Covid/PMR Questions

[Donna5658]

My husband just tested positive for Covid. My doctor had warned me that because of the prednisone, I needed to contact her if I had exposure to or showed symptoms of Covid or any other bug. My recollection is that she said if I got sick, she would increase my dose of prednisone since my own immune system was suppressed by the prednisone. Since I know prednisone makes one more susceptible to infection, this advice seems counterintuitive. Has anyone had any experience with Covid and PMR? If so, did you raise your prednisone dose? Did you take Paxlovid? Any suggestions for how to approach Covid when one has PMR would be greatly appreciated. (I have contacted my doctor and am waiting to hear back from her.)

[PMRpro Ambassador]

What dose of pred are you on at the moment? And how long have you been on it?

[Donna5658 in reply to PMRpro]

I just started on 9MG yesterday as part of DL’s 5 week taper. I was on 10MG for two and a half weeks before that.

[PMRpro Ambassador in reply to Donna5658]

That's not too bad - I suspect if you DO start with symptoms she will put it up though. You are in the USA are you? Your doctor is obviously aware of what are called Sick Day Rules - longterm steroid patients can't produce extra cortisol to deal with illness so they need a bit more, how much depends on the dose you are on. The instructions in the UK are to double the current dose up to a maximum of 20mg per day and in Covid it was 10mg 2x a day while ill. But don't increase until she tells you to and you might not get it!

I don't know what the rules are for Paxlovid are in the USA I'm afraid, You wouldn't necesssarily get it in the UK at 10mg and below. Do hope you don't get it.

[Donna5658 in reply to PMRpro]

Thanks PMRpro. Do you know anyone with PMR who took Paxlovid for Covid? I think I could get it, but the side-effects sound pretty daunting.

[PMRpro Ambassador in reply to Donna5658]

I think there are a few on the forum who have had it - mentioned in some replies here:

healthunlocked.com/pmrgcauk...

and the poster here

healthunlocked.com/pmrgcauk...

I searched paxlovid for covid and it gave me a load of posts about shingles and chicken pox!!! HU search is hopeless!

[PMRrunner in reply to Donna5658]

I've had covid twice the first time I took paxlovid the second time I didn't as my symptoms were very mild. I had no side effects from the paxlovid at all. I'm on prednisolone and methotrexate, both times I stopped the methotrexate till I felt better and didn't taper my prednisolone dose also till I felt better.

[Logic in reply to Donna5658]

My son and daughter-in-law both took it when they got cov. a few months ago. She was taking 8 mg of prednisone at time for PMR.He got sick from it. She was fine. They recovered about the same way. He stopped taking it after a couple of days.

[cranberryt in reply to PMRpro]

Doctors in the US don’t know/follow sick day rules unfortunately.

[PMRpro Ambassador in reply to cranberryt]

They do recognise them, the endocrinolgy society there has mentioned them, But non-endocrinologists tend to be a bit sketchy about them - in the UK too.

adrenalinsufficiency.org/wp...

and this brilliant resource was founded by doctors in the USA:

myendoconsult.com/learn/pri...

It is headed Primary adrenal sufficiency but the needs are identical for secondary adrenal sufficiency due to long term use of corticosteroids

[Donna5658 in reply to PMRpro]

Just to clarify. I had previously gotten down to 10 using DL’s 5 week taper. After 1 day of 9MG, I thought I was having a flare. Probably wasn’t, but went back up to 15, then 20 then 25 before realizing my gluteal pain was probably not a flare. So have been working my way back down to 10 and just yesterday 9.

[DorsetLady PMRGCAuk volunteer in reply to Donna5658]

If you type paxlovid into search facility p top right of screen - and then filter result for PMRGCAuk you find some posts……

[PMRpro Ambassador in reply to DorsetLady]

I tried that - and got loads of shingles vaccine posts!!!!!!

[PRL1957]

Hi, Donna5658,

This is how covid affected my wife and I when we caught it last month... but this should only be regarded as 'anecdotal' as other people may (probably will) react differently.

I started with symptoms (temperature up by 1°C and feeling a bit 'under the weather') but it was so mild, we thought it was just a cold. I was on 10mg/day prednisolone (for PMR) at the time and did not feel ill enough to implement the 'sick day rules' (i.e. I did not feel I needed to stay in bed or even slow down my usual routine).

