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

[Hip]

I've been on several of the substances in that list for quite awhile and can't say they've done anything helpful for my NK function. It's one thing to read studies but another to experience something in realtime.

There are always people who do not respond to a treatment, so an N=1 case showing a negative result does not invalidate the studies. Here are three studies which indicate Biobran (MGN-3) boosts NK function:

Enhancement of human natural killer cell activity by modified arabinoxylan from rice bran (MGN-3)

Biobran/MGN-3, an arabinoxylan rice bran, enhances NK cell activity in geriatric subjects: A randomized, double-blind, placebo-controlled clinical trial

Arabinoxylan rice bran (MGN-3/Biobran) enhances natural killer cell-mediated cytotoxicity against neuroblastoma in vitro and in vivo


The other thing is, were your NK tests from a reliable lab?

Note that NK function test is not the same as the NK numbers test.


By the way, a study of Biobran (MGN-3) for ME/CFS patients found no benefit for ME/CFS.

 

[serg1942]

@Hip, @leokitten,

Thank you for letting me know about the studies on pentoxifylline as an anticancerous agent. I have done a further reading of the available literature on the subject, and indeed, there are many papers showing an antineoplasic effects of pentoxyfilline in different cancers in mice.

While this is encouraging, I must add that the opposite seems to be also true: pentoxifilline can promote cancer growth in mice. For example, pentoxifylline promotes colon adenocarcinoma-derived metastatic tumor growth in lungs and also in liver of mice:

https://www.spandidos-publications.com/10.3892/or.11.5.1121/abstract

https://pubmed.ncbi.nlm.nih.gov/14534700

Similarly, it strongly promoted rhabdomyosarcoma-derived tumor growth in mice:

https://pubmed.ncbi.nlm.nih.gov/7974171/

A possible explanation, beyond the suppression of cytotoxicity, can be that this drug increases blood flow in cancerous cells. Thus, a human study inserted a catheter in cancerous lymph nodes of 11 oncologic patients with different types of cancer (adenocarcinoma, squamous cell carcinoma, lymphoma, melanoma, and transitional cell carcinoma), and found that pentoxifilline actually increased the blood flux into the tumors, accounting for one of the reasons why it helps chemotherapy to work. However, enhancing blood circulation through the tumors is a way of "feeding" them:

https://www.sciencedirect.com/science/article/abs/pii/S0167814001004935

So, how is it possible to show one thing and the oposite at the same time? Well, it seems that pentoxyfilline has anticancerous properties, including antineolasic, antifibrotic, and antiinflammatory properties. It also works at a molecular level inducing cell apoptosis, and inhibiting adhesion molecules on cancerous cells.

But, as I reviewed above, it seems to lower NK (and probably CD8+) citotoxicity as well as other key aspects of a necessary cellular response against cancer. So, I guess that depending on the type of cancer, it's location, and host's immunity status, it will go one way or another (in this regard, the increased blood flow of pentoxifylline to tumors was shown to be dependent on the location of the tumor, in mice:
https://europepmc.org/article/pmc/pmc1968634).

However I'd like to make an important point: I am concerned about people with ME/CFS taking this drug. And, ME/CFS patients are already immune-suppressed, with a reduced Th1 and cellular innate (NK dependant) response. Obviously this could tip the balance towards unwanted side effects.

Also, many ME/CFS patients have tested positive for infections, including Lyme disease (I have, by CDC criteria, and meet ME/CFS diagnostic criteria as well).

So, do we know what might happen if we take pentoxifylline with a chronic infection? Well, here's a study showing that pentoxifilline worsens lung damage in mice with chronic tuberculosis:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783172/

In summary, I think I have reached a dead end regarding whether the use of pentoxifylline may be dangerous or not. We just do not have enough data, and prospective longitudinal trials in humans are needed.

I think I will err on the safe side though, and won't take this drug for now.

I'm sorry for the "assay"! I really appreciate your inputs and the debate!

Best,
Sergio

 

[serg1942]

Hi @Learner1

Thank you for your advice. I am so sorry that you had to face an advanced state cancer, and that after beating it you developed ME/CFS... (but hey, you beat it!).

I totally agree with you in that it is a wiser approach to "treat the terrain" first (as RichvanK used to put it!). In this regard, I am trying to effectively get rid of Borrelia Miyamotoi (the one I tested positive for) with the new drugs for persisters. I will be sending the samples next week to do the mycotoxins test as well. So yes, I am trying to get rid of the stressors and potential triggers of the "Dauer" state, and see how this works out.. However I must recognize that it is tempting to take a drug that might just "do the trick", so this exercise I'm doing of trying to "poke holes" in the possibility of taking this drug safely, is not an easy one!

Take care and thank you again!
Sergio

 

[stefanosstef]

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

 

[Learner1]

The other thing is, were you NK tests from a reliable lab?

Note that NK function test is not the same as the NK numbers test.

Yes. It was an NK function test ordered by a reputable lab.

By the way, a study of Biobran (MGN-3) for ME/CFS patients found no benefit for ME/CFS.

Well, then probably not worth taking.

