[northumberlandcesParticipant]

Hi
My husband is almost 5 months SCT and started his maintenance lenalidamide 6 weeks ago. Toward the end of the 21 days he started with a rash all over his body except his head and face. He was told to leave his next lenalidamide for 7 days and was out on Dex and certrizine. The rash isn’t going away and now we are worried the maintenance chemo will have to stop.
No itching or pain with the rash.

Does this resonate with anyone and if so, did it get any better?

Thanks x

[lilibParticipant]

Hi Northumberland,

My husband’s experience of all over rash was with Thalidomide in the first treatment cycle. It started after about 5 weeks, and spread quite quickly over the whole body. After a pause, the drugs regime was changed to Lenalidomide (which we were told is related to Thalidomide), and he tolerated that without any problem at all. It seems that different people react to different drugs, and maybe you need to talk with your experts about trying an alternative.

Hope this helps.

Lili B x

[kh0305Moderator]

Hi Northumberlandces

I’m a forum volunteer on here and my dad has MM. He was also treated with Lenalidomide maintenance but he didn’t suffer any bad side effects. However, he did suffer bad side effects with Daratamumab and they were able to find him a different treatment which agreed better with him so it might be worthwhile asking the consultant team what the options are regarding treatment for the rash as I recall seeing others having suffered with a rash having some success with anti-histamines but also to understand if there are other maintenance options available of whether he needs the maintenance ongoing as not all MM sufferers do.
Sorry I can’t be of more help but hope this maybe gives you some other things to discuss with his medical team. xx

[mulberryParticipant]

I had a fairly extensive rash over my trunk area during the first or second cycle of VRd induction which my consultant said was due to lenalidomide (Revlimid.) I had a longer break between cycles and it gradually recovered without me needing to change treatments, although it took about a month to disappear completely.
I’m still on low dose lenalidomide nearly 4 years later and haven’t had any further rashes.

[tony642Moderator]

hi there,

have you tried to get a phone conversation with your consultant to see if can suggest an alternative drug? My experience is that they are very approachable in this regard if your current regime is causing difficulties. It is possible that he might be able to suggest alternative drug which might not have the same side effects.

regards, Tony

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