Pentoxifylline: shows amazing results but it's a potent immunesupresive agent: your opinion?

[Badpack]

Trailing it for about 2 weeks now. Does nothing besides making me sleepy. Not sure if something is still to come and the 2 months mark means something at all.

 

[serg1942]

strange how often ppl post "i cured cfs with breathing and butter" and then vanish forever

I'm so sorry for the late reply. It is difficult to keep up with all the social media plus making headway in research, plus taking care of myself, being so severely affected...:

My friend was doing still pretty well, doing kind of a normal life until 1 month ago, when she got a kidney infection and antibiotics knocked her dowm.. Now, I guess this will pass and will regain her baseline again.

I am however worried that this infection that seems to not go away easily might be a sign of her immune system being even more compromised by pentoxifylline. Only time will tell.

Will let you know how she does!!

Take care!
Sergio

 

[serg1942]

Trailing it for about 2 weeks now. Does nothing besides making me sleepy. Not sure if something is still to come and the 2 months mark means something at all.

Yes it does!! Give it at least 3 months. Feeling worse at the beginning seems normal!!!

 

[Badpack]

https://pubmed.ncbi.nlm.nih.gov/33231568/

here could be a clue why it could work. It elevates dopamine in the brain. Just like Abilify. I stoped taking it after i got heavy fever attacks. Never got them before, even with Cfs. Was a bit scary. But i used 400mg x3. Maybe i restart someday with 400mgx2 and see where it leads.

 

[MartinK]

https://ammes.org/treatment/pentoxifylline/

When I read this...I wonder - it also works similarly to nimodipine? Nimodipine is not immunosupresive agent I think - maybe better choice.

"Some clinicians have recommended pentoxifylline in ME/CFS to increase blood flow to the brain"

 

[Aspire2021]

Yes it does!! Give it at least 3 months. Feeling worse at the beginning seems normal!!!

Are you seeing any side effects in people with CFS who are starting this? Are you seeing any herx reactions

 

[Aspire2021]

@Badpack Can you elaborate on the fatigue you were feeling prior to the fever. Was it a wired and tired? More groggy? Also is it possible that you were Herxing? What was your dosing schedule and did you start off with 400 3x's a day?

 

[mitoMAN]

https://ammes.org/treatment/pentoxifylline/

When I read this...I wonder - it also works similarly to nimodipine? Nimodipine is not immunosupresive agent I think - maybe better choice.

"Some clinicians have recommended pentoxifylline in ME/CFS to increase blood flow to the brain"

Interesting. Here is probably the real reason why Pentoxifylline COULD work.
Contrary to Nimodipine, this would allow a better blood flow in the entire body?

Pentoxifylline may also address another blood problem common to ME/CFS. The late Dr. L.O. Simpson, a pathologist from the University of Otago Medical School in Dunedin, New Zealand, discovered that patients with ME/CFS had irregularly shaped red blood cells, making it more difficult for blood cells to pass through capillaries. Dr. Simpson believed the decreased cerebral blood flow in ME/CFS was the consequence of abnormally shaped blood cells. Many of the symptoms of inadequate blood supply such as light-headedness, vertigo, and cognitive problems might be alleviated if blood flow were increased.

Apart from pentoxifylline's well-known effects on blood flow, it also has broad antiviral activity. A study conducted in 1993 by a team of Russian scientists found that Trental [pentoxifylline] was an “effective broad spectrum virus inhibitor.” Pentoxifylline also has the ability to inhibit proinflammatory cytokines, which researchers have found to be upregulated in ME/CFS patients.

 

[leokitten]

I think nimopidine is a very different drug from pentoxifylline, it’s used to treat vasospasm and hypertension.

 

[Learner1]

The late Dr. L.O. Simpson, a pathologist from the University of Otago Medical School in Dunedin, New Zealand, discovered that patients with ME/CFS had irregularly shaped red blood cells, making it more difficult for blood cells to pass through capillaries. Dr. Simpson believed the decreased cerebral blood flow in ME/CFS was the consequence of abnormally shaped blood cells. Many of the symptoms of inadequate blood supply such as light-headedness, vertigo, and cognitive problems might be alleviated if blood flow were increased.

https://my.clevelandclinic.org/health/diseases/17732-vitamin-deficiency-anemia

 

[Martin aka paused||M.E.]

