Pentoxifylline:
shows amazing results but it's a potent immunesupresive
agent: your opinion?
- Thread starterserg1942
- Start dateJan 5, 2021
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Hi guys,
I recently learned about pentoxifylline because it was prescribed to a friend
of mine with ME/CFS by an immunologist, who said that 50% of his ME/CFS
patients improved on it.
She was reassured that it was mainly an immune-modulator agent, so she had
nothing to worry about.
She is doing amazingly well on this drug after about 2 months on it, to the
point where she is feeling almost normal.
I have been doing a thorough research on the drug (because I was considering
trying it, as I am bedridden, so is my mom and my partner!). And I found that
it actually is a powerful immunesupresive agent. Most
available studies are done in vitro, and they show that it strongly decreases
NK cells cytotoxicity, inhibits fagocytic activity of
the PBMCs, inhibits T and B cell activation, inhibits expression of adhesion
molecules on the surface of CD4+ and CD8+ lymphocytes, lowers total count of
leukocytes, decreases neutrophil functions, reactivates CMV, and a long etc.
(links to the studies below). It's been also shown that pentoxifylline is as
immune supressive as dexamethasone.
I have only found 2 studies in vivo where immune system status was assessed. In
this respect, one study in humans confirmed what the studies in vitro had found
repeatedly: after 1 year or more on pentoxifylline, patients showed a 38% and a
41% reduction in NK cytotoxicity compared with patients or with healthy
controls, respectively.
The second study I found in humans showed an 11% reduction in leukocyte count
after just one month on the treatment, when given to diabetic patients.
I can understand how this drug can work amazingly for some patients. It lowers
TNF-alpha, which is a key cytokine in the feeling of fatigue. It also inhibits
the T and B polyclonal proliferation, and also quenches autoimmune processes
that might play a role in the pathogenesis of the disease. Moreover, it
inhibits the translation of the inflammatory complex NF-kappa B, which we know
is also key in ME/CFS pathophysiology. It even increases reduced glutathione
(what is to be expected when lowering inflammation) and improves
microcirculation.
Now, all this might come at a price, and it is my intention to figure out what
exactly this price may be.
A 40% reduction in vivo of NK cell function is just a lot. The relationship
between low NKs and cancer is certain. For example, there was a 23.6% higher
survival rate of gastric cancer patients in 5 years follow-up, if NK functionality
was more conserved:
https://pubmed.ncbi.nlm.nih.gov/11232710
In this regard I've done some research on the cancer-induced rate of immune
suppressive drugs when taken as a single treatment for autoimmune conditions.
Thus, a review on the subject explains how, for example, for multiple sclerosis
patients taking azathioprine, there's a 30% increase of cancer in less than 5
years, a 100% increase in 5-10 years and a 440% increase in more than 10 years.
Similarly, a mean of 8 years follow-up of patients with Wegener’s
granulomatosis taking cyclophosphamide showed a 2.4-fold overall increase in
malignancies per year. In the same vein, patients with psoriasis treated with
cyclophosphamide had a 2.1-fold increase of cancer in a 5 years follow-up.
A drug that could be compared to some extent to pentoxifylline is the anti
TNF-alpha Infliximab, given that pentoxifylline is known for its capacity to
lower TNF-alpha levels. In this case there are mixed results. For example, some
studies do not show more cancer rates in Crohn’s disease patients taking
Infliximab, but other trials demonstrated a 2-3 fold increase in the risk of
non-Hodgkin lymphomas, in patients with reumathoid
arthritis taking Infliximab (although to be fair, this comparison is not
completely adequate given that Infliximab is a single targeted drug, versus
pentoxifylline which shows immunesupresive properties
in numerous branches of the immune system):
https://pubmed.ncbi.nlm.nih.gov/12581698
https://pubmed.ncbi.nlm.nih.gov/1739240/
In summary, what I'm asking is not whether it would be worth taking the risk to
take immune suppressants in ME/CFS, as, of course, the answer is: it depends! .
