Atorvastatin -- Could It Work For Anyone Else?

[Hopefulone]

I now have no doubt that atorvastatin has been successful in helping me overcome ME/CFS, which I have had since 1994.

I would like to emphasise the fact that all this happened accidentally. When I started taking atorvastatin, no one had any idea that it could help ME/CFS. It took me a lot of research on the net to find a possible explanation for my recovery. I was fortunate to find an article by Dr Jacob Teitelbaum. This was posted in the Latest ME/CFS Research forum recently. (See https://www.psychologytoday.com/au/...ng-new-discovery-in-treating-cfs-fibromyalgia)

Remember that there hasn't even been a clinical trial of this treatment approach (to the best of my knowledge). So it is unknown how other people will react, and it is not known if the treatment will be harmful to some people.

 

[Hip]

I now have no doubt that atorvastatin has been successful in helping me overcome ME/CFS, which I have had since 1994.

I am a bit confused: in your recent intro post, you said that you have moderate ME/CFS. But here you are stating that you have recovered.

 

[Hopefulone]

I am a bit confused: in your recent intro post, you said that you have moderate ME/CFS. But here you are stating that you have recovered.

Yes, I did have moderate ME/CFS in September. I am improving daily, but there is obviously a long way to go to experience complete healing. At the moment, I have a lot of muscle fatigue in the legs probably because my muscles aren't used to doing as much as they have been doing.

 

[Wishful]

It's far too early for everyone here to go out and try it. It might be one of those things that corrects a medical abnormality unique to you, which in turn affects your ME. I have two things that work great for me, but don't seem to work on anyone else. I don't recall anyone else here reporting that statins helped their ME.

Some people just get lucky, and find something that works well for them, but them alone. Even if it only works for you, it still might help a researcher ask the question 'Why would this help someone with ME?' and maybe that will lead to a new line of research.

 

[Hip]

Yes, I did have moderate ME/CFS in September. I am improving daily, but there is obviously a long way to go to experience complete healing. At the moment, I have a lot of muscle fatigue in the legs probably because my muscles aren't used to doing as much as they have been doing.

Did you start taking atorvastatin in the last few months then, and you think that's what led to the big improvement in your ME/CFS over the last month?

 

[Hopefulone]

Even if it only works for you, it still might help a researcher ask the question 'Why would this help someone with ME?' and maybe that will lead to a new line of research.

I am hoping that a researcher will find some answers to why it has helped me. There is extremely little information around, apart from Dr Jacob Teitelbaum's article that I posted earlier.

 

[Hopefulone]

Did you start taking atorvastatin in the last few months then, and you think that's what led to the big improvement in your ME/CFS over the last month?

I had a stroke on 7th September. I was given atorvastatin in hospital to reduce my chance of having further strokes. As far as I can figure out, it is the only drug that I have ever taken that is theoretically capable of having some effect on the ME/CFS disease process.

 

[Wishful]

As far as I can figure out, it is the only drug that I have ever taken that is theoretically capable of having some effect on the ME/CFS disease process.

Hardly proof of connection. The two things that work well for me don't have any known theoretical reasons for working. Many (most?) things that did have theoretical bases for working on ME either didn't affect my symptoms or made them worse. It's hard to have a theoretical basis for a treatment for ME when we still don't know what ME actually is. So far it's mostly guesses.

Maybe your stroke triggered some change that caused the improvements. I'm not saying that the statin couldn't be responsible; just that the evidence for it is fairly weak. If you went on and off the drug several times, and your symptoms correlated with the drug level, that would be reasonably strong evidence.

 

[Hip]

I had a stroke on 7th September. I was given atorvastatin in hospital to reduce my chance of having further strokes.

Interesting, so the improvements in your ME/CFS appeared ever since you started that drug. Can I ask, once you started the atorvastatin, how long did it take before you began to notice improvements in your ME/CFS?

I see in your intro post you also mention that your ME/CFS is ' "chronic and relapsing" meaning that I have been relatively well followed by periods of moderate to severe symptoms'. Autoimmune diseases are often relapsing-remitting, so perhaps your ME/CFS might be autoimmune in nature.

I found this paper which observed that in brain-injured mice, atorvastatin increases T-reg cells (which may help suppress autoimmunity), reduces pro-inflammatory classical (M1) microglial activation in the brain, but increases the beneficial brain-repairing alternative (M2) form of microglial activation.

And I mentioned earlier in this post that atorvastatin is mildly antiviral for cytomegalovirus. Would you know if you have any chronic active viral infections (have you been tested for viruses), and in particular if you have cytomegalovirus?



Did the stroke had any negative effects on your brain, by the way? There is some research showing that hyperbaric oxygen can help in terms of brain repair after stroke — see this post.

 

[Hopefulone]

Interesting, so the improvements in your ME/CFS appeared ever since you started that drug. Can I ask, once you started the atorvastatin, how long did it take before you began to notice improvements in your ME/CFS?

In a few days.

Would you know if you have any chronic active viral infections (have you been tested for viruses), and in particular if you have cytomegalovirus?

I don't know if I had any chronic active viral infections, as I haven't been tested for viruses. However, I had severe glandular fever that led to ME/CFS. Suspect that the Epstein Barr virus has been bothering me ever since.

 

[Hip]

However, I had severe glandular fever that led to ME/CFS. Suspect that the Epstein Barr virus has been bothering me ever since.

Were you tested for EBV at the time of your glandular fever? Although glandular fever is caused by EBV 90% of the time, more rarely it can be caused by cytomegalovirus.

