Long COVID ME/CFS patient goes into remission after 3 weeks on the antiviral sofosbuvir

[Hip]

A long COVID patient on Reddit (Warm_Camera_7052) with ME/CFS symptoms reports that after he took the antiviral sofosbuvir for just 3 weeks, this put his illness into full remission.

He has only been in remission for one month though, so relapse remains a possibility. His brother with LC apparently also went into remission from the same drug.

This LC patient said he had the following ME/CFS-like symptoms:

Unrefreshed sleep, POTS, Mcas symptoms, headaches, brain fog, gut and digestive issues, severe weight loss, histamine reaction on sunlight (but not on food), strong heart beat that can be felt anywhere on the body, insomnia, constant heart palpitations, muscle twitching, exercise intolerance, blood pooling, visible blue veins, tinnitus, lots of burping, constipation, etc.

Due to these symptoms, I had to stop college, move to my parents house, and was 24/7 in the house. For these 2 years I basically didn't have a social life, as it was pointless to go out/socialize as well as tiring.

So being housebound, it sounds like he had moderate ME/CFS.

But note that he says he has no PEM, so whether he has the ME/CFS form of long COVID, or some other form of LC is not clear.


And he said this regarding his full remission:

I took sofosbuvir for 3 weeks, first 2 weeks I felt nothing, just some side effects like nausea and diarrhea, but they were mild.

But yesterday, I noticed no more POTS, brain fog or MCAS. I could jump, run without my heart rate exploding unlike before. It started to feel like pre-covid, it was surreal, like winning a million dollar lottery. I still can't describe this feeling as i'm still in shock. I will continue to take sofosbuvir for 4-5 more weeks.

The drug he used was Harvoni (sofosbuvir + ledipasvir), according to someone who PM'd him.

One systematic review and meta-analysis found that sofosbuvir + daclatasvir had benefits in acute COVID.

Sofosbuvir is also well known for its ability to totally eradicate chronic hepatitis C virus infection (it was the first antiviral drug apart from interferon to be able to fully eradicate this virus).

Ten years ago, it was hoped that sofosbuvir when it came out in 2013 would treat enterovirus ME/CFS, but it turned out that this antiviral had no in vitro effect against enterovirus.



This Reddit post details studies looking at the possibility that sofosbuvir can treat COVID.



Originally, when sofosbuvir came to market in 2013, a single 400 mg pill cost $1000!

Fortunately in 2018 Gilead Sciences authorised much cheaper generics, which costs as little as $5 per pill at the following pharmacies:

• Sofosbuvir = from $6 per 400 mg pill, see here - here - here - here
• Sofosbuvir + ledipasvir = from $15 per 400 mg of sofosbuvir, see here - here - here
• Sofosbuvir + daclatasvir = from $5 per 400 mg of sofosbuvir, see here - here
• Sofosbuvir + velpatasvir = from $6 per 400 mg of sofosbuvir, see here - here

The normal dose of sofosbuvir is 400 mg once daily.

 

[Viala]

Still not cheap but better than $1000 a pill. It's interesting that longcovidhaulers reddit has already more members than CFS/ME reddit.

 

[cheeseater]

There is no test to confirm CFS or long covid, but there is a test to confirm HepC. Curious if this fellow ever was tested for HepC?

 

[Hip]

UPDATE:

One more long COVID patient has gone into remission using sofosbuvir, and fourth patient observed some improvements but no remission.

 

[Hip]

Just looking at some of the user reviews for sofosbuvir at drugs.com, and it seems there are a few reports of side effects that have persisted even after the drug is stopped. Out of 50 user reviews, 4 users reported persistent side effects:

But here's the real problem. I am more fatigued now than during treatment. It's been 5 months and it's not getting any better. I get up early, exercise, have a healthy breakfast and I'm ready to get back into bed. It really sucks.

My husband took the sovaldi / ribavirin combination. He is free of hepatitis C now but is having major side effects still. My husband feels worse now then before treatment.