What I'd like is for you to help me figure out the real risks in terms of
future cancer that might entail the chronic use of pentoxifylline.
Unfortunately this is a pretty cheap drug which have not been properly studied.
Thank you so much in advance for your insights and opinions,
Best!
Sergio
******
Bibliography:
- Pentoxifylline given to patients for more than a year showed a 38% and a 41%
less cytotoxicity compared to patients and controls, respectively:
https://link.springer.com/article/10.1007/PL00005346
- Pentoxifylline strongly suppressed NK cell function in vitro:
https://pubmed.ncbi.nlm.nih.gov/1593221/
- Pentoxifylline inhibits granzyme B and perforin expression following
T-lymphocyte activation by anti-CD3 antibody, in mice:
https://www.sciencedirect.com/science/article/abs/pii/S0192056196000690
- Pentoxifylline reduces pro-inflammatory cytokines and inhibits adhesion
between leukocytes and endothelial or epithelial cells. There may also be
inhibitory effects on neutrophil, T and B lymphocytes and NK cell activity:
https://www.sciencedirect.com/science/article/pii/B9780702028588500142
- Pentoxyfilline may inhibit HIV expression
indirectly by diminishing TNF production and directly, by decreasing activity
of NF-kappa B:
https://pubmed.ncbi.nlm.nih.gov/8699854/
- Pentoxifylline decreases neutrophil function, decreases leukocyte response
and proliferation, inhibits B and T cells and decreases Th1 cytokines and
increases Th2 cytokines:
https://onlinelibrary.wiley.com/doi/full/10.1002/vms3.204
- Pentoxifylline, after one month given to type-2 diabetes patients: decreases
11.1% of total leukocyte count, decreases CRP and ESR, and increases reduced
glutathione:
https://pubmed.ncbi.nlm.nih.gov/17613279
- Pentoxifylline inhibits binder and killer cell generation, cytotoxicity,
proliferation, regulation of surface antigen expression, and induction of cell
surface receptors:
https://link.springer.com/article/10.1007/BF01541173
- Pentoxifylline increases fibroblast collagenases and decreases collagen,
fibronectin and glycosaminoglycan production (...) Pentoxifylline is an
inhibitor of production of IL-1 and IL-6, an inhibitor of T and B cell
activation, and a suppressor of neutrophil degranulation:
https://escholarship.org/uc/item/6270c6vm
- Pentoxifylline Promotes Replication of Human Cytomegalovirus In Vivo and In
Vitro:
https://ashpublications.org/blood/a.../Pentoxifylline-Promotes-Replication-of-Human
- Pentoxifylline inhibits natural cytotoxicity as effectively as dexamethasone:
https://www.researchgate.net/public...forin-dependent_natural_cytotoxicity_in_vitro
- Pentoxifylline strongly reduces total number of monocytes capable of fagocytizing latex particles in vitro:
https://pubmed.ncbi.nlm.nih.gov/3023514/
- Pentoxifylline suppressed expression of adhesion molecules LFA-1 and VLA-4,
in CD4+ and CD8+ lymphocytes:
https://www.jni-journal.com/article/S0165-5728(96)00198-1/fulltext
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Not sure about the
answer but im so sorry you and your family is bed
bound. Hugs bro.,
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It’s definitely not
considered nearly as immunosuppressive as steroids as it doesn’t affect numbers
of circulating lymphocytes. Also it doesn’t have the horrible side effects of
steroids limiting their use for more than a few days at a time.
I read too that pentoxifylline also improves red blood cell deformability and
blood viscosity. Ron Davis’s lab wrote a paper showing reduced deformability in
ME/CFS
Red blood cell deformability is diminished in
patients with Chronic Fatigue Syndrome
Last edited: Jan
5, 2021
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In our country,
pentoxifylline is often prescribed to people with osteochondrosis. But I drank
without a prescription, we have it without a prescription. It had a very good
effect on performance, on eyesight, on hair loss, the skin on my face became
pink, healthy. But it caused some nervous excitement and intensification of my
neuralgia. So sorry. The effect was excellent, I did a lot of things. But to
endure severe pain is beyond my strength ..
