Post Covid PMR flare up.

[Cherryplum2000]

Can any one please advise. I Have had PMR for two and a half years and now on 3mg and was coping ok. In October I had the latest Covid jab. That night I coughed continuously and tested positive for Covid in the morning. I must have had Covid before having the vaccine without realising it.

Contacted GP who said this would cause a bad bout and I was very ill with Covid for over a month and still not right, have probably developed long Covid. I have had Covid in the past and it was never as bad as this episode.

In the last 6 weeks the PMR has flared up badly along with the arthritis in the hands.

Any suggestions for help would be appreciated. I understand there is a protocol for increasing steroids to 5mg for 5 days in a flare up and then reducing it to previous dose (3mg). Does anyone know anything about this.

thank you

[DorsetLady PMRGCAuk volunteer]

Not quite as you describe -by 5mg rather than to 5mg -and it’s in this link -

healthunlocked.com/pmrgcauk...

Think you might be confusing with sick day rules.

You might need to drop to just above previous dose if it’s a bad flare…

Hope it helps..

[PMRpro Ambassador in reply to DorsetLady]

Precious or previous?

[PMRpro Ambassador]

So you are saying the symptoms appeared soon after you recovered from the acute Covid symptoms? You DID have a bad bout of Covid as it happens but I'm really far from sure that was necessarily because of the jab. Though whatever - it was a rotten attack.

I'm also not convinced that trying the flare protocol will be enough - it is more for when you have overshot the dose you really need while tapering, This sounds more like the actual disease activity having increased after the immune system was upset by dealing with the Covid. You may have to prepare yourself for going back to a higher dose longer term. Long Covid is really just another autoimmune disorder - and often looks like other a/i disorders, especially if you already have one.

[Cherryplum2000 in reply to PMRpro]

Thank you so much for your reply. I was on 3mg when everything got worse possibly I had gone down too quickly aggravated by coping with the Covid. I will go up to 5mg for 7days and then to 4mg which I was ok with then taper down slowly from there again. Once again thank you. Jean

[PMRpro Ambassador in reply to Cherryplum2000]

Hope it does - are you sure 5mg is enough? It is 5mg ABOVE where you flared so possibly you might need 8mg before dropping back to 4mg.

[Cherryplum2000 in reply to PMRpro]

Thank you your reply. I was on 3mg before everything went pear shaped. I have now been on 5mg for three days and things are improving . I will stay here for another 5 days and then reduce to 4mg and all being well taper down 0.5mg monthly. Perhaps by August I may be down to 0mg but then pigs may fly 😀

[PMRpro Ambassador in reply to Cherryplum2000]

OK - just a bit more often works faster!!! And you are back to normal ...

Just don't set your heart on a specific date because that leads to disappointment when it doesn't happen.

[Cherryplum2000 in reply to PMRpro]

I think you are right. Pain not at all good today after Pilates class yesterday. Could you tell me the protocol for going up to 8mg, how long do I stay on it and do I then reduce it to 4mg which is 1mg higher than the 3mg I was on. I do appreciate your help. I will advise the GP of what I am doing but I believe your knowledge and experience is much more than the average GP has of PMR. Thank you. Jean

[PMRpro Ambassador in reply to Cherryplum2000]

Add the 5mg for up to 2 weeks - if you are really good after a week that may be enough - and then drop to 4mg. And see if that is still enough - sometimes with flares it changes a lot.

In Pilates, make sure you are at the baseline level and do half the reps to start with at most. Explain to the instructor - if they are any good they will warn you what is likely to be heavy going and what to avoid. Mine did. And make sure you are warm first - I did an aqua class or went in the steam room before the Pilates class.

[Cherryplum2000 in reply to PMRpro]

5mg and not 8mg? Pilates instructor also a physiotherapist who says many of her PMR clients have problems getting past 3 mg

[PMRpro Ambassador in reply to Cherryplum2000]

ADD 5mg to the dose at which you flared, so a total of 8mg.

I can believe it - shame she doesn't tell the doctors!!!

[DorsetLady PMRGCAuk volunteer in reply to Cherryplum2000]

This contains advice for flare -

healthunlocked.com/pmrgcauk...

did link earlier in post

[Cherryplum2000 in reply to DorsetLady]

Thank you for your help. I did contact surgery to explain what I was doing and why regarding Pred. I got a response the same day from gp saying stay on the 4mg for 6 weeks before trying any reduction. Incidently GPs in this area have what they call an Anima way of contact which means you contact them first thing in the morning on line on their site where you can write your exact problem and it is assessed straight away and given appropriate action. For me it works much better than their old system of a phone queue for a receptionist.

[PMRpro Ambassador in reply to Cherryplum2000]

Well that one sounds a keeper!!!!