In remission, neuropathy and reducing Lenolidomide

Hi. Bunky.  Kevin here. AKA. Vespa   I am in a similar situation.  I was on 10 . Mg.   Lenolidamide also until about 5 months ago.    My main problem was skin rash and itching. Very severe.  Also neuropathy still bad but comes and goes.   He moved me to 4 mg  Lenolidamide on e 21 day cycle.    I had the same concerns as you.   Do t want to give the MM.  chance to come back    I have good blood results tested every month but only see consult and now every 2 months     Mrash itching as gone and so far still in Remission    I trust their knowledge and experience and I am sure they share the patient experiences with other health care professionals.     Like you I am 15 months post stem cell      I know there are other lines of treatment if and when it comes back.       I hope this helps a bit     ?   Do you take anything for the neuropathy?   I take. Pregabalin   It helps a bit.  I feel good in the morning but it gets worse in the evening!    Kevin 

Hi Kevin,, thank you for your reply. I'm glad your itching etc has gone hopefully for  good. I've not had that, it's just the neuropathy.   And like you,bit seems worse at night. I do take Pregablin too, 300 mgs in the morning and 300 mgs at night.  Its a high dose and I'm not sure whether it works or not because my neuropathy has been the same since my chemo stopped a year last November.   I too have bloods every month  and see my consultant every 2 months like you,  so I will wait until  I go to my next appointment in 7 weeks and take it from there! I can't believe how alike our journey has been so far!  I will stay positive as always and hope we have many more years of good health!  Thank you again.  Take care

I was also on 10mg lenalidomide. I didn't have neuropathy but I was getting daily diarrhoea and fatigue so bad that it was affecting my quality of life.

I proposed to my doctor that I could cope with it in the short term but that a reduced dose could be considered at some stage. He said that he would rather prescribe 5mg instead of 10mg straight away.

That was in December 2024. Still going strong with 5mg and my problems are much better.

Hi, I'm glad your symptoms are better.  I will just have to trust my medical professionals and try not to dwell on worrying about my MM returning.  Take care and stay well.  

Bunky said:

neuropathy

Hi Bunky , l hope you don’t mind me replying to your post , l was diagnosed with multiple myeloma in dec 23 and also on a trial , l had my stem cell transplant in June 24  and now have a transfusion every 2 weeks ( couldn’t tell you the name of the drug ) and 10mg of lenolidomide very 21 days for then break of 7 days ,lm on cycle8 now and in remission, l do get strange cramps in my toes ,feet but it doesn’t last very long but dose seem to be getting slightly worse , lm also told by the amazing trials team that when/ if the myeloma returns there’s plenty of alternative treatments/ drugs that can be used ! But l hope this is many year down the road , if you don’t ,me asking when did you tart to gets neuropathy in your legs , l see my consultant every 3 months and he is also great and is always positive about the future ,the trials team have offered to reduce the dosage down to 5 mg if l find the cramps un-manageable , l find it helps very much to talk , ps sorry for the time l posted this s l can’t seem on Fridays when l have the treatment ,

thanks Mandysbloke