Side effects of Lenalidomide

[EENP15]

Hi
I am a new member to this forum.
i was diagnosed in 2020 with MDS 5Q syndrome. I took Eprex injections for a period of time which improved my hb levels but due to some poss s/effects of the drug my consultant advised me to stop. I have since required 2 blood transfusions and am in discussion with my consultant about commencing on Lenalidomide. The poss. s/effects sound v worrying [ One of which although minor in the list is hair loss. This may appear vain but is a great concern of mine.]
I am asking for any of your experiences while taking Lenalidomide Ie success rate verses side effects.
Thank you for taking your time to read this. I hope some of you will feel able to respond.
Yours faithfully
Eirwen

[chris]

Dear Eirwen

I'm sorry it's taken me a while to respond. Busy life!

I understand your concerns with facing a decision about starting a new treatment and it's sensible for you to explore all the side effects before you decide - though it is always stated that not everybody will have the side effects stated on the patient information leaflet. Here is a link to patient information about Lenalidomide. I hope that any patients with experience of taking lenalidomide might post a reply to as I have no personal experience. You might note that there is a section in this leaflet (under Warnings and Precautions) specifically about MDS patients taking Lenalidomide and you might wish to ask your consultant about this and any other concerns that you have.

There were a lot of side effects listed but, oddly enough, I did not spot hair loss but there is certainly a lot to read through so I may have missed it!
https://www.medicines.org.uk/emc/product/13870/pil

I hope this helps a little.

Best wishes

Chris