It did nothing for me except diarrhoea. But I tried it just for one month. Was that too short to be sure? How long does it normally take to see an effect?

 

[pattismith]

Pentoxifylline also has the ability to inhibit proinflammatory cytokines, which researchers have found to be upregulated in ME/CFS patients.

A 2021 research article may mitigate this anti-inflammatory effect, especially concerning IL-1β, not every dosing may be effective in this respect:

Furthermore, it has been shown that PTX can modulate IL-1β synthesis in response to LPS, the most effective proinflammatory stimuli [19], although the exact influence can be different in various tissues [11, 20, 21].

The results of the current study revealed that in all LPS-stimulated cell lines, PTX increased IL-1β release in a dosedependent manner.

However, this induction was diminished by the highest concentrations of PTX (100 µM and 1 mM) in endothelial cells

Effect-of-pentoxifylline-on-expression-of-proinflammatory-cytokines.pdf (researchgate.net)

 

[Aidan Walsh]

She is feeling incredibly well, doing a pretty normal life, although last time she told me how she waa doing, she said that she would still have to push herself further in order to ascertain the whole degree of her improvement...

Interestingly, her MQS seems to be pretty much gone too (again, she'd like to test herself getting exposed to more toxins). And, her Hashimoto's is also receding. She still hasn't meassured her thyroid auto-antibodies yet, but she has had to lower the dose of thyroid hormones, because she was showing signs of hyperthyroidism at her usual dose.

Finally, and I am sorry for being such a spoilsport, her NKs, CD8 and total T lymphocytes have all gone down. And this is in agreement with the studies I quoted here showing that this drug is an immunesupresive agent.

Best!
Sergio

Can the test for B. Myamotoi not be run on the United Kingdom NHS labs or even privately in the UK? What cost is involved to do where you mentioned?

 

[Learner1]

Can the test for B. Myamotoi not be run on the United Kingdom NHS labs or even privately? What cost is involved to do where you mentioned?

https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/64970

 

[Aidan Walsh]

strange how often ppl post "i cured cfs with breathing and butter" and then vanish forever

I have never seen the post on butter with breathing as well, I wonder about the fat content of butter I have heard it before someone was eating a full butter daily on a keto diet. Do you have the link on the butter mentioned? I think I may have seen this in a Keto diet before the Woman on a Facebook link 'The Business Person'

 

[Aidan Walsh]

https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/64970

thanks, Lerner, I am so sorry to learn of your Cancer3 diagnosis as well. Mayo won't be good to me in the UK

 

[leokitten]

It did nothing for me except diarrhoea. But I tried it just for one month. Was that too short to be sure? How long does it normally take to see an effect?

I believe I read it takes up to 2 months taking 800-1200 (2-3 times a day after food) to see full effects

 

[leokitten]

Pentoxifylline for vascular health: a brief review of the literature. McCarty et al. Open Heart (2016)

 

[leokitten]

I’ve started taking it now since a few weeks. Taking 400 mg bid (not tid). First two things I noticed is made me much more “regular” bathroom-wise and for me it’s a positive as ME unfortunately has given me periods of constipation which never had pre-ME, that’s gone now. I also already feel better circulation to my lower legs and feet which due to ME have felt like there’s really poor circulation to lower extremities causing them to hurt and to lose most of my subcutaneous tissue there.

I don’t think this is a drug that’s going to have a sudden or marked positive influence on ME symptoms that you will clearly notice even after a couple months. But it’s going to globally reduce inflammation, improve RBC deformability and viscosity issues, and all of its other potentially positive vascular and anti-inflammatory effects on ME pathology that over a longer span of time could promote improvement.

I think even if it doesn’t have a direct effect on ME symptoms it mostly likely will have a positive effect on ME compounded problems as we age… we cannot move very much, we cannot exercise, because of energy issues and PEM many times many of us haven’t had a good diet because you cannot cook, you know all the issues that come from having this illness long term. If it can help significantly improve general cardiovascular health parameters then that’s a good thing.

EDIT: and so far no side effects that I can report

 

[Marylib]

I might try this, it's OTC here and dirt chip.How soon do you get benefits if you respond to it?

@stefanosstef What country has it OTC - over the counter? Thanks.