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

I 'had' M M. Diagnosed six years ago. Took Revlamid DAILY until two months ago. Now I have leukemia-ALL. Maybe the Revlamid should have had breaks in the use of it as seems to be common. I had no side effects that I noticed except for the current cancer that may be related.

@stanmurray Has your medical team told you the Revlimid is a contributing factor to the ALL leukemia? When a person's immune system is compromised in some way, other disease factors may raise their head.

I was diagnosed with active MM a year ago, and just started taking revlimid, three weeks on, one week off. At this time, no side effects except a mild rash on my lower legs, benefiting from cream and benadryl.
Ginger

The 'Docs' probably don't want to mention the connection..Revlimid/ALL. I always felt lucky to be healthy for years after the initial MM. No upside to mentioning the possible connection now except that the MM Doc may be 'wised up' regarding never reducing the daily Revlimid dose for the his current and future patients. I just remembered..I have been healthy but did have spinal compression fractures that left me 3 or 4 inches 'less tall' and gave me pain fairly constantly..small doses of morphine helped.

I developed a rash when I began taking 10 mgs Revlimid. It covered my arms and torso, but it didn't itch, my numbers were improging, so we rode it out. After about 3 months the rash disappeared. Then my doctor moved me to the generic. I developed a horrible rash, one so bad we stopped all treatments for a month. My numbers skyrocketed. I'm now back on Revlimid, the numbers are improving, and there doesn't seem to be a rash of any consequence.

I was diagnosed almost 4 years ago with multiple myeloma. I took Revlimid for two years before I was diagnosed with melanoma. Be aware that studies have shown Revlimid can cause secondary cancer namely melanoma. I was taken off Revlimid immediately when I was diagnosed with Revlimid. Both my hematologist at Mayo and Dana Farber agreed.

Hi, I was wondering if anyone had a rash from taking Revlimid and how did your doctor manage the symptoms. My doctor had me discontinue use because of a rash and I am not on day 11, I have a slight rash on my arm. My MM specialist recommends lowering the dose but my local doctor wants me to discontinue the drug. There is a definite difference in approach by the two doctors.

@tally9004, skin rash is common with Revlimid (lenalidomide) therapy and usually resolves within 2 to 3 weeks. For mild rash, treatment isn't usually interrupted. But severe rash may need attention. https://www.medicalnewstoday.com/articles/drugs-revlimid-side-effects#specifics

When doctors' advice differ, it is hard to know what to do. Did you lower the dose, Tally? How are you doing now?

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.

@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