He has severe bone and joint pain throughout his body. He has itchy rashy skin, 30 lb weight gain, his thyroid is messed up and now having to take medication for it, chronic fatigue and has to nap daily. He has severe depression, difficulty dealing with people, explosive personality, difficulty concentrating, and more.

He is unable to work due to the pain, inability to fill out paperwork or anything due to concentration issues. He has lost interest in things he loved to do. He naps several hours a day. We have been to different doctors with no one able to help.

treatment stopped in sept. And in november the hep c is not detected in my blood. But I still have lasting side effects , don't think I'll ever be my old self again.

My father has started the treatment 2 months ago, and the virus in your blood lowed. However, the sides effects has being terrible. My father feel worse now than before the treatment. He has cognitives problems now, problems to speak, he lost interest in everything. We did a magnetic ressonation in your brain and they found a tumor probably linked to the medicine.

 

[Dude]

What is the theory behind this, why this might work?

 

[Hip]

What is the theory behind this, why this might work?

Because sofosbuvir may have antiviral effects against SARS-CoV-2, and one theory posits that long COVID is due to ongoing low-level SARS-CoV-2 infection.

In an in vitro model, sofosbuvir tightly binds SARS-CoV-2 RdRp, reducing the function of the protein and leading to viral eradication

Experimental studies have shown that SOF binds the SARS-CoV-2 RdRp protein by blocking its function and underlining its potential therapeutic role and that VEL, in a virtual molecular model screening for readily available drugs, was considered an attractive molecule for therapeutic use against the major protease (Mpro) of SARS-CoV-2, therefore creating the molecular basis for sequential antiviral treatment along the SARS-CoV-2 life cycle

Source: here

 

[godlovesatrier]

Do we have any toxicity info @Hip or any information about it's potential kidney or liver effects?

Is it as dangerous as faviparivir for example or as heavy on the body as PReP?

Liver toxicity associated with sofosbuvir, an NS5A inhibitor and ribavirin use​

https://www.sciencedirect.com/science/article/pii/S0168827815005899
There was no report of nephrotoxicity during clinical trials assessed sofosbuvir for treatment of hepatitis C (HCV) infection. This may be due to excluding patients with severe kidney dysfunction, as a main population at risk for drug-induced nephrotoxicity from these studies.
https://pubmed.ncbi.nlm.nih.gov/29533117/
@Pyrrhus Are you familair with this drug?

 

[Hip]

Another story from Reddit member "Live_Ear992" of improvements in long COVID after just 5 days of sofosbuvir alone (Hepcinat brand). Here are Live_Ear992's comments:

I’ve been on it for 5 days & really notice a difference. My PEM is nearly gone.

Had it [COVID] 4 times. Long hauler since March 2020. Tried so many things the last 3 plus years. Very excited a out this one!

My main issues were fatigue & PEM. I averaged about 4 hours or so a day of activity & then had to rest. Last few days I honestly feel totally normal. Been pushing myself as well, but no crash. I sorted my sleep out a few months ago when I went on HRT. Getting proper sleep helped alleviate the worst of LC symptoms. Before HRT my day was 2 hours of activity before crashing.

I am a long hauler. Caught it in first wave. I’ve had heart issues. Pneumonia 6 times - 4 times in 2020! I have had covid 4 times as well. First infection left me with angina for a year. Second infection the weird brain things started. Third infection more severe brain issues appeared - extreme short term memory loss, numbness on the left side of my body, balance issues, vertigo & more.

The balance stuff seem to go away when I took the acid reflux med Famotidine, but the executive function was really bad for 8 months. Weird thing is - it went away with infection number 4 last October. That infection seemed to go to my teeth. I had to have 2 root canals & an emergency molar extraction in Feb. Now an upper wisdom tooth is coming in! I’m 53 years old, so totally normal - right?

I have tried so many things. Truvada, Paxlovid, expensive supplements, ozone therapy (love it but not a cure) - but I feel dramatically better after taking sofosbuvir for a week. There was a study out a few days ago saying LC was caused by viral persistence & the immune system over reacting in some people. So maybe this AV helps to flush out bits V of the virus hiding out in our body? Dont know but it’s working.

