[cheshkParticipant]

Hi,
My mum is currently taking Lenalidomide as a maintenance drug which she started in March. In April she started to collapse/pass out at least once a month (although no pattern to the time of the month) hospital admissions put this down to low blood pressure. She has also suffered badly over the last few months with a rash/skin infection which inflames her skin and eventually peels off. This is extremely itchy. We started to look into what could be causing this and we actually found that she has had 13 of the possible side effects to Lenalidomide since she started taking it.

She had an appointment with her consultant who advised that there was no alternative to this drug for first line treatment. The option is to try a lower dose or choose not to have maintenance drugs.

She has been off the drugs for around 3 weeks and is already like a different person (although still chronically itching!) and her next appointment is in a months time where she will be given a lower dose to try.

I wondered if anyone else had suffered a lot of side effects using this drug and what course of action was taken?

[tony642Moderator]

I am on a maintenance dose of Lenolidamide (10mg daily) but suffer very few side effects, so maybe a reduced dosage might work, worth giving it a try if there is no alternative.

[victortankerParticipant]

Has your Mum tried taking anti histamines
They work for me

[blobgobParticipant]

I had a red rash all over my torso, spreading to my upper thighs and behind my knees, when I first started taking Lenalidomide.

The first three weeks taking the drug were fine, then I had my planned week off.

I then started a daily 10 mg regime again, but this time the rash appeared. I was advised to come off Lenalidomide.

At my scheduled consultant haematologist appointment three weeks later, when the rash had cleared up, we both agreed I would try starting again with Lenalidomide. That was over 2 years ago and I have been fine since taking 10mg Lenalidomide 3 weeks on, 1 week off. 10mg tablet.

I was off Lenalidomide for 23 days.

[Author]

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