc)!

Im Still on Sulfasalazine and Naproxen has been added by my GP. Two steroid injections and that is all Rheumatology will give me 😫

How long did your post covid flares last and could you remain on your current meds, or did you have to change/add anything?

Many thanks 😊 🙏

21 Replies

Cam’t really comment on post Covid as have not had Covid.

However I had a nasty viral gastroenteritis in February which has caused me to flare, and my rheumy thinks has caused my drugs to stop working. But I am on biologics so it makes sense that this can happen as they are essentially antibodies and one’s body can develop resistance to this.

Sulphasalazine is different, so unlikely to have become resistant to it. But does seem possible to me that the virus has kicked your RA into a different - higher - gear. So need to increase/change drugs.

Had steroid injections to see if that would bring me back to normal, and still things grumbling, so got appointment next week to discuss changes. Which is now 12 weeks post infection…

Talk to your rheumy team! Do ‘t put up with this too long.

Haylonico profile image
Haylonico in reply to helixhelix

Im trying to....they srnt offering me anything other than the steroid injections I have had...

I’ve had covid but didn’t get a post covid flare so sorry I know that’s not very helpful. My only advice is to contact your rheumatology team for advice.

Haylonico profile image
Haylonico in reply to bpeal1

There arnt giving me anything other than steroid injections...x

bpeal1 profile image
bpeal1 in reply to Haylonico

I think you might have to be a bit more direct and ask if it is worth adding another DMARD (disease modifying anti rheumatic drug). I have found in the past we sometimes need to be more direct with medical professionals and ask things like “Is it worth trying …?” Sometimes the answer is no (usually with an explanation why not), sometimes it’s “yes it’s definitely worth a go” and sometimes it “I’m not sure it will do much but it won’t hurt to try”.

Haylonico profile image
Haylonico in reply to bpeal1

I have asked outright. I have actually been in tears down the phone....I just wanted some positive stories and ideas to suggest back to them. Thank you x

I’d ask for a drug review…& ask to get DMards prescribed that means you don’t need steroids.That is possible…When first diagnosed…so No Covid involved….I had really nasty reactions to Prednisolone so it was stopped…..& I now never have any sort of steroid.

What suited me might not suit you….but it proves getting prescribed the right Dmard selection shows it can work….but you need to push for it.

Haylonico profile image
Haylonico in reply to AgedCrone

I am already on Sulfasalazine...x

AgedCrone profile image
AgedCrone in reply to Haylonico

Many need more than one Dmard to control their disease…it’s much better that …..than relying on Pred….which only disguises inflammation…it doesn’t stop or repair damage,Try for a drug review with your rheumatologist…not your GP.

Sorry about the underlining I can’t get rid of it!

Lolabridge profile image
Lolabridge in reply to AgedCrone

However some of us do need Prednisolone and/or steroid injections because we can’t tolerate any DMARDS. Right now I would be in real trouble without Prednisolone!

AgedCrone profile image
AgedCrone in reply to Lolabridge

Of course if you are unlucky enough to be in that position…you need something….but I’m sure most people would much prefer something that is going to protect joints & organs….rather than just mask the pain with Pred…with all its downsides…& to find that something sooner rather than later?

Lolabridge profile image
Lolabridge in reply to AgedCrone

Yes and that’s why I’m on biologics, as you are!But I’m between biologics at the moment so having to rely on Prednisolone in the intervening period. I agree with Mmrr that steroids can help many of us through difficult times. It’s unfortunate if they create problems for some, such as yourself.

AgedCrone profile image
AgedCrone in reply to Lolabridge

But I don’t have the choice….steroids affect my central nervous system…..& it would be dangerous for me to take them.Thankfully my infusions have worked until the last one in January…so I’m having all sorts of different blood tests to see if it’s just a one off failure…or if the Covid19 vaccinations have had any affect on the Rituximab treatment.

I will really beat myself up for continuing with the vaccinations if that is the case….the thought 6 years of relief down the drain is not what I want to hear.

I'm sorry to hear you feel rubbish. I nearly always get a nasty flare up after a virus of some sort. I had a bug recently that knocked me side ways for a good few weeks. I seem to have recovered now. I'm on Imraldi, so not sure if that makes a difference regarding recovery time. You've been poorly for a while, do maybe give rheumatology a nudge?

There arnt giving me anything- waiting for xrays to be taken apparently...thanks for your reply 👍 🙂

HI there. I had Covid in January and had a flare that lasted about 6 weeks, Finally put under control with oral steroids for a week and increasing my MTX dose back up to 25mg (previously 20mg). i'd previously had steroid injections with very little effect after previous flares so maybe oral medication works better in some people?

hope you feel better soon, the better weather definitely helps!!

Hi. Sorry to hear you’ve not been good after covid. I have had a similar experience with a prolonged flare, fatigue and lightheadedness which has lasted getting on for eight weeks. The fatigue is reducing if I don’t do much but my joints have all hurt far more than normal since. I’m on prednisolone 7.5 mgs daily and Baricitinib 4mgs - these have served me well up to having covid so pretty certain it’s got to be as a result of a post viral phase. Have told my rheumatologists and they’re trying to work out whether this is coincidental or not. Will be very pleased if somebody comes up with a solution! Nothing particularly positive in my answer I’m afraid but it does sometimes help to know others are going through the same thing. Hope you’re sorted out soon and go back to the blissful years!

It really does help, thank you 😊

I had Covid and it didn't do anything to me. Sorry I had the infusion and just stopped the AZA and Orencia for a week. No problem at all. I hope you get some relief soon.

Hi Haylonico, so sorry to hear you're poorly, I do hope it is a blip that will sort itself out with time as you have ok for such a long time. I was given prednisolone for flares for the first year or so, they worked really well but I kept going on and off them high and low as swellings went up and down. I honestly think they are a very good thing, as long as you can get off them in the end. I'm now on hydroxychloroquine alongside and I'm reducing the prednisolone very slowly and hope I can just finally take the H. If not I'll probably ask to go on Sulphasalazine eventually (they keep trying to get me to take Methotrexolate but I don't want it). Those two drugs seem to be the least problematic and work together, so maybe take the prednisolone for a while, reduce down slowly and if it doesn't help ask for Hydroxychloroquine. It has been really good for me. I have changed my diet, no wheat dairy, tomatoes and so on, it's hard not having coffee (now have decaf) but I still have wine which on and off and deal with the consequences (swollen fingers, knees and tiredness) which go away after a while, but I think all those changes to diet do help too. Try not to be downhearted, cortisone isn't the end of the world and if it gives you relief while you research and plan the next way to deal with this illness then go with it. It seems like it is all a learning curve, with changes along the way.

Haylonico profile image
Haylonico in reply to Gassin

Thank you so much. They want to get me back on the MTX too, I've had it before, alongside Sulfasalazine and Hydroxy, when I was really bad and over time, I tapered it right down to Sulfa only (for 7 years!), so Im very gutted to be be flaring now....I think you're right, some.steroids for now and I will ask for Hydroxy too alongside the Sulfa. They have also suggested Leflunomide as as alternative to MTX, but again, not keen- have you ever tried this?

Many thanks x

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