Revlimid side effects

[Rosemary]

Hi! I have been taking Revlimid (l0 mg per day) for MDS5q- low blood count for eighteen months, and it has done a great job in getting the blood count up, so I have not needed a blood transfusion since taking it. However, four months ago I started to develop neuropathy in my feet, which has spread to my ankles. I gather the nerve damage cannot be reversed, but my oncologist does not want to stop the Revlimid unless absolutely necessary as it is helping with the blood count. I am taking folic acid and Vit. B. complex for it, but it hasn't helped. Has anyone else out there experienced this side effect, and if so, how are you handling it? The pharmacy that dispenses the Revlimid tells me this side effect does happen with the Revlimid but of course I don't know anyone to contact.
Thanks for any help you can give me.

[Chirley]

Hi, My haematologist told me he had another patient who developed neuropathy and they started taking fish oil capsules with great effect. I think he was talking about a central neuropathy rather than a peripheral neuropathy but it's worth a go.

Good luck.

[Rosemary]

Thanks Chirley. I have been taking fish oil capsules for years already, so that didn't help. I am also rubbing in cocoa butter, which my oncologist recommended. If it doesn't help the neuropathy, I've got the softest feet in town.

[Dick S]

I had a neuropathy in both my feet and my toes turned purple and itched and stung. Went to neurologist and after a battery of test he determined it was Erythromalalgia which can be caused by MDS. He wanted to do some more test and obviously get more money out of me, but I noticed the website he was using and he wouldn't tell me the remedy. So, I went home and looked up what he was looking at on that website and it said the only cure for it was plain old ASPIRIN! ***** Now, be careful here and consult with your doctor because aspirin will thin your platelets.***** I checked with my Onc and he said give it a try. I took one daily dose of 3 at a time 325mg aspirin and repeated it the next day and the purple and itching and all went away. It mildly re-occurs from time to time and I just repeat and it goes away.
You may not have the same thing as I did , so please consult with your doctor before trying this, I am merely telling you what worked for me and I don't even play a doctor on TV.
Look up Erythromalagia yourself and see if it's similar first.

[Rosemary]

Originally Posted by Dick S

I had a neuropathy in both my feet and my toes turned purple and itched and stung. Went to neurologist and after a battery of test he determined it was Erythromalalgia which can be caused by MDS. He wanted to do some more test and obviously get more money out of me, but I noticed the website he was using and he wouldn't tell me the remedy. So, I went home and looked up what he was looking at on that website and it said the only cure for it was plain old ASPIRIN! ***** Now, be careful here and consult with your doctor because aspirin will thin your platelets.***** I checked with my Onc and he said give it a try. I took one daily dose of 3 at a time 325mg aspirin and repeated it the next day and the purple and itching and all went away. It mildly re-occurs from time to time and I just repeat and it goes away.
You may not have the same thing as I did , so please consult with your doctor before trying this, I am merely telling you what worked for me and I don't even play a doctor on TV.
Look up Erythromalagia yourself and see if it's similar first.

Thankyou Dick S. I am already taking one baby aspirin a day (for heart problems and to prevent the blood clots that are another side effect of Revlimid) and I will run what you tell me by the Oncology pharmacist and my own oncologists when I see them. Rest assured, I will never take any kind of medication without their approval.

Some days the neuropathy is better than others (it's usually a kind of numb feeling) but if I am not too well, it goes up my legs a bit also. It's usually better in the mornings, and improves when I keep moving around too, but by bedtime I can hardly feel my feet sometimes. They haven't turned purple or started hurting yet, so I suppose that's something to be thankful for.

Thanks again for the info. I will look up erythromalagia on a good web site.