[Catherine Davis]

Hi Billie – I am also on a low dose of revlimid. I started almost two years ago at 5mg but had too many side effects and felt awful I am now still on 5 mg but take it every other day. I take it continuously with no break. I still have a rash that causes itching but is tolerable and also have my bouts of diarrhea, which I also manage with Imodium.I never tried 2.5 mg and the 5 seems to be tolerable for me. There are just some side effects that will hang around as long as we take it. Good luck and I hope you begin feeling better.

[Catherine Davis]

Californiagirl – thanks so much for your response. It’s good to know that you haven’t had any major issues with the Revilmid. My doctor did mention possible rash at the beginning and the pharmicist said diarrhea is common and to take immodium if that develops. I look forward to getting started and hopefully getting back to some sort of life. Good luck to you also and thanks again for your response.

[Catherine Davis]

I also have Del 5(q) MDS. I was diagnosed about a year ago but according to what my doctor sees in my blood work, I have apparently had it for at least 10 years. I will be starting Revilmid probably next week, with the hope that it will improve mainly my extreme fatigue. I understand this drug has shown significant success with 5q patients. However, I don’t really understand what it does, how it works and what I should expect. Explanations from my doctor were kind of vague, leading me to think maybe not much is known about this drug – only that it does work. Is there anyone out there who has taken this drug and can tell me what your experience is or has been while on it? Thanks

Cathy

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