Any benefits to taking prednisone 5 mg for long Covid symptoms ?

Posted by radapanich @radapanich, Aug 30, 2023

An immunologist in NYC who works with long Covid patients prescribed prednisone 5 mg for my long Covid 19 symptoms: brain fog, fatigue , joint and muscle pain. I am already on low dose naltrexone (LDN), aspirin 84 mg and statin Lipitor 10mg. She said that all of those drugs can be helpful to address , micro blood clots, chronic inflammation associated with long Covid. Does anyone have experiences with using prednisone 5 mg daily? She also mentioned antivirals like Paxlovid , but stated that there were side effects. A few people on the forum mentioned Adderal for fatigue ? Comments and thoughts greatly appreciated !

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@bill77

If I may ask, this pain started for you after Covid? Did you have arthritis badly, before the Covid? 10 mg predisone is working for me now - though not the full 24 hours. I suspect 5 mg wont cut it for me. This morning I woke with really bad pains in both shoulders and knees until the prednisone and Ibuprofen kicked in an hour or so later.

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I had minor osteoarthritis but nothing that stopped me from walking my dog a couple miles daily or participating in marches that were up to 8 miles of walking and I could easily do this with nothing more than a dose of Advil.
This fever knocked me out in March ‘22 and I have felt like the tendons and joints have been invaded by a kudzu or ivy taking over a tree. No amount of PT or exercise has helped at all but instead made it worse.
My doc and rheumatologist are out of ideas if the Cosentyx doesn’t work. I’ve tried splints and boots and braces and cbd and thc along with all the other drugs I mentioned. Nothing touches this except prednisone. Even with the pred, I m not back to myself but I can function modestly at this level.
I’m sorry you are dealing with this too. It really sucks!

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@kyengler

I had minor osteoarthritis but nothing that stopped me from walking my dog a couple miles daily or participating in marches that were up to 8 miles of walking and I could easily do this with nothing more than a dose of Advil.
This fever knocked me out in March ‘22 and I have felt like the tendons and joints have been invaded by a kudzu or ivy taking over a tree. No amount of PT or exercise has helped at all but instead made it worse.
My doc and rheumatologist are out of ideas if the Cosentyx doesn’t work. I’ve tried splints and boots and braces and cbd and thc along with all the other drugs I mentioned. Nothing touches this except prednisone. Even with the pred, I m not back to myself but I can function modestly at this level.
I’m sorry you are dealing with this too. It really sucks!

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That must be hard to live with, very sorry you have this. Im guessing you have been tested for all the auto immune disorders that can mimic these symptoms?

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We’ve done lots of blood test, X-rays, fluid pulled from the joint tested, cat scans. All show that there is really nothing showing up and yet I am crippled like I have something terrible. Foot and ankle docs also stumped.
I’m hoping Hopkins can take on my case and look into things. I just need to get back to myself or closer to it. This has been the most frustrating experience of my life. I would take any drug if it worked and would never have said that 2 years ago. I took nothing besides an occasional Advil and even that was maybe once a month.
I wish you luck on your journey!

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@rsfcowgirl

This week, medical publications reported a PASC study that confirmed low cortisol levels are a biomarker of Long COVID. So therefore supplementation is the medical treatment for that. Low dose is the protocol.

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There are better forms of steroid supplementation for low cortisol levels than prednisone -- hydrocortisone is most often used in low adrenal states. Look forward to some studies evaluating the best form of therapy for low cortisol associated with Long Covid!

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@rsfcowgirl

I use the Medrol dose pak too. But I cut it in half and take half the descending dose. Works like a charm for me. Prednisone is sl different from methylprednisolone (Medrol Dosepack). They result in different side effects, if any are going to occur. I can't tolerate Prednisone but can tolerate Decadron and methylprednisolone well at low doses. And I get the same desired effect at half doses. One size does not fit all pharmacologically.
Sorry you didn't tolerate methylprednisolone. If you ever need it again, you might mention to your prescriber that you'd like to try a half dose. They should be agreeable based on your experience.

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Can you please explain " half the depending dose" ? Do you mean you just cut each 4 mg pill in half and discard rest? Or do you extend the taper as well -- half doses, twice as long ?

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How have you been since you posted your question? Has the doctor mentioned Paxlovid again as a med for LC treatment?
Hope you are feeling better.

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I just joined this discussion group and wanted to share some information. My wife has had long covid for about 1 1/2 years now. At first we had no idea what was going on. Her PCP wanted to try some "simpler" things first (taking her off of prescriptions) and we agreed. Unfortunately, that didn't help anything. After minimal response from the PCP my wife changed to a different one. In over a year now, this Nurse/Practiioner hasn't offered much help. In fact, at one time stating that she didn't know much about long covid. Not a crime, most of us didn't know much but she didn't make much effort to learn. Now, my wife has gotten to the point she can't drive and is largely housebound. Going to the store etc. is out of the question. In desparation, I have been searching the web and came upon this site. Noticing the comments about prednisone, I looked and found some small studies that supported the positive comments here. We took this to the PCP and she did give my wife 7 days of 10mg prednisone. The first three days didn't change much but on the 4th day it was like a light switch was thrown. Her weakness was reduced drastically, she was able to go to the store, and even suggested taking a short walk with our dog. Just a night and day difference. She asked the PCP for some sort of protocol (on for a month, off a month etc) and got a phone call today saying "No". If you crash again, come back in and I might give you another 7 days. Our feeling is that this isn't much help when we have something we know that works and in low dose there are numerous articles that it is safe. Has anyone ran into this? How did you resolve it? Is there any documentation showing that long term low dose is safe? Thanks for reading, guess I got a little verbose.