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Thank you @bensmith! I really appreciate your comment!
Hi @leokitten, yes, pentoxyfylline does improve
RBCs deformability, and this is one of the reasons why it might be helpful in
ME/CFS.
When I say that it is considered as powerful as corticosteroids, it is because
an in vitro study shows a similar degree of immunesupression
as does dexamethasone, but this is just an in vitro assay:
"(...) pentoxifylline inhibits natural cytotoxicity as effectively as
dexamethasone. However, the result of PTX inhibitory influence is observed much
earlier than that of dexamethason (...)"
https://www.researchgate.net/public...forin-dependent_natural_cytotoxicity_in_vitro
And as far as not lowering circulating leukocytes, well it does lower in vivo
an 11.1% the total count of lymphocytes in just 1 month (as shown in a study I
posted above). However, what is more concerning to me is that this drug seems
to halter the functionality of white blood cells much more than their numbers.
Thus, It reduced a 40% the cytotoxicity of NKs in
vivo. And also over a 40% the Phagocytic capacity of monocytes in vitro...
But this is exactly the reason of my post: why doctors say that it is not immunesupresive despite of what the literature says?
Thank you for your opinion!
Best
Sergio
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Hi @Nat kea,
Thank you for you answer. I am so sorry that you had to stop it when you were seeing
so good results! It must have been frustrating! Thank you for letting me know
your experience!
Sergio
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But this is exactly
the reason of my post: why doctors say that it is not immunesupresive
despite of what the literature says?
Probably because they
do not see increased risk of infections from patients taking it long-term,
whereas with steroids this is not the case. People take pentoxifylline every
day long-term for peripheral artery disease.
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It's not surprising
that it works. I personally know of a few people with ME/CFS that has nearly
recovered on similar drugs such as Cellcept and Azathioprine.
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This drug may be
useful to people with hugh NK cells, high TNF alpha
and high neutrophil count.
@serg1942 , Do you know if your friend was in this subset?
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Lots of medication
inhibit TNF-alpha indirectly, the antidepressant bupropion is one example, but
millions of people take bupropion without any correlation drawn to cancer as
far as I know. Fish oil is another one, I have read studies that high-dose
especially lowers it quite a bit.
So yeah, this is more of an opinion, but based on the above two examples I
wouldn't be super concerned.
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Thank you guys for
your inputs!
@leokitten, you might be right (I hope you are for the sake of my fiend
and of those who choose to take it!). However, in ME/CFS, we have usually low
NKs and we barely show infections. Still, it's been shown that we have more
chances of getting cancer than general population. This is relatively easy to
explain, given that we lack a powerful Th1 and Th17 response (mainly CD8+) to
mount a proper response to infections. So, not showing infections doesn't
necessarily mean that pentoxifilie cannot entail
greater chances of developing cancer. Also, we don't know if pentoxyfylline is actually immune suppressing patients
taking it, because there haven't been proper studies conducted (and patients
taking it are usually elderly people with chronic diseases, so it would be hard
to discern a greater occurrence of cancer) . However the in vitro and limited
in vivo evidence still seems concerning to me.
Hi @pattismith, actually she usually has very low NKs, I think normal
neutrophils and I don't think she's measured TNF-alpha. But it is my gues that she must have had high TNF-alpha because she did
show high perforin levels, meaning that macrophages are trying to stimulate
NKs!
@crypt0cu1t, I agree with you. There are many immune-suppressive drugs on
the market yet to be explored for ME/CFS, which will show great benefits.
Hi @JES,
thank you for yor reply! Well, one thing is lowering
excessive inflammation (this is known as immune modulation, and as you say it
can be achieved by many molecules, including fish oil, turmeric, vit C, quercitine, LDN, etc.), and a very different one is immune-supression. Normally, immune modulation lowers inflammation
when high while increasing the immune system when low.
