Side effects from pentoxifylline

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mellee
mellee Member Posts: 434
edited June 2019 in Radiation Therapy - Before, During, and After

I was prescribed pentoxifylline plus vitamin E to help prevent radiation-induced fibrosis. I'm curious to hear about others' experiences on it. The studies show you need to take it at minimum for 6 months and ideally for at least 2 years.

My problem is that they make me really sleepy. I'm supposed to take them 3 times a day, but I only got up to twice a day and was just sleeping round the clock. Anyone else experience this? What about other side effects. Do they go away over time?

I'd like to stay on the med but I have to be able to function!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2019

    I took it for about 9 months (don't quite remember at this point) without any problems. Are you also taking Vit. E with it? That was my protocol; I have no idea whether it would make any difference.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2019

    Are you sure it isn't the post rads that's making you sleepy? I am taking pentoxifyline now and not noticing that symptom but I am about 8 weeks post rads now.

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  • mellee
    mellee Member Posts: 434
    edited May 2019

    Pretty sure. Radiation didn't make me tired. I actually felt really good physically throughout.

    At first, I was wondering if the sleepiness was from my hormone shots which I started around the same time. But I stopped pentoxifylline for a week and the sleepiness went away. Now I'm back on 1/day (taken at night) and feeling okay although I'm definitely sleeping later than I usually do. I'm going to try going up to two again and see what happens. I'm hoping my body will adjust!

    It's funny, though, because even though sleepiness is only listed as an uncommon side effect, when I called my RO to ask about it, they were like, "Oh yeah, lots of women feel horrible on it! They're totally exhausted, body aches..." I kind of feel like that would be good info to have up front!

    Santabarbarian - do you notice any side effects at all?

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2019

    I got a little dizzy the first days of taking it, but now I don't notice anything... sometimes I forget to take 3 and only do two. But I do not notice any SEs.

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  • mellee
    mellee Member Posts: 434
    edited May 2019

    That's encouraging! I'm going to up my dose again and see how I feel. I'm usually not sensitive to medication, so maybe I'll have better luck this time.

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  • macb04
    macb04 Member Posts: 1,433
    edited June 2019

    I am also applying a specially Compounded Prescription Cream of Pentoxifylline and Vitamin E 5%/1%. I apply it to affected areas twice per day. Seems to really help.

    image

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  • mellee
    mellee Member Posts: 434
    edited June 2019

    That's super interesting! Thanks for the article, macb04. I'm going to ask my RO if he can prescribe me this cream and then track down a compounding pharmacy.

    Are you still taking oral pentoxifylline 3 times daily? How do you feel on it?

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  • macb04
    macb04 Member Posts: 1,433
    edited June 2019

    I took oral Pentoxifylline for about 4 plus years with the Topical Pentoxifylline. I had zero side effects, like none. I know it can have side effects, but I think the majority have no issues.

    Now I only apply the Topical Pentoxifylline and Vitamin E cream. It is close, but not completely the same, so I may start back up on the oral Pentoxifylline and Vitamin E again. The oral form works a bit better at reducing the rads fibrosis tightening under my arm.

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