I've had PMR for more that two years, am now down to 2.5 mg. A month ago I also had covid, like a very bad cold plus diarrhea. It lasted two weeks. Now I'm recovered from the covid I feel better than I have in more than a year. That dragging feeling of weakness and fatigue I've had for months has gone, I feel like my old self again. I am quite surprised.
PMR is an autoimmune disease- might it be improved if my immune system is given some real work to do so it stops attacking me?
I suspect a good shakeup of the immune system does it no harm if it brings it back to its senses!!!! Do hope it lasts.
I think you are on to something here, it definitely gets distracted and starts to do its job on real diseases. I hope it is permanently re-jigged.
Sounds very possible to me, it's like it's been given a complete reboot (to use a computer term) which has hopefully reset everything to the way it should be. Fingers crossed it lasts and certainly enjoy it whilst it does.
Interesting. Did you increase Pred during the Covid or stick at 2.5?
Lucky you. I had Covid April 2021 and all went haywire after that. The Covid wasnt bad but i didnt know about Sick Day Rules and didnt increase pred and the inflammation went wild all over my body. I had just reduced to 4mg from 5mg. Mine seemed to reset but not in a good way!
No, I didn't increase the P:red during the covid.
PMR is an autoimmune disease- might it be improved if my immune system is given some real work to do so it stops attacking me?
I like that idea very much - I am still testing positive for Covid nearly 3 weeks of catching it, the experience has not been good, the initial pains across my chest when I coughed were excruciating for 4 or 5 days, I had to wrap my arms across my chest as it felt as though it was going to explode. That has eased off now although the cough persisits, the runny nose is like a leaky tap and the dull echo inside my head is as though I have my head in a bucket.
After 2 weeks of Covid I managed to talk to a GP and asked him if, bearing in mind I had PMR, was taking Prednisolone and Methotrexate, could he recommend some form of medication to relieve my sympoms - his initial answer was a simple NO, he then went on to say, with my condition Covid could last for another 2-3 weeks or longer and that it would eventually clear up, meanwhile he recommended I drink lots of COLD fluids, get lots of fresh air, excercise and try not to sleep on my back.
Today I am feeling a little better, so fingers crossed I am on the mend and waiting to see what happens with the PMR
Well for a start - YOU NEED TO MISS THE MTX for a couple of weeks. That is a basic instruction when you start it: discontinue it if you are ill and until you are better. It is suppressing your immune system - no wonder it is taking longer to recover.
Thank you, I have not been told that ?????
It was emphasised to me. Have you a rheumy helpline? Though your GP should also be aware.
This is the handout from Oxford University Hospitals
ouh.nhs.uk/rheumatology/inf....
Since you don't get usually abx for Covid they may not have thought about it but this
ncbi.nlm.nih.gov/pmc/articl....
says
"Prednisone should be continued to prevent adrenal crisis in patients on long-term steroids.
Regardless of COVID-19 severity, hydroxychloroquine may be continued, but sulfasalazine, methotrexate, leflunomide, immunosuppressants, non–IL-6 biologics, and JAK inhibitors should be stopped."
This is from the Shropshire NHS
shropscommunityhealth.nhs.u...
and on the second page says
"What if I am unwell with an infection or symptoms of coronavirus (COVID-19)?
You should continue any steroids you are taking, and stop biologic and DMARD drugs:"
There are further details in the box below that statement but it won't let me copy it.
These are advisories issued previously, I can't find anything more up-to-date, The best people to ask will be the rheumy team - there is some discussion about stopping MTX in RA because some patients were flaring - not the same in PMR and personally I'd rather give my body a better chance to fight Covid off quicker as having it longer seems to make it more likely you could develop Long COvid.
WOW - Thank you PMRpro , I have had a quick look at those 3 links and gives me a lot to think about. Methotrexate should obviously have been a no no for the past couple of weeks, I am due to take next dose tomorrow so shall try to contact GP for advice, as I said earlier, my Covid symptoms have almost gone so maybe too late to stop the MTX
Just made a grown up decision, GP line engaged all the time so going to give MTX a miss this week and see how I get on
Good plan!
That decision sounds wise to me.
I’m surprised that you were not informed about holding MTX while ill with COVID (or other sicknesses), or while taking ABX, to give your body a better chance to fight off illness/infection. I had to stop it for weeks last winter when I was ill with everything going including a diverticulitis flare (I suspect because I was so immunocompromised while taking both pred and a fairly high dose of MTX). And one good thing about temporarily stopping MTX is that there is some flexibility in doing so without negative fallout….I didn’t have any symptoms return until I missed 3 weeks of MTX doses.
Hope you feel better soon.
Funny you should observe that - I felt exactly the same, as if I’d had some sort of re-set.
At the time I put it down to two things - a raging thirst which meant I was drinking fluids non-stop; lack of appetite meaning I went hours without eating, which I later realised had triggered autophagy, that sought-after state induced by intermittent fasting. I like your idea of the immune system getting a kick up the bum.
Needless to say, three years later I have fully returned to my painful, sluggish state / but it was good while it lasted!
Upcoming vaccinations for flu and Covid
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PMR after Covid vaccine?
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