So, those of you who think that there's nothing to worry about with pentoxyfilline, how do you explain the literature I have
listed above? I mean, if reproduced by other studies, a 40% decrease in in vivo
NK function wouldn't be acceptable for any medication on the market...
Thank you all again for sharing your opinions!
Sergio
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well perhaps it could
be used as a research tool to explore the mechanics of me/cfs
if it is not suitable for long term consumption. Its
interesting to reconsider about rituximab responders.... being in the UK I have
not had any tests done via the NHS that would rule out being in the subgroup
which respond to rituximab. Does nobody find it remarkable that there are drugs
now which have been confirmed to be effective in some way ?
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Some years ago I tried
a related compound called propentofylline, and there is some
discussion about both propentofylline and pentoxifylline in this short thread.
(I experimented with propentofylline because it increases expression of brain
glutamate transporters, which remove glutamate from the brain; there's some
speculation that the "wired" feeling of ME/CFS may involve high brain
glutamate; propentofylline may have sharpened my mind and reduced my brain fog,
but I did not take it for long enough to fully evaluate the drug).
This is a report of an ME/CFS patient who tried
pentoxifylline for one month, but noticed no benefits.
New Patient? ➤ ME/CFS — A Roadmap for Testing and Treatment
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I recently learned
about pentoxifylline because it was prescribed to a friend of mine with ME/CFS
by an immunologist, who said that 50% of his ME/CFS patients improved on it.
I doubt about these
statements, similiar to another CFS doctor quoted
recently that claimed 90% Success Rate.
Rituximab trial ended up having less successrate then
the Placebo group.
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I doubt about these
statements, similiar to another CFS doctor quoted
recently that claimed 90% Success Rate.
Rituximab trial ended up having less successrate then
the Placebo group.
Well, yes, who
knows... I only know a friend of mine to whom it is working really well. But,
judging by its profile I wouldn't be surprised if it worked for many fellows...
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Hi @Hip,
thank you for your message. I didn't know about propentofylline. Is it also an antiinflammatory as pentoxifilline?.
Yes, I think there is some evidence on the high glutamatergic synapses in
ME/CFS, and I think this is the reason why clonazepam works for some of us,
when no benzo works.
Thank you for sharing the link. I'm going to read it. (It is interesting though
that pentoxifilie took 2 months to work for my
friend).
Take care,
Sergio
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@serg1942 I am a stage 3 cancer survivor and have spent quite a bit
of time in the cancer world in the past 6 years. I have met a number of people
who hit various cancers, typically lymphoma or leukemia, from being in
immunosuppressive drugs.
I think you are very wise to be concerned about the effects of pentoxyfilline. Many cancer treatments rely on NK cells
functioning to work, so anything that diminishes their function could be scary
- in fact, my low NK cell function has been a worry in case I experience a
recurrence.
It might be prudent to dig through the various effects it has on the immune
system, and maybe get tested for the problems that pentoxyfilline
seems to solve, and then figure out what's driving those - hidden infections,
some sort of toxicity (myctoxins?) or more likely,
some sort of autoimmunity and then treat those.
I know I've gotten a long way with antivirals, antibiotics, LDN, IVIG and
Rituximab to unwind the several serious problems we identified and ME/CFS that
I developed as a result of my cancer treatment.
If you use pentoxyfilline without any more in depth
investigation, I'm not sure you'd know what caused the problems in the first
place and there may be unexpected side effects or unwanted other problems that
develop, like cancer or sepsis, another common problem with immunosuppressants.
Best wishes....
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I would think that
unless you have an active cancer, the concern over reduced NK function from
pentoxifylline should not be an issue in a short term test, to see whether this
drug might improve your ME/CFS.
If pentoxifylline did substantially improve ME/CFS, and you thus wanted to take
it indefinitely as an ME/CFS treatment, that's when further investigation into
the consequences of reduced NK function might be warranted.
