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When Taking A Break From Revlimid

A MyMyelomaTeam Member asked a question 💭
Phoenix, AZ

Every time I take a break from revlimid about two weeks after stopping I get sick. Light headed, nausea and extra tired. Have to stay in bed a couple days. Any one else experience this?

August 7
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A MyMyelomaTeam Member

thanks for this question Jeff. I started 10 mg. daily of Revlimid two months after my SCT. I was wondering if I could get off while I enjoy a vacation I have planned for December. So it is good to know you can go off it periodically. Currently I have fatigue, body aches, numb hands and feet and worst thing is my taste buds are still funky. so my appetite is low. I haven't heard anyone talk about taste buds, but I am hoping it is still from the intense chemo back in Feb. and not the Revlimid. they say tastebuds take the longest to recover after SCT. anyway, sorry you are feeling so bad after getting off. I hope it passes soon! I really appreciate the question and all the comments as well. I learned a lot.

August 7
A MyMyelomaTeam Member

I haven’t had a break from Revlimid since I started taking it except when I had a stem cell transplant. I was off for 1 cycle only. No real size affects I could tell because I was recovering from the stem cell transplant which was hard.

August 13
A MyMyelomaTeam Member

Jeff,
I had gotten off revlamide 5 mg last week to get rid of shingles and got back on acylovir 400 mg one pill per day.

I noticed back pain increased so got back on revlamide 5 mg feel better on pain issue. Also took liposomal curcumin one huge tablespoon.

I noticed a side effect of dapsone is insomnia and increased anemia so plan to get off dapsone again.
I was having problems sleeping plus very cold hands feet weak and pale. I took geritol for more iron b-12 drops and multiple vitamin with iron.

I keep having sinus issues took Claritin helps with pain also plus 2 Quercetin, 2 vitamin c 1000 mg, Flonase nose drops, drank green tea, acacia berry tea saffron tea mixed with honey seems to help. Would love a delicious beef vegetable soup about now!

See Mark Parker’s video this morning excellent on dizziness can’t wait to try it too!!!

August 10
A MyMyelomaTeam Member

Jeff. I did not experince anything when I stopped my Revlamid except my creatinine number went to Normal for the first time in years. Additionally I noticed while on Revlamid for several years I got no mosquito bites. Now that Im off Mosquito love me ! Sorry to hear you are having effects when stopping. Stay well my friend.

August 7
A MyMyelomaTeam Member

Jeff, I don't have the level of experience of other respondents but my doctor took me off revilimid last week when I had an allergic reaction. This week, I have been very fatigued with stormy issues. I see my oncologist on Friday to see where I go from here.

August 7

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