• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Has anyone with ME (irrespective of COVID status) been on PAXLOVID?

Messages
75
i was moderate to severe when i catch the omicron variant , my bf came Sunday positive at home coughing (knowing i am severe immunecompromised, yeah ) and i started with symptoms at monday. It went very very quickly. Tried 2 days ivermectine but i was going worse and worse so i had to be interned in hospital. I got monoclonal antibodies. I went home the day after, so weak i couldnt even sit and speak and i found a doctor who prescribed me Paxlovid , but telling my bf ( or ex afterall) he doesnt responsabilize and its very dangerous.
I started yesterday night and was terrified as i have mild renal impairment, liver problems with detox, MCAS, MCS, autoimmune illness, hashimoto, adrenal disease, heart problems and i am on Fluoxetine. But i cant get sicker with covid.
I am feeling better this morning , just noticing my right kidney hurting. I pray it goes well.
I am not vaccinated doe to my severe MCAS
 
Messages
4
Before I begin I want to apologize for the poor formatting. I am typing this on my phone and I expect the formatting will be less than optimal.

I know this thread is a few months old at this point but I wanted to add my experience here. I was diagnosed with ME/CFS in 2015 and have had moderate symptoms for the past 8 years. (1 year of seeing so many doctors that I can’t remember them all just trying to find out what was wrong with me and 7 years diagnosed) For about 3 years now I have had a decent handle on how much mental/physical energy I can afford to expend to keep myself from having a run of bad days/weeks.

I contracted Covid about four weeks ago (around May 20th) and was prescribed Paxlovid. The only side effect I experienced was a bitter taste in my mouth starting about 1 hour after taking each pill. (Both morning and night pill). On the morning of the third day I woke up feeling more clear headed and energized than I had felt in the past 8 years. I still had all of the Covid symptoms (like cough, headache, general crummy feeling) but even with all of that I still felt better than I had in 8 years. As the week went on the Covid symptoms began to fade (the cough was last to go).

The Paxlovid included 10 pills (1 morning and 1 night) for 5 days. My Covid symptoms, except for the cough, were gone after about the eighth day but more importantly my ME/CFS symptoms were much less pronounced. I would say at its peak 40-60% better than what my normal baseline had been. The bad news is that they slowly started to come back. The good news is that as of this AM I would still consider the way I feel as 10% better than my pre-Paxlovid baseline. I don’t know whether or not the last 10% of “goodness” will fade but I am getting ready to wear out the search bar to see if any other antiviral medicines have yielded positive results. My doctor was so encouraged by these results that she is willing to try other “longer term” (especially those with less potential side effects) antivirals to see if we can find one that will give me my life back. At this point I am cautiously optimistic and I will keep my fellow sufferers posted.
 

BrightCandle

Senior Member
Messages
1,152
I saw the same think with auto vaccines actually. The Ismigen was beneficial and gave me a few weeks of decent improvement but I have descended back. People do often report getting the immune system to focus on something else can improve how we feel temporarily.
 
Last edited:

Guwop2

Senior Member
Messages
228
Before I begin I want to apologize for the poor formatting. I am typing this on my phone and I expect the formatting will be less than optimal.

I know this thread is a few months old at this point but I wanted to add my experience here. I was diagnosed with ME/CFS in 2015 and have had moderate symptoms for the past 8 years. (1 year of seeing so many doctors that I can’t remember them all just trying to find out what was wrong with me and 7 years diagnosed) For about 3 years now I have had a decent handle on how much mental/physical energy I can afford to expend to keep myself from having a run of bad days/weeks.

I contracted Covid about four weeks ago (around May 20th) and was prescribed Paxlovid. The only side effect I experienced was a bitter taste in my mouth starting about 1 hour after taking each pill. (Both morning and night pill). On the morning of the third day I woke up feeling more clear headed and energized than I had felt in the past 8 years. I still had all of the Covid symptoms (like cough, headache, general crummy feeling) but even with all of that I still felt better than I had in 8 years. As the week went on the Covid symptoms began to fade (the cough was last to go).

The Paxlovid included 10 pills (1 morning and 1 night) for 5 days. My Covid symptoms, except for the cough, were gone after about the eighth day but more importantly my ME/CFS symptoms were much less pronounced. I would say at its peak 40-60% better than what my normal baseline had been. The bad news is that they slowly started to come back. The good news is that as of this AM I would still consider the way I feel as 10% better than my pre-Paxlovid baseline. I don’t know whether or not the last 10% of “goodness” will fade but I am getting ready to wear out the search bar to see if any other antiviral medicines have yielded positive results. My doctor was so encouraged by these results that she is willing to try other “longer term” (especially those with less potential side effects) antivirals to see if we can find one that will give me my life back. At this point I am cautiously optimistic and I will keep my fellow sufferers posted.

How did you get hold of Paxlovid? I was told by a private doctor in the U.K that it would be impossible for him to prescribe it (that was a few months back, however).