 

[Hip]

In a few days.

That seems far too fast to be due to an antiviral effect. In ME/CFS, antivirals take many months to begin to show effect. So for atorvastatin to start working within days suggests the benefits you are getting from it do not come from any antiviral effect, but may come from some other effect this drug has. Just what that effect might be is anyone's guess.

By the way, since you say your ME/CFS follows a relapsing-remitting course, how are you distinguishing the improvements in your ME/CFS symptoms obtained from atorvastatin, from the improvements in symptoms you spontaneously get every now and then via the relapsing-remitting course of your ME/CFS?

 

[Hopefulone]

By the way, since you say your ME/CFS follows a relapsing-remitting course, how are you distinguishing the improvements in your ME/CFS symptoms obtained from atorvastatin, from the improvements in symptoms you spontaneously get every now and then via the relapsing-remitting course of your ME/CFS?

I was struggling with a consistent fatigue pattern, and resting/ sleeping 13 hours in every 24 period. There was no hint of any improvement for a few years prior to September 2019. In fact, I seemed to be getting worse. That all changed a short time later. I have never had such a rapid improvement in my condition.

 

[pattismith]

@Hopefulone ,

your story is worth sharing, as it might help someone else, but lots of ME/CFS patients have low cholesterol.

And lot's of people don't tolerate statins because of muscle side effects:

"The reported incidence varies greatly, ranging between 5% and 29% with milder symptoms being common and, the rare, more serious form, rhabdomyolysis being far rarer with an incidence of approximately 1 in 10,000 "
...
"Some clinicians proceed to muscle biopsy and electron microscopy in severe cases. A case series of 279 biopsies from patients with statin myopathy show a 24% incidence (n = 67) of mitochondrial dysfunction on either histochemistry and/or electron microscopy [27]. Ten percent (n = 29) had abnormal respiratory chain enzyme activity"

 

[Hopefulone]

your story is worth sharing, as it might help someone else, but lots of ME/CFS patients have low cholesterol.

The only reason that I am on atorvastatin is that the hospital said that I was at high risk of another stroke. I don't know what my cholesterol level is, but it was never a problem before.

And lot's of people don't tolerate statins because of muscle side effects:

"The reported incidence varies greatly, ranging between 5% and 29% with milder symptoms being common and, the rare, more serious form, rhabdomyolysis being far rarer with an incidence of approximately 1 in 10,000 "
...

I am intending to reduce my dosage because it is at 80mg. I understand this is quite high and detrimental in the long term.

 

[pattismith]

I am intending to reduce my dosage because it is at 80mg. I understand this is quite high and detrimental in the long term.

sorry, I didn't mean you should change your dosage, it's fine if you can tolerate it and if you get benefit from it.
I just meant to make other people aware that it is not always a safe drug.

 

[pamojja]

The only reason that I am on atorvastatin is that the hospital said that I was at high risk of another stroke. I don't know what my cholesterol level is, but it was never a problem before.

Aside from its seemingly clear benefit to ME/CFS in your case, also be aware of it's numbers needed to treat (NNT) for stroke prevention:

Statins Given for 5 Years for Heart Disease Prevention (With Known Heart Disease) ​

​

83 for mortality​

​

In Summary, for those who took the statin for 5 years:​

​

Benefits in NNT​

• 1 in 83 were helped (life saved)
• 1 in 39 were helped (preventing non-fatal heart attack)
• 1 in 125 were helped (preventing stroke)

Harms in NNH​

• 1 in 100 were harmed (develop diabetes*)
• 1 in 10 were harmed (muscle damage)

*The development of diabetes is one such unanticipated harm found in a recent large study and it seems likely therefore that this applies to the data above, although this is a best guess.​

I highlighted the NNT for stroke in red. That means out of 125 patients who take statins for stroke prevention, in only 1 patient it actually did. But 124 actually had to take it without benefit in this respect. Nothing is known much beyond 5 years, since most RCT trials don't last longer.

 

[Hip]

I have never had such a rapid improvement in my condition.

Sounds great, Hopefulone, I hope your improved health continues.

I've got a few packets of atorvastatin here (as my mother was prescribed it, but she never used it). So I might try this drug myself. I also happen to have chronic active cytomegalovirus infection.



Do you happen to know whether your stroke was an thrombotic stroke (caused by a blood clot) which is the most common, or a hemorrhagic stroke (caused by a burst blood vessel)?

For thrombotic stroke, the supplement rutin (rutin comes from apples) may be effective for prevention, as it helps prevent blood clots. See this article.

Bromelain is also something to look at for blood clot prevention.

 

[Wishful]

I am intending to reduce my dosage because it is at 80mg.

That will be a useful test to see if the drug is responsible for the improvement, and whether it's dose-dependent. A lack of change won't necessarily disprove the connection, since some treatments aren't dose-dependent, but a positive result might interest researchers. If you could verify that atorvastatin does work for your ME, the drug company might fund some research.

 

[Hopefulone]

Sounds great, Hopefulone, I hope your improved health continues.

Thanks, and I hope that I am not the only one that might continue improving

I've got a few packets of atorvastatin here (as my mother was prescribed it, but she never used it). So I might try this drug myself. I also happen to have chronic active cytomegalovirus infection.

Please consult your doctor before taking atorvastatin, as it could have adverse side effects.

Do you happen to know whether your stroke was an thrombotic stroke (caused by a blood clot) which is the most common, or a hemorrhagic stroke (caused by a burst blood vessel)?

My stroke was a thrombotic stroke (caused by a blood clot).