I am recovering from Covid. It has been 3 weeks since diagnosis and hospitalization.
I Was sick for a week prior to testing. What a miserable disease this is. I have finally reduced the steroids the hospital had me on to 15 mg. I don't feel so nervous and hungry. Unfortunately each try to reduce below 15mg ends up in painful neck, hips and thighs. I had reduced to 13&1/2 before this happened and I was so happy . For the first time in 6 years I was below 15mg. I guess I start all over again. Unfortunately I can't go back on the methotrexate for another 2 weeks, If I go back on it. I didn't really realize how awful I was feeling while on it until I went off of it.
Good luck to anyone who catches the virus, and good luck to all who are trying to reduce their steroid level.
Happy New Year
2022 Just has to be a better year
Written by
Linny3
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There is a whole load of things going on here - and your need for corticosteroids is raised because of being ill because of adrenal insufficiency and their inability to pitch in with increased cortisol production. As you recover from Covid it will eventually get less and you will manage to get lower.
I too couldn't believe how much better I felt OFF methotrexate than on it!
This is my first post tho I've been reading the site since diagnosed in March 2021, and have learned much from it. I had both Pfizer earlier in 2021, then woke on 3/2/21 unable to move my arms and in a lot of pain. As with others on here, I've wondered about a correlation to the vaccine.That day was told I had PMR (CRP was only 17 tho) as well as diabetes (didn't the previous October) and was put on Prednisone 10 mg. About a week later I saw the only Rheumy in the 4Corners/USA and she changed me to 20mg.
I was down to 15 in September when, like Linny3, I became extremely ill. Altho I'd been on Doxycycline for 6 days for an infection, I suddenly had a 103+fever and my CRP was 76. At the ER I was admitted to the CoVid floor, given massive steroids, other antibiotics, Remdisivir, and other drips, and was much improved so went home on many meds after 5 days.
Here's why I write: After 8 days of home care I was to stop the high dose steroid and return to the 15 mg Pred (for me that was Medrol 12mg). My GP said my body'd had such a shock, why not taper even further and see if I was ok? So two weeks post-CoVid I tapered to Medrol 8, a huge decrease in my opinion, and I was fine! I'm now doing a slow taper as I regain strength from the CoVid, tho still have a lot of fatigue, brain fog, hair loss, metallic food taste, and other post-CoVid issues.
My biggest problem, however, remains steroid side effects and I was to begin Actemra the week I got CoVid. Now that I've tapered a bit, and since Actemra is needed elsewhere, I'm simply doing the slow taper. After a challenging and sometimes miserable year, I believe slow tapering will work for me. Sorry to be so longwinded but "CoVid, steroids, and tapering" struck a nerve with me. Thanks for this forum, it's so beneficial.
Hang in there love - sounds horrendous! You seem to have survived despite the treatments instead of because of the treatments. Please be kind to yourself and call in whatever help you can get to fight with you till you’re better. I’m sending my best wishes for you. Bless.
What steroid side effects are a problem for you? If you ask, someone may be able to make suggestions - honestly, most steroid effects can be managed or mitigated when you know how and some of them are also caused by the PMR itself. Pred gets the blame for a lot of things.
Thanks PMRpro. My biggest steroid problem is lack of immunity such that I've had numerous skin infections including staph, and currently have shingles even tho I had the shot for it. I feel like a petri dish. In addition, things don't heal and I now go to a wound center. I had the tiniest cut on my shin that suddenly became a bigger wound requiring a lot of attention and medicines. I've been meticulous with my skin, cuts, and sores but still lose out to the steroid tho after 4 months it's healing. Very time consuming .
The shingles is a different problem - not an infection in the usual sense - but the skin infection problem certainly is. What an absolute pain - and non-healing wounds is a big concern, Hope they improve.
I am just curious as my brother is suffering this week from Covid. What did the hospital give you to help you and how long did it take you to recover? I hope you have a full recovery with no long haul symptoms!
I was given the Remdesivir protocal. It is all the Cleveland Clinic offers (much to my dismay)I was on oxygen for 2 days and High steroids (intravenous) for about 4 days, then switched to a lesser dose in pill form. Still having problems coming down off of the steroid. Can't get to the dose I was on.All the pmr symptoms keep coming back.
Also given blood thinner shots because of the worry of blood clots that Covid brings.
There are so may other interventions available that are safer then remdesivir. I was very surprised the Clev. clinic didn't offer anything else. I know a lot of people in others states that had the monoclonal antibodies and they breezed thru covid.
I was in the hospital 4 days, no lung problems and no blood clots. It has taken me about 3 weeks to feel somewhat like myself. I developed a fast heart beat . The dr. said he is sure it is covid related and will go away with time. So I am keeping an eye on that, it is kind of scary when it happens.
I pray your brother will be fine. Did he have the vaccines?
I did have the vaccines. I have friends that did not take the vaccines and refused the remdesvir and they spent a much longer time in the hospital.
Yes, he had two Moderna vaccines and a Moderna booster 21 days before his Xmas party. BUT people came who had Covid, everyone there was not vaccinated AND they refused to wear masks. Yes, I know, but he wouldn't listen to me and now is suffering for being so foolish. (Personally I would have not had the party and glad I did not go!). He has trouble fighting infections anyway due to his neutropenia. Anyway, I hunted down monoclonal antibodies and he gets those in two days at urgent care (7 days after infection so still good). That was a trip hunting those down here in Detroit area with so many folks sick with Covid. He is paying close attention to his symptoms. Of course he never could get his doctors to call him back, sheesh. That is why I do NOT have an HMO!
Artfingers asked about the treatment received for CoVid hospitalization. In addition to the Remdesivir, IV high dose steroids during then 8 days post hospital, IV antibiotics, blood thinner shots in the abdomen to prevent clots, IV potassium and magnesium (they said lost due to steroids?), I was on oxygen while hospitalized then for a month at home. I had pneumonia in one lung and remain surprised I got so sick while already on 6 days of Doxycycline antibiotic; the doctors said it kept me from having to go to the ICU so am lucky. I also developed a fast heart beat but it's very slowly declining, and I was told it was from the CoVid.
As for recovery, I still have fatigue after almost 4 months post-hospital tho it's much improved. But I still have wobbly issues, foggy brain mostly related to "connect the dot" problems, and significant hair loss starting at about 3 months out. My niece in Colorado started losing a lot of hair at about 3 months as well - so it's not unusual. She still has no sense of smell or taste, while I had both but mine was called "altered" taste - things tasted like metal.
All that said, getting CoVid while having PMR is problematic, and more so the greater the steroid dose. I wish we'd had monoclonal antibodies available in September as our hospital now does because that would have been a game changer.
"IV potassium and magnesium (they said lost due to steroids?)"Absolutely right - pred increases the loss of potassium and magnesium through the kidneys - it is a major cause of cramps in patients on pred and why we recommend magnesium supplements if it is a problem.
Loss of hair about 3 months after serious illness is common, not just with Covid. And while pneumonia is mostly due to an infection - the symptoms are due to tissue damage and it is that healing that takes the time.
"People who get pneumonia may also have a condition called acute respiratory distress syndrome (ARDS). It’s a disease that comes on quickly and causes breathing problems.
The new coronavirus causes severe inflammation in your lungs. It damages the cells and tissue that line the air sacs in your lungs. These sacs are where the oxygen you breathe is processed and delivered to your blood. The damage causes tissue to break off and clog your lungs. The walls of the sacs can thicken, making it very hard for you to breathe."
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