ME/CFS patients have reduced NK functioning anyway, and there's no evidence to
suggest this leads to a greater incidence of cancers in the ME/CFS patient
population.
In any case, there are a number of drugs and supplement
which can boost NK function, so these might be taken alongside pentoxifylline to counter
the NK suppression. For example, the supplement MGN3 Biobran
increases NK activity by 300%.
Interestingly enough, "pentoxifylline has been found to sensitize some
cancer cell lines to chemo- and radiotherapy". Ref: here.
And this study gave pentoxifylline 400 mg three times
daily for 12 months to breast cancer patients after radiotherapy treatment, and
the study concluded " the combination of pentoxifylline and vitamin E was
safe and may be used for the prevention of some radiation-induced
side-effects".
New Patient? ➤ ME/CFS — A Roadmap for Testing and Treatment
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There are many papers that
show the potential anticancer sensitizing effects of pentoxifylline when
combined with other cancer therapies.
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In any case, there are a number of drugs and supplement
which can boost NK function, so these might be taken alongside pentoxifylline to counter
the NK suppression. For example, the supplement MGN3 Biobran
increases NK activity by 300%.
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.
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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.
Last edited: Jan
8, 2021
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@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
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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
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I might try this, it's
OTC here and dirt chip.How soon do you get benefits
if you respond to it?
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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.
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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.
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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.
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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
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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
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@serg1942 what’s the dosage regimen this immunologist is prescribing
to patients?
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@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
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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!
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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?
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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
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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
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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.
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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
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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
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@serg1942 any updates on your friend and the few ME/CFS fellows ?
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strange how often ppl
post "i cured cfs with
breathing and butter" and then vanish forever
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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.
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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
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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!!!
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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.
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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"
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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
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@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?
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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.
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I think nimopidine is a very different drug from pentoxifylline,
it’s used to treat vasospasm and hypertension.
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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
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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?
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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)
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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?
Last edited: Jun
28, 2021
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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
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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'
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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
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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
Last edited: Jun
28, 2021
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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
Last edited: Aug
1, 2021
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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.
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I’ve started taking it
now since a few weeks. Taking 400 mg bid (not tid).
EDIT: and so far no side effects that I can report
@leokitten I am wondering how you got it? Did you
not need a prescription? Seems you are in the US. Glad you are not having
undesirable side effects so far. It seems like an interesting one to try. I do
take into account the negatives that others have expressed, so thanks to
everyone for your comments.
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@leokitten I am wondering how you got it? Did you
not need a prescription? Seems you are in the US. Glad you are not having
undesirable side effects so far. It seems like an interesting one to try. I do
take into account the negatives that others have expressed, so thanks to
everyone for your comments.
goldpharma.com shipped
from a pharmacy in Germany, though not sure now with supposed new EU-wide
import law changes if they can import to your country. I know there is no
problem shipping to US and UK from goldpharma.
EDIT: regarding potential negatives, if you take 400 mg bid instead of tid then reduces risk of side effects while I believe still
maximizing benefit if you make sure to buy the slow release tablets (I think
most if not all versions are slow release now) and take it after a meal. And
just bears repeating no one ever knows how it will affect without trialing,
though if you are very ME sensitive to meds then sure you can likely predict,
but if you are like me and don’t have sensitivity to many meds I try things because
could be I have little to no side effects.
Last edited: Aug
2, 2021
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In any case, there are a number of drugs and supplement
which can boost NK function, so these might be taken alongside pentoxifylline to counter
the NK suppression. For example, the supplement MGN3 Biobran
increases NK activity by 300%.
MGN3 Biobran is so super expensive! Unaffordable unless you have
a lot of extra money to burn.
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MGN3 Biobran is so super expensive! Unaffordable unless you have
a lot of extra money to burn.
And not only that, but
a study showed MGN3 is not helpful for ME/CFS.