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@oldhiker73

I just joined this discussion group and wanted to share some information. My wife has had long covid for about 1 1/2 years now. At first we had no idea what was going on. Her PCP wanted to try some "simpler" things first (taking her off of prescriptions) and we agreed. Unfortunately, that didn't help anything. After minimal response from the PCP my wife changed to a different one. In over a year now, this Nurse/Practiioner hasn't offered much help. In fact, at one time stating that she didn't know much about long covid. Not a crime, most of us didn't know much but she didn't make much effort to learn. Now, my wife has gotten to the point she can't drive and is largely housebound. Going to the store etc. is out of the question. In desparation, I have been searching the web and came upon this site. Noticing the comments about prednisone, I looked and found some small studies that supported the positive comments here. We took this to the PCP and she did give my wife 7 days of 10mg prednisone. The first three days didn't change much but on the 4th day it was like a light switch was thrown. Her weakness was reduced drastically, she was able to go to the store, and even suggested taking a short walk with our dog. Just a night and day difference. She asked the PCP for some sort of protocol (on for a month, off a month etc) and got a phone call today saying "No". If you crash again, come back in and I might give you another 7 days. Our feeling is that this isn't much help when we have something we know that works and in low dose there are numerous articles that it is safe. Has anyone ran into this? How did you resolve it? Is there any documentation showing that long term low dose is safe? Thanks for reading, guess I got a little verbose.

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Welcome @oldhiker73, I know it has to be difficult trying to navigate the health system to find treatments that work to help your wife and long covid symptoms. While you wait for members with experience to respond, I thought I would share this Jan 2024 research article I found using Google Scholar (https://scholar.google.com/).

--- Feasibility, safety and effectiveness of prednisolone and vitamin B1, B6, and B12 in patients with post-COVID-19-syndrome (PreVitaCOV) – protocol of a randomised, double-blind, placebo-controlled multicentre trial in primary care (phase IIIb): https://link.springer.com/article/10.1186/s12879-023-08925-2.

There are also quite a few related discussions and comments on long Covid clinics that you might find helpful. Here is a link to the search results that lists the discussions and comments: https://connect.mayoclinic.org/search/discussions/?search=long%20covid%20clinic.

Have you thought about seeking help at a long Covid clinic?

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@johnbishop

Welcome @oldhiker73, I know it has to be difficult trying to navigate the health system to find treatments that work to help your wife and long covid symptoms. While you wait for members with experience to respond, I thought I would share this Jan 2024 research article I found using Google Scholar (https://scholar.google.com/).

--- Feasibility, safety and effectiveness of prednisolone and vitamin B1, B6, and B12 in patients with post-COVID-19-syndrome (PreVitaCOV) – protocol of a randomised, double-blind, placebo-controlled multicentre trial in primary care (phase IIIb): https://link.springer.com/article/10.1186/s12879-023-08925-2.

There are also quite a few related discussions and comments on long Covid clinics that you might find helpful. Here is a link to the search results that lists the discussions and comments: https://connect.mayoclinic.org/search/discussions/?search=long%20covid%20clinic.

Have you thought about seeking help at a long Covid clinic?

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Thanks for your response, the study results are what I was hoping to find. I have found a couple of small studies that show prednisone to be effective but the one you referenced has more detail to it. I downloaded it, my hope is that if we can meet with the Dr and present enough evidence to sway their opinion. My frustration is that we found something that works and now must play these games. We know massive doses would be bad, that is why you go low dose but I guess this treatment is "outside the box" and our local medical profession is locked into "we just don't do that". Part of the issue with living in a small town. We have considered a covid clinic but there isn't one close. We did print out Mayo's protocol but it starts with exercising to break the fatigue cycle and her PEMS is so bad that a mild 15 minute walking exercise put her down for two days. Endurance and conditioning are minimal after all this time, which is why we were excited to find something that made her feel like starting to exercise. We will keep plugging away!

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@oldhiker73

Thanks for your response, the study results are what I was hoping to find. I have found a couple of small studies that show prednisone to be effective but the one you referenced has more detail to it. I downloaded it, my hope is that if we can meet with the Dr and present enough evidence to sway their opinion. My frustration is that we found something that works and now must play these games. We know massive doses would be bad, that is why you go low dose but I guess this treatment is "outside the box" and our local medical profession is locked into "we just don't do that". Part of the issue with living in a small town. We have considered a covid clinic but there isn't one close. We did print out Mayo's protocol but it starts with exercising to break the fatigue cycle and her PEMS is so bad that a mild 15 minute walking exercise put her down for two days. Endurance and conditioning are minimal after all this time, which is why we were excited to find something that made her feel like starting to exercise. We will keep plugging away!

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I suffered since 7/2020 got worse with time, chronic fatigue, pain all the joints hurt, lost too much weight without trying. Finally had blood drawn and my C-reactive protein was very high. Diagnosed with PMR (Polymyalgia Rheumatica) from LC or the vaccine who knows which. I am on prednisone daily and it makes a world of difference. Not close to who i was, but can at least function. Now testing for MS.. You are a good hubby to help your wife. Thankfully I have a good one also. Take care and my best to you both.

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