I totally agree with you in that it is a wiser approach to "treat the terrain" first (as RichvanK used to put it!). In this regard, I am trying to effectively get rid of Borrelia Miyamotoi (the one I tested positive for) with the new drugs for persisters. I will be sending the samples next week to do the mycotoxins test as well. So yes, I am trying to get rid of the stressors and potential triggers of the "Dauer" state, and see how this works out.. However I must recognize that it is tempting to take a drug that might just "do the trick", so this exercise I'm doing of trying to "poke holes" in the possibility of taking this drug safely, is not an easy one!

That sounds like a wise approach.

Unfortunately, though we'd all like a magic bullet, it's unlikely one exists. The situation you just described has the original indilt yo the body, along with a cascade of other effects, so putting the genie back in the bottle is not so simple and why taking a substance affecting one piece of one's illness is unlikely to work if nig gone as a comprehensive approach attacking the other aspects.

In summary, I think I have reached a dead end regarding whether the use of pentoxifylline may be dangerous or not. We just do not have enough data, and prospective longitudinal trials in humans are needed.

I think I will err on the safe side though, and won't take this drug for now.

Sounds wise.

 

[leokitten]

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

I read you have to take it for a couple months to see full benefits or not.

 

[leokitten]

I’m giving it a try because it’s so cheap so I ordered it. Will take it for 3 months hope it helps with ME synonyms.

 

[serg1942]

I’m giving it a try because it’s so cheap so I ordered it. Will take it for 3 months hope it helps with ME synonyms.

I hope it works for you as well as it is still working for my friend!! Keep up posted, and if possible, try to check your perforin levels after a few months on it! Take care! Sergio

 

[mitoMAN]

I’m giving it a try because it’s so cheap so I ordered it. Will take it for 3 months hope it helps with ME synonyms.

Please keep us updated If you want we can make a #Pentoxifylline channel on the CFS Treatment discord

 

[leokitten]

@serg1942 what’s the dosage regimen this immunologist is prescribing to patients?

 

[serg1942]

@serg1942 what’s the dosage regimen this immunologist is prescribing to patients?

Sorry I couldn't reply earlier. He is prescribing 400 mg BID. My friend who is doing so amazingly well on it is on this dose.

However you'd still have room to raise the dose in the future up to 1200 mg daily.

I hope it helps! Please keep us posted!

Best wishes!
Sergio

 

[MartinK]

Hi @serg1942 sorry for this little off-topic post.
How it looks your b. miyamotoi treatment? And what test detect it? Phage from REDlabs? ;-) Thanks!

 

[Hufsamor]

She is doing amazingly well on this drug after about 2 months on it, to the point where she is feeling almost normal.

This is more than a month ago...is she still feeling good?

 

[serg1942]

Hi @serg1942 sorry for this little off-topic post.
How it looks your b. miyamotoi treatment? And what test detect it? Phage from REDlabs? ;-) Thanks!

Hi Martin,

I tested positive for B. Miyamotoi by the qPCR borrelia phage test from Redlabs. However, I had years ago a positive LTT and also an "almost" positive IgM Western Blot (one band was borderline, but considering that I usually had low total IgMs, this could be considered as a positive). My CD3-CD57+ cells are also always very low, with a normal CD38+, what I think makes a convincing case for a true active Lyme infection.

Unfortunately I have so many GI sensitivities, that I can't tolerate neither disulfiram nor dapsone, which are the cutting-edge and newest antibiotics that treat the persistent form of the borrelia... However, my partner, who also suffers from severe ME/CFS and is also positive for Lyme disease, took disulfiram for over 4 months, and her inflammatory markers normalized. However she is still with the same symtoms and she is still positive for Borrelia Miyanotoi. Now she is following the so called "double dapsone protocol" as published by Dr. Horowitz, including Dapsone, rifampicin, doxycycline, hydroxychloroquine, nystatin, methylene blue and very high doses of activated folates (plus probiotics, antioxidants and biofilm breakers). She is herxing like hell,so she is definitely killing bugs. Let's hope Dapsone does the work!

I hope this is helpful!

Sergio

 

[serg1942]

This is more than a month ago...is she still feeling good?

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

 

[Hufsamor]

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.

I’m wondering...is it possible the medication works mainly for thyroid issues?
@leokitten please let us know how it goes, if you decide to try ....
And the same goes for @stefanosstef of course.

 

[serg1942]

I’m wondering...is it possible the medication works mainly for thyroid issues?
@leokitten please let us know how it goes, if you decide to try ....
And the same goes for @stefanosstef of course.

I don't think it works at the thyroid level specifically.

When I reviewed the literature on this drug, I found a paper hypothesizing that it could reduce Hashimoto's, because autoimmunity is linked to chronic inflammation. So, you calm down your autoimmune T effector cells, and the attack to the thyroid is also reduced.

Here in Spain there are a few ME/CFS fellows that are trying it too, so we'll soon know if it works for many, or if my friend has just been lucky!

Best,
Sergio

 

[leokitten]

I’m wondering...is it possible the medication works mainly for thyroid issues?
@leokitten please let us know how it goes, if you decide to try ....
And the same goes for @stefanosstef of course.

I have pentoxifylline but trialing low dose abilify now so can’t mix. Might be a long while until I trial it. Also because this drug seems to take a couple months to notice any benefit or not complicates things

 

[Badpack]

@serg1942 any updates on your friend and the few ME/CFS fellows ?

 

[Badpack]

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