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Is anyone here taking Revlimid? If so please share with me

Blood Cancers & Disorders | Last Active: Dec 7 5:09pm | Replies (19)
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@tally9004

Hi,

My local doctor told me to stop taking the Revlimid a week ago and I did, The rash has subsided and does not itch any longer. I emailed my Myeloma specialist what was going on and they said to discontinue the drug. They have suggested lowering the dose to 10 or 15 mg and using an antihistamine, prednisone and a steroid cream if the rash returns. I have not seen my local doctor yet but I think that he will take me off the drug and not try a lower dose. Personally, I would like to attempt a lower dose and see what happens. I see my local doctor on 12/16.

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Replies to "Hi, My local doctor told me to stop taking the Revlimid a week ago and I..."
Ginger, Volunteer Mentor | @gingerw | Dec 7 5:09pm

@tally9004 Yes, when we get two differing opinions we need to seriously consider what is being said. Are you doing any other drugs besides the Revlimid, like Dexamethasone and Ninlaro?

I started on Revlimid August 2021, and except for a few months break last year, have been on it consistently. Recently we added Ninlaro to the regimen. Dexamethasone has been there since Aug 2021, first at 20mgs once a week, now at 12mg once a week since June 2023. Personally, I would follow the advice of my myeloma specialist, not a primary care, in how to handle the rash. Unless there is another protocol to change to, lowering the dose may balance the unwanted side effects. It may also slow down the response numbers, but you have to balance everything out. I had some slight rash on lower legs from the Revlimid, but using a high quality Vitamin E cream really helped, plus making sure my fluid intake was good.
Ginger

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