New Patient? ➤ ME/CFS — A Roadmap for Testing and Treatment
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@leokitten I am wondering how you got it? Did you
not need a prescription? Seems you are in the US. Glad you are not having
undesirable side effects so far. It seems like an interesting one to try. I do
take into account the negatives that others have expressed, so thanks to
everyone for your comments.
Is this working for
you?
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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
1. What gains have you
had with this? For example from being housebound to going out to shop etc? To drive?
2. Would a lower dose be even safer - wonder?
3. Are there any natural compounds that might be similar?
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I've been interested
to try pentoxifylline. I heard about it when I got a book called "Ramsay's
Disease Myalgic Encephalomyelitis and the unfortunate
creation of CFS" by Leslie O. Simpson and Nancy Blake. The book was
supposed to tell you a treatment plan for me/cfs, so
I had to buy the book and it said the treatment is rest and 400mgs X3 daily of
pentoxifylline (also 4 grams evening primrose oil and 6 grams fish oils) bc there is an issue with the red blood cells - poor
deformability of red blood cells (meaning they're less flexible than they
should be) and can't circulate properly into areas such as capillaries.
So I bought some pentoxifylline (Trental) from Meds.com.mx a year ago, I don't recommend them they
didn't send everything I ordered. I started taking the Trental they sent and
also amantadine which was stupid bc about a week
later I developed a giant rash on the lower half of my face so I'm still not
sure if that was from the Trental, or the amantadine or wasn't from either bc it was freezing cold out and my face felt like stinging
from the cold air and just blew up into this rash.
I don't know, but I'm still interested in trying pentoxifylline if anyone knows
a good place to order this.
I strongly think that there is something going on with my veins or my blood
before I ever read about theories of the veins or blood could be underlying me/cfs. I have a serious case of freezing cold hands, nose,
ears, feet, and my upper back and I also think my face, head and neck pain are
caused by malfunction in the veins causing squeezing pain in my upper body.
It's like I have a giant vasospasm in all of the tiniest veins of my upper
body.
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I've been interested
to try pentoxifylline. I heard about it when I got a book called "Ramsay's
Disease Myalgic Encephalomyelitis and the unfortunate
creation of CFS" by Leslie O. Simpson and Nancy Blake. The book was
supposed to tell you a treatment plan for me/cfs, so
I had to buy the book and it said the treatment is rest and 400mgs X3 daily of
pentoxifylline.
Brilliant. This is the
information I was looking for. I don't have access to the book; does Simpson by
chance further elaborate on the pentoxyfilline dosing
regimen, such as starting low(er) and gradually working up to 400mg 3x day? I'm
also curious whether Simpson identified subsets in MECFS and, for example,
prescribed pentoxyfilline primarily to subset X. What
symptoms did he look for to assess whether pentoxyfilline
might be beneficial?
Last edited: Dec
5, 2021
ME/CFS blog @ www.brainfoggedphd.blogspot.co.uk
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@dylemmaz I'm I remembering right that you were
going to try pentoxyfilline? Do you mind if I ask how
it went? I have ordered it and should have it in a few weeks.
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@leokitten how did your trial go?
I asked two other members that trialed the medication for 1-2 months with zero
success
New #70
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I have seen some
patients diagnosed now with Eagle Syndrome their styloid on each side of the
neck, they also have Jugular compression between C1 & their skulls. Some C1
is picked up on CT Scans, others it is found on color
doppler ultrasounds checking blood flow in the Jugualtr
veins in the neck so maybe this medicine above is
increasing the blood flows or doing something to the veins so keep this in
mind. I know one Woman on Facebook Eagle Syndrome Group she had 2 Neuro
Surgeons present in her Surgeries one an ENT the other a Vascular Surgeon she
had styloid removed & Jugular C1 released she climbs mountains now &
lifts weights.
One Doctor also said she had also Altitude Sickness & suggested she go live
in Miami which she did as well. I have Eagle Syndrome now confirmed on both
sides of my neck by CT Contrast
New #71