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

Posted by packgb19 @packgb19, Jan 16, 2020

Today I took my 1st pill 20 Mg., please share your thoughts and how its working for you my friends.
Patrick from IL

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millicentw | @millicentw | Feb 13 6:31pm
In reply to @gingerw "@tally9004 Yes, when we get two differing opinions we need to seriously consider what is being..." + (show)
@gingerw

@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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Hi, Ginger. I'm trying to figure out if Revlimid is responsible for my flaky skin. It doesn't appear to be a rash but I seem to be "peeling" (dry skin) mostly lower legs. I do take vitamin E 180 mg (400 IU) daily. Maybe I'll try the cream as well.

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Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 13 9:01pm
In reply to @millicentw "Hi, Ginger. I'm trying to figure out if Revlimid is responsible for my flaky skin. It..." + (show)
@millicentw

Hi, Ginger. I'm trying to figure out if Revlimid is responsible for my flaky skin. It doesn't appear to be a rash but I seem to be "peeling" (dry skin) mostly lower legs. I do take vitamin E 180 mg (400 IU) daily. Maybe I'll try the cream as well.

Jump to this post

@millicentw Definitely, I would try to use a nice heavy cream that works for you. Or if you want to use a lotion that would be a good thing, too. Also take a look at the soap you are using, and if your water is hard. Our bodies go through so much when we're on Revlimid! Besides being good to ourselves and getting that lotion on, it is a gift that we do just for us!
Ginger

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itlooksunny | @itlooksunny | Feb 16 8:21pm

My husband took revlimid and had no side effects but I was scared to death with all the side effects I had to be aware of! I slept on an air mattress so I could be near him in case something happened (we live in a 1911 house with bathroom & bedrooms on second floor)

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5qdeletion | @5qdeletion | Feb 24 2:37pm

This message is in response to the Revlimid (Lenalidomide) rash discussion. After two years on Procrit/Retacrit "Filgrastim" failed, my husband was prescribed Revlimid for MDS 5q deletion at the 10mg "normal" dose; MWF 21 days on, then 7 days off. He soon developed welts, worst were on his torso and arms so the oncologist terminated Revlimid. A couple years later, after Vidaza (Azacitidine) failed, his new oncologist said let's try Revlimid again at a lower dose, and with a "cocktail" to curtail the rash.

At 1/4 that normal dose of Revlimid MWF 21 days on, then 7 days off... adding a "cocktail" of one L-Lysine tablet, one original Claritin tablet and two Pepcid tablets, taken with each Revlimid capsule.... there was no rash at all. And because there's no downside to the cocktail, and there's upside for his sinus issues and GERD, this was a total win.

He was successfully on Revlimid with good numbers for Hgb, Platelets, ANC, and WBC for two years, then terminated Revlimid again because the oncologist said it was negatively impacting his CKD which was then at Stage 3/4.

Now he's back on weekly injections of Retacrit/Procrit along with Nivestym (Filgrastim) for white cell count.

Every case is different, but this may be worth discussion with a hematologist or oncologist.

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