[FrancesParticipant]

Has anyone who’s been taking Revlimid long-term (6 or 7) years had side effects that they feel are getting worse? Tiredness and stomach upsets in my case. I’d be glad to hear from you.

[tw744Participant]

Hi Frances, I’m one of the Peer Volunteers for Myeloma UK and a myeloma patient.
I noticed your post and although it’s from a while back I thought I’d reply as I was on Revlimid for 8 years and recognise those symptoms! Are you still taking it?

[ptlelecParticipant]

Frances/tw744,
I am coming up to “my first birthday” and have been on Revlimid since last July.
I have serious questions about any drugs, but take on board professional advice. I have just taken a 3 week break in my course to check on side effects as I feel tiredness, along with other feelings/ailments being commonplace since starting this drug. I was feeling really good back last June before starting Revlimid. The big question is”do we need this drug for a longer remission?” I still felt tired, but then I consider how long does it take to get out of the system?
It is always hard to decide what to do as we are told “everyone is different”.
From what you have told us you have been taking this regularly for 6-7 years, where had you been getting this from, as from what I believe, it has only been prescribed and formally sanctioned by NICE in the last couple of years.

[FrancesParticipant]

I live in Wales and Wales has always prescribed it. Last year I had a two month ‘holiday’ to see if the stomach problems and tiredness might ease off, but they really didn’t; so I guess it stays in your system for some time. However, I know it works for me in keeping the cancer under control so I don’t want to move on to another drug.

[tw744Participant]

Hi ptlelec
Revlimid has been NICE approved on the NHS since 2009, but initially it had more restrictions on who could have it in terms of previous treatments etc. Over the years these restrictions have been relaxed and in 2019 it became available as a first line therapy. MUK news
After 9 cycles of CRD (Cyclophosphamide/Revlimid/Dex), I took Revlimid (Lenalidomide) on its own as maintenance for over 90 cycles before starting to relapse. I’ve been on other lines of treatment since.
During this time I had the tiredness and tummy trouble you describe. Revlimid is the next generation of Thalidomide and has some of it’s sedative qualities and most people get tired to some degree when taking it. However after a couple of years of almost constant jippy tummy my consultant put me onto some stuff called Cholestyramine (Questran), which calmed things down dramatically. Revlimid can cause malabsorption of bile acids and this irritates the bowels – Cholestyramine neutralises the acids, relieving the symptoms.
Maybe worth asking your doctor about this at your next meeting?
Unfortunately side effects come with the good effects of most treatments – whether or not to put up with them is a personal decision.

• This reply was modified 2 years, 9 months ago by  tw744.

[tw744Participant]

Hi Frances
Sorry, I meant to copy you in on my reply to ptlelec, particularly the bit about Cholestyramine. It certainly helped me with the Revlimid induced stomach problems.

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