Paxlovid for Covid if you have PMR

[bluegirl7]

hi all. Living in France for 5 months didn’t think I would get Covid here but I did. I think it came with our guests on the plane. But in any case I have Paxlovid with me but I keep seeing things that say don’t take it if you have autoimmune disorder. Is that us? My doctor gave it to me but…. I am down to 1 mg of Pred now and have not been able to wean of it yet. Literature says it will increase side effects of Pred. I thought I had a very bad cold but I have high fevers and weakness and aches etc. I tested positive. One of my rheumy’s patients had such bad diarrhea she had to be hospitalized but she does not have PMR.

Anyway I am scared My husband is the one who had dangerous reaction to Moderna booster like GBS so I don’t like him being exposed. But he still carries lots of antibodies I believe and I probably now have none.

thanks in advance of advice and support.

Warmest regards.

[PMRpro Ambassador]

"I keep seeing things that say don’t take it if you have autoimmune disorder"

Where have you seen that? It isn't correct.

The primary reason for using it was for patients with poor immune systems or certain illnesses including a range of autoimmune disorders:

nhs.uk/medicines/paxlovid/w...

If you are concerned, call 111 and ask for advice although the 119 Covid helpline is still on until 1pm on a SAturday

nhs.uk/nhs-services/covid-1....

There are next to no side effects of 1mg pred and most on the forum who have taken it were taking considerably more than that.

[PMRpro Ambassador in reply to PMRpro]

Sorry - just discovered you are in the USA but I had to read all your posts to find that out, Please could you add it to your profile.

I don't know what emergency advice line you have access to, but it is perfectly safe to take Paxlovid when on pred and with an autoimmune disorder, it is who it is aimed at.

[bluegirl7 in reply to PMRpro]

Hello and thank you. I believe it said about autoimmune in info leaflet and then online from manufacturer but I am not sure. I have fever 102 and can’t see it. But what you say sounds like what I had remembered when it first came out. The bit about Prednisone was on Drug Intetaction Checker. But since I am on 1 mg I can stop for a few days or just skip a day which is what I normally do now. I am in France now until Sept 30. I will call pharmacist at 3 US time to check about all my other drugs but they like most folks I’m US don’t understand PMR. Thank you again as always.

[winfong]

I am in the US as well. When I got Covid, my rheumy put me on Paxlovid right away. The whole idea was that I was immunocompromised and could, thus, get a bad case of it. The Paxlovid worked like a charm.

I've been doing some quick searches on Dr Google and am not finding anything.

[bluegirl7 in reply to winfong]

Thank you. I will start it in the morning because it doesn’t seem like you should do it just pm. That will be 4 days since I was symptomatic which came so suddenly like I got hit by a truck Thursday afternoon. Wednesday I was climbing. AnywAy. We were to go to the Porquerolles for my birthday this week. Haven’t had a proper celebration for 4 years since my husband was ill and other things. But we are both alive and that is something we celebrate daily and hopefully I will get over this quickly and he won’t get it!!! Thank you again for your encouraging response. It still all remains so scary.

[Darkchocolate1]

I have PMR and was taking 15 mg prednisone when I got Covid. I was put on Paxlovid and it really helped in a few days I was back to normal. However, after a couple of more days I had a relapse but it was much milder, lower fever, etc and only lasted a few days. The Dr at ER told me to reduce my prednisone while on Paxlovid and I did with no problem until during the relapse of Covid. I had a flare of PMR pain but got it under control with a few days of higher dose. I would take it again if I get Covid again. The benefit for me outweighed the downside.

[winfong in reply to Darkchocolate1]

Didn't mention it earlier, but I had a rebound as well. Pretty mild though.

On the downside, I was down to 6 mgs (end of last November), and with one thing and another, am still not back down there again yet. In other words, the Covid wasnt that bad, but it screwed up my pred tapering regime somewhat royally.

[ProcrastiBaker]

I took Paxlovid last year when I was first diagnosed with PMR. No problem taking it in conjunction with the prednisone. The Covid was not bad either. Good luck.

[bluegirl7 in reply to ProcrastiBaker]

thank you. I started it this morning.

[Sharitone]

I had Paxlovid in January when I was still on pred. I wasn't given it until I had had Covid for nearly 3 days, but it worked very well, though it wasn't much fun taking it and I was very glad when the 5 days were up.

[winfong in reply to Sharitone]

Did you have side effects? What were they?

[bluegirl7 in reply to winfong]

hi I did ok with it and my husband as well. Only one time stomach upset and didn’t last too long. I was jumpy however and not sure if it was Covid or pax. I had no appetite at all and that had been made worse by no taste or smell. This did help with the metallic taste since I couldn’t taste anyway!!!! Happy when we finished it because it did sort of take over but it worked. Both of us tested negative yesterday and praying for no rebound. We are both very weak and forgetful but I think all that is Covid. We are grateful for takin Pax and especially that my husband didn’t have an antibody storm again which he got from the booster and it almost killed him. I am grateful to you and the others that helped me decide to take it. It kept us out of hospital and worse. So it’s a good thing. Now we just need to get rid of cold symptoms which are lingering, fatigue, brain fog and my loss of taste and smell!!!

Thank you again!!!

[Sharitone]

From the Paxlovid? After the first half-hour there was a disgusting metallic and sicky taste that was accumulative throughout the 5 days.🤢 But it went straight afterwards and so did the Covid, so it was a good trade. But I was VERY glad there wasn't a sixth day! My friend had the same experience.