Three days later, my wife (not on steroids) started with worse symptoms (higher temperature, loss of appetite, feeling tired and weak, loss of taste and smell). And - yes - she could have only caught what I had. It took her about a week before she started to feel a bit better and around 3 weeks to get back to anything like normal.

I did not take paxlovid (or any of the other covid drugs), but I was getting better before we even realised it was covid. I tested with a rapid antigen/lateral flow test (a year old) on my first day, and got a negative result (but we understand those tests are not always reliable. It was only when we considered my wife's symptoms and that covid cases were almost 3 times more prevalent than flu that we realised what we had caught.

We are in our mid-60's and have been vaccinated, but that was two years ago; we have not been 'boosted' since then, because it was the vaccine that started my PMR (either through the 'accumulated insults' mechanism, or because RNA is more inflammatory than protein vaccines).

So, we started off being worried about pred trashing my immune system, but ended up wondering whether it actually helped to suppress some of my covid symptoms - like dexamethasone did for severe cases in the early days. (I will run that past my rheumatologist when I next see him.)

But, as I said at the start, this is just how it was for us. 'Other etiologies and outcomes are available'.

And I hope you and your hasband have mild symptoms and recover soon!

[Donna5658 in reply to PRL1957]

Thank you for this helpful reply. Glad you did so relatively well with Covid and that your wife has recovered. I’m still waiting to see if I get it.

[Donna5658 in reply to PRL1957]

Hello again. I just re-read your reply to my post and want to thank you again for taking the time to give me such a comprehensive answer. I’m pretty sure the only Covid booster I received triggered my PMR as well. I am prone to autoimmune disease (MS, Grave’s Disease and now PMR) and I think the inflammatory hit my body took from my third exposure to the vaccine triggered the PMR. I am hesitant about taking Paxlovid should I get Covid as I have become somewhat paranoid since my booster/PMR experience. On the other hand, it does seem to lessen the severity of Covid in most people. So I’m left floundering in the throes of indecision. I am 73, so I suppose each increasing year makes the possibility of a difficult course of Covid more likely. Thanks again for your reply!

[PRL1957 in reply to Donna5658]

Thanks for your reply.

I can understand your hesitancy over the paxlovid. I am not an expert (a polymer scientist who only got interested in the medical literature since my PMR gave me 'skin in the game'), but I expect the action of the antivirals like paxlovid are well removed from the mechanisms involved in vaccination. I guess your MD would be able to advise you about whether it would further inflame your immune system.

Bottom line - I hope you don't catch covid and your husband is starting to recover by now.

[Lclmlbls]

I recently caught covid from my husband. Although I had symptoms, my tests were negative for 3 days then positive on the 4th day, 28th Feb. I started 15mg of pred on 15 Feb, so only 13 days before testing positive for covid. I was offered antiviral medication a few days later when my symptoms were waning so decided not to have it. I felt slightly worse this time than the first time I had covid but have now fully recovered.

Maybe I hadn’t been taking pred long enough for covid to have much of an effect.

[DakotaMae]

Hi Donna5658, my husband got covid last year. We are both vaccinated and boosted, but he got a breakthrough case when helping someone working on our shed and tested positive for 10 days. When I didn’t test positive around day five, I happened onto research that found the virus is not as contagious in fully vaccinated people. Later, the same happened to our son when his vaccinated SiL tested positive while visiting. None of them or our young granddaughter ever tested positive. Hopefully, this will also be your experience too, but I understand the daily torment of believing it will strike at any time. Wishing your husband a speedy recovery and peace of mind for you.

[cranberryt]

I was offered Paxlovid but declined it. I did up my prednisone from 2mg to 5mg for 2 weeks. My dr. wouldn’t give me extra (in US) so I had to be conservative with my supply. My dr. said if I got better and then worse again, it’s likely I got a secondary infection due to low immune system. That is exactly what happened. Terrible fever and started worsening on Day 6 so they gave me an antibiotic. I was basically in bed for a full week and then slowly improved from there. The worst part was climbing stairs as it would knock me down for a good 30 minutes. Rest as much as possible!

[Zareda]

The first time I had Covid while on prednisone, they did not raise my dose but I had to take the monoclonal antibodies due to the fact that I had Covid pneumonia. The second time I had Covid, I did nothing and maintained same dose of steroid.