 

[BrightCandle]

Another story of improvements in long COVID after just 5 days of sofosbuvir alone (Hepcinat brand).

Poll is 4 in 11 takers got better, 5 nothing happened and 2 got worse. Sounds like many people are trying Ledipasvir and Sofosbuvir but there lots of combinations here, no idea which the best is.

 

[Hip]

Sounds like many people are trying Ledipasvir and Sofosbuvir but there lots of combinations here, no idea which the best is.

"Live_Ear992" in that thread who noticed improvements after just 5 days said they are taking Hepcincat, which I think is just pure sofosbuvir (there is also a Hepcinat Lp which contains ledipasvir as well).

 

[BrightCandle]

The other antiviral that Brain Patterson was using was Maraviroc which is used against HIV. There has been some success there although also quite a few people get nothing from his treatment regime as well.

 

[Dude]

Have this lying around. Maybe i give it a try in a few weeks. Ill report back.

 

[Hip]

FDA warning about taking sofosbuvir if you have previously had hepatitis B virus: it can reactivate this virus again and cause liver issues.

Sofosbuvir can also cause reactivation of herpesviruses, and this might explain reports of sofosbuvir making long COVID patients feel worse in some cases.

 

[Hip]

Another report of long COVID patient "MetaMind" getting major benefits from sofosbuvir within 2 weeks:

I m taking Sofosbuvir for 2 weeks by now and all I can say is that I m completely awestruck...its the most beneficial medicine/supplement I ever tried for LC hands down.

The feeling of my brain is all glued up and thoughts need to be pushed heavily to get through and general feeling of a blank mind greatly deminished!

I really cant believe it and I m absolutely certain its no placebo or anything...I m so happy right now...2 years I was in this heavily mind obstructed state and finally just finally I see light at the end of the tunnel...its absolutely incredible!

MetaMind however says he gets no PEM and experiences no physical fatigue, so is not sure if he has the ME/CFS form of long COVID, or some other type of long COVID.

 

[Hip]

Just came across this study which found sofosbuvir works in vivo against enterovirus 71.

The authors report sofosbuvir was "highly protective against EV-A71 infection in vivo". So maybe sofosbuvir might work for other enteroviruses like coxsackievirus B. The paper concludes:

In conclusion, LY2334737 and sofosbuvir may be potential antivirals compounds against EV-A71 infection and could be tested against a wide range of viruses from Picornaviridae and Flaviviridae family.

Although I read in this PR post that when sofosbuvir was tested against enterovirus by Dr De Palma in Belgium, it did not show any antiviral effect. So it's not clear whether sofosbuvir might work for enteroviruses or not.

 

[Dude]

I started sofosbuvir today. My ME/CFS trigger wasn't covid, but some gastrointestinal virus. But who knows what will help. At least we have someone from the mecfs community who has tried it I'll get back to you with a conclusion.

 

[junkcrap50]

I started sofosbuvir today. My ME/CFS trigger wasn't covid, but some gastrointestinal virus. But who knows what will help. At least we have someone from the mecfs community who has tried it I'll get back to you with a conclusion.

Thanks. I was wondering if someone with non-Covid ME/CFS had tried it, but never saw any anecdotes.

 

[Hip]

I started sofosbuvir today. My ME/CFS trigger wasn't covid, but some gastrointestinal virus. But who knows what will help. At least we have someone from the mecfs community who has tried it I'll get back to you with a conclusion.

I've got some pure sofosbuvir on order, so will hopefully be trying this antiviral shortly. In my case, I have ME/CFS linked to active coxsackievirus B4 and cytomegalovirus infections, and a year ago I caught COVID, which made my ME/CFS a bit worse, so I may also now have an active SARS-CoV-2 infection as well.

The sofosbuvir might just target my COVID infection, but maybe might also work for the enterovirus infection.

 

[BrightCandle]

I started sofosbuvir today. My ME/CFS trigger wasn't covid, but some gastrointestinal virus. But who knows what will help. At least we have someone from the mecfs community who has tried it I'll get back to you with a conclusion.

Mine is on the way so I'll likely start middle of next month.