Flare after covid for the second time

[Pawscat11]

Good morning I am in a sad place today and really need your help. After 3 years of PMR I was put on hydroxychloroquine as well and had managed to reduce the pred from 17.5 to 11.75mg which was the lowest I had been in at least 18 months and was completely pain free. I then got covid 4 weeks ago, I was not very ill but was given antivirals which I am sure helped. I then started a massive flare which is as bad as when I was diagnosed originally. I tried 4 days of 12.5mg but that didn't touch the sides so moved to 3 days of 15mg again no improvement. I am now on my 4th day of 20mg and had the worst night last night, back to the old days of not knowing how to lie as both hips and shoulders hurt and every time you move you wake up because of the pain. This morning I am so down with it all and dont know whether to try going up even further in pred strength. I feel all the hard work reducing has been for nothing and really am struggling at the thought of doing it all again. any advice would really be appreciated. My consultant is patient but will not be happy I have gone this far up again but she doesnt have to live with the pain and inability to function a flare causes. I had covid delta 18 months ago and it took 8 months to even get to a point of being able to start reducing. I dont know what to do next at all.

[DorsetLady PMRGCAuk volunteer]

oh dear,

Would have expected that 4 days at 20mg should have given a better result, maybe you need a bit longer at that dose , or as you say a little more ….

But think you do need medical input in case it’s not just PMR causing all the issues.

[PMRpro Ambassador]

You need to get hold of the consultant - although the symptoms are "PMR" there are various underlying causes and I would suspect this is more a reaction to Covid than "just" PMR. In fact, your struggles with reducing make me wonder if what you have is "just" PMR as we mean it. PMR is just the name for the set of symptoms - there are a lot of potential causes.

[Pawscat11 in reply to PMRpro]

Thank you for replying. I think I have had every test possible including a PET CT and in the end they all point to 'complex PMR' as my consultant calls it. Nothing else has shown up at all. I have seen 3 different consultants in Spain & I in UK and they all agree. But maybe its more a long covid type thing that wont respond to the steroids and may just take time. I may try one more increase to 25 and if it makes no difference at all I will come back down because no point in taking loads of steroids if they are not working. I will then get an appointment with my consultant.

[PMRpro Ambassador in reply to Pawscat11]

My daughter - younger and fitter than us - had Covid twice this summer. Both times it hung on. We have dodgy immune systems anyway so it is likely to hit us harder, Hydroxychloroquine doesn't have much of a reputation in PMR and is regarded as the "weakest" option. Most of the DMARDs used probably work for someone - but there are lots they don't work for so really it is a case of trial and error when the more extreme versions of PMR or GCA turn up. The trouble is, it takes a long time to identify what is best for you!

[sferios]

Hi. I know it's four months later but I'd love to hear what eventually happened with you. Did you go higher? What dose are you at now?

[Pawscat11 in reply to sferios]

HI there. I am now down to 12.5 mg as off tomorrow morning. I went up to 25 for 3 days and pain went so came down at 5mg to 20 for 5 days then 17.5 for 5 days then to 15mg. Doing very slower taper from there as everytime I get to 12.5mg the pain start again. BUT tomorrow I try 12.5mg again. I am still taking 200mg of hydroxychloroquine every evening.

Consultant is very sympathetic and just says take your time we will get below 10mmg. She is not pushing me to nil at all. Just below 10mg first