[Rostom]

Hi Donna

I caught Covid last summer (and I know exactly who from but won't go into my 'friends' here!!) and when I saw the LFT was positive I followed instructions in the letter advising 'you might be suitable for treatments if you get coronavirus' that I had received regarding PMR and Covid.

I called 119 and they set in motion my attending the local hospital for an infusion. It all worked extremely well. The infusion took around half an hour and apart from being locked in a negative pressure room with no way to alert the staff that the infusion had finished, all went smoothly. I didn't change my Prednisolone dose.

I was actually admitted to hospital a few days later for something else - and kept in a locked room (unclean!) and they monitored me very closely but I was not very ill from Covid. I had a headache and was tired but had minimal problems breathing (I am asthmatic).

This was the second time I have caught Covid and was less ill this time, so I believe the infusion definitely helped me but of course, I will never know!

I wish your husband better and you, too, should you prove positive.

[Ozziedays]

hi, I caught Covid when I was on about 2.5mg pred daily. I was in Australia and had never heard of sick day rules so nothing changed. I was offered molnupiravir which I took, no side effects that I noticed. Recovered and continued my taper (got to zero 4 months ago but still taking MTX )

[PMRpro Ambassador in reply to Ozziedays]

hormones-australia.org.au/w...

endocrinesociety.org.au/res...

It is obviously a worldwide problem!!!!!

[Ozziedays in reply to PMRpro]

indeed, I only found out about such things when I discovered this site! I must have been very lucky as I came through various procedures / treatments during my time on pred in complete ignorance of sick day rules, card carrying etc. I did always mention it to health professionals who were treating me for other things but it never triggered any further questions or action.

(I’m now back in the UK)

[PMRpro Ambassador in reply to Ozziedays]

They aren't much better!

[PMRCanada]

I’ve had COVID a couple of times, May/2020 Beta stain, was bed ridden I’ll with fatigue, headache, sore throat for 14 days. Was on 9mg pred, advised to go up by 5mg for time symptoms were present and take Zinc, Vitamin C and plenty of fluids. No Paxlovid available back then. Ironically I got my first COVID vaccine the morning before COVID symptoms emerged and chalked it up to side effects from the shot.

I had it again last August, Omicron. Did not know until hubby got sick and I took a test. Symptoms much milder this time around, didn’t take Paxlovid. Didn’t increase pred dose either but did hold my weekly Methotrexate dose.

It does seem counterintuitive to increase the dose of the medication that is actually having an immunosuppressive effect on us. But I did have my GP mention that being on pred and increasing the dose helped me the first time around. All the best.

[artfingers]

As an aside, I still recommend boosters to all my friends and family. Here in the U.S. we are still awaiting definitive guidance on when to get a second bivalant booster. I found this interesting from the CDC: "If you become ill with COVID-19 after you received all COVID-19 vaccine doses recommended for you, you are also considered up to date. You do not need to be revaccinated or receive an additional booster. " (For a time, at least until it mutates again I suspect). Hope you avoid getting it and he gets better soon!

[Colleen1974]

I had Covid in December and was on 10mg pred. Did not know about sick day rules so did not increase. My husband and I took Paxlovid and both had rebound Covid. The 2nd Covid was the worst head cold I have had in my life. My husband had a cough that lasted weeks. We tested positive for 3 weeks. In hindsight I would skip the Paxlovid and take my chances.

[Donna5658 in reply to Colleen1974]

I’m so sorry for all of your misery. It’s so hard to decide these things when there are so many unknowns. My husband is considerably better after 24 hours on the Paxlovid, but from your experience it sounds like one can get worse on the rebound. Not really sure what I’ll do if I get it. I have ms, so that complicates things. Thanks for replying!

[Pass7]

I stopped MTX while on Paxlovid. Only side effect was I felt like an army lived n my mouth! Terrible taste for over a week. Must have been a mild case or Paxlovid did its job. Hubby never got it this go round.

[Donna5658 in reply to Pass7]

Thanks for your reply. What dose of prednisone were you on when you had Covid? Did you raise the dose at all while you were sick? Have you had Covid more than once? The Paxlovid is definitely helping with my husband’s symptoms. His fever is down and he has a little more energy.

[Pass7]

Prednisone about 13 mg. Didn’t raise at all. Yes, sadly twice. No Paxlovid first time & it was worse than when I used Paxlovid. Good for him. Hope you stay well.My hubby gave it to me the first time but he never got Covid when I got it the second time.