[redlinehighParticipant]

HI Ree,
Thanks so much for your reply,its interesting you fell the same way!
I don’t know what you mean by c.n.s. but I have spoken to my consultant and my doctor and they doesn’t seem to know where to go!!
Many thanks

[redlinehighParticipant]

Hi Rachealj
I was just wondering if you have had any small side affects, such as dizziness or periphal neuropathy while taking you have been on the maintenance lenalidomide??
Thanks

[redlinehighParticipant]

Thanks for your help, jut trying to get my head around it all!

[redlinehighParticipant]

Hi Rachel,
Thanks for your email, nice to hear your story and glad you are getting sorted after your stem cell transplant!
Can I ask why you take your meds at 9pm, is this a recommended time??
Many thanks

[redlinehighParticipant]

Hi Finn,
Thanks very much for your detailed account of your life on lenlidamide!
Interesting the you had side effects as all I hear is that patients don’t get any!
Glad you are living life to the full, as its reassuring that this is possible taking this drug!
Happy new year to everyone!!

[redlinehighParticipant]

OK thats great to know thanks! How long
Is what you call a cycle?

[redlinehighParticipant]

Have you had many side effects from the lenalidomide ?

[redlinehighParticipant]

Hi There, thats great news to hear, can I ask, did you start off on 10 mg from the offset and was that what your consultant decided?
Thanks

[redlinehighParticipant]

Do you find the treatment disrupts your sleep at all, cause you e.mailed very early in the morning?

[redlinehighParticipant]

Hi Mulberry,
Thanks for your email and such detailed information, as its really helpful, as the consultant wanted to start me on 25mg which seems so high and the same dose as I was on chemo !
I have been asked to go on the dexamethasone as well which i don’t want to do at all as the steriods made me a horrible person!
There seems such varied way the doses are prescribed which doesn’t help 🤔

On your email you said wbc?
Can u explain what this please?
Many thanks

[redlinehighParticipant]

Opps, sorry ment Rivaroxaban as the blood thinning drug, sorry got confused!!

[redlinehighParticipant]

Hi All,
I had my first s.c.t. 9th September and I am being put on the lenalidomide maintenance drug and just wanted to ask what people had found to be the side effects long term?
Also i was asked to take the steroid dexamone with it but i found when i took this last time it made me an angry person and i hated it as felt i wasnt in control of my actions, which is not good!!
so was gonna just take 15mg every day with the aciclavor blood thining tablet as normal, any had any experience just taking the lenlidomide?
many thanks for any replies!!

[Author]

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