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

[Marylib]

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.

 

[leokitten]

@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.

 

[leokitten]

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.

 

[Hip]

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.

 

[Kulandai]

@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?

 

[Kulandai]

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?

 

[iliketoread]

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.

 

[J.G]

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?

 

[Shanti1]

@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.

 

[mitoMAN]

@leokitten how did your trial go?
I asked two other members that trialed the medication for 1-2 months with zero success

 

[Aidan Walsh]

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

 

[mitoMAN]

Any more patients tried this?

 

[Kulandai]

Any more patients tried this?

Yes, no change to symptoms

 

[mitoMAN]

Yes, no change to symptoms

how long have you been on it?

 

[Shanti1]

I'm still waiting for mine to come in, along with some other meds, but it is further down on my list of things to try at the moment. I will post here if I get around to trying it.

 

[mitoMAN]

@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.

@dylemmaz and @leokitten any Updates? I will start in a few weeks

 

[Kulandai]

how long have you been on it?

2 weeks stopped

 

[melihtas]

I took it for three months, no effect.

 

[mitoMAN]

As usually, when doctors claim a success rate of 50% (as seen in the first post of the thread) - numbers like this are never replicated in patient trials...

Thank you for all your input guys.

 

[leokitten]

@dylemmaz and @leokitten any Updates? I will start in a few weeks

I’m still taking it and it appears to help with some symptoms like chronic pain and aches I have in my extremities due to ME caused circulation problems, but doesn’t appear to have much effect on the most debilitating major ME symptoms. I have no side effects from it whatsoever, so that’s the reason im still taking it to help with these minor symptoms. The first couple months it does cause more loose stools or diarrhea but it goes away.