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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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pentoxifylline
- Thread starter Bdeep86
- Start date
Hip
Senior Member
- Messages
- 17,873
You might want to do a search on the related drug propentofylline, as you will find more info on this.
CFS_for_19_years
Hoarder of biscuits
- Messages
- 2,396
- Location
- USA
There are a few posts here under the trade name Trental.
adreno
PR activist
- Messages
- 4,841
It gave me a massive headache. And hives.
Ema
Senior Member
- Messages
- 4,729
- Location
- Midwest USA
I actually just got a script for this to reduce inflammation.
I hope it doesn't give me hives!!
I hope it doesn't give me hives!!
I tried it for a time. It initially gave me a headache, but that went away with time. I lost a lot of weight on it - had no appetite at all. Overall, I'm not sure that it helped, although it did seem to help a bit with inflammation (redness in face lessened, less dry eye, etc.)
It does increase bleeding tendency, and many ME patients have elevated tPA to start, and sometimes abnormal clotting and/or fibrinolysis, and antiphospholipid syndrome is not uncommon (although I don't have it). If you have any tendency to bleed you need to be careful - and INR would be sensible to check in advance as well as some basic measures of fibrinolysis - including d-dimer/FDP and t-PA.
In general, I think it's a pretty safe med and a decent inflammatory. I'm not sure it really helps a lot in ME though - I've yet to hear of it really having a great effect in anyone.
I wonder if the headache is a general effect or something particularly common in ME.
It does increase bleeding tendency, and many ME patients have elevated tPA to start, and sometimes abnormal clotting and/or fibrinolysis, and antiphospholipid syndrome is not uncommon (although I don't have it). If you have any tendency to bleed you need to be careful - and INR would be sensible to check in advance as well as some basic measures of fibrinolysis - including d-dimer/FDP and t-PA.
In general, I think it's a pretty safe med and a decent inflammatory. I'm not sure it really helps a lot in ME though - I've yet to hear of it really having a great effect in anyone.
I wonder if the headache is a general effect or something particularly common in ME.