[jbalParticipant]

Hubby had SCT in Sept 21 and achieved a reasonable response. Got PP’s down from 56 to 4.2.
Started Lenalidamide a week before Xmas and 10 days in had an extensive skin reaction and this has now had to stop.

Hugely disappointed that he can’t continue as we know that maintenance can extend remission times.

Anyone had a similar experience? We’ve asked if he can have a break and start again on a lower dose but been told that if this is an allergic reaction then it’s not dose dependent and won’t make any difference.

[shropshiremumParticipant]

Hi there.

I had my SCT in July 21. I’m now on my third cycle of lenalidamide, 7.5mg dose, due to kidney damage. I had an allergic reaction where my head, neck and ears got very hot and itchy. I started on antihistamines, which keeps it under control.
You don’t say what kind of reaction your husband had, but were antihistamines an option?

I hope you find a solution.

Susan

[mulberryParticipant]

I used lenalidomide during induction treatment and early on had a fairly widespread and alarming rash in my torso. My consultant gave me an extra week between cycles but was confident that it would go, which it gradually did (although it took about a month to go completely). I continued on lenalidomide and it didn’t come back. I’ve been on low dose lenalidomide maintenance since SCT 3 years ago. I had to reduce the dosage due to low white blood cell counts, but not because of skin rash.

[jbalParticipant]

Thank you both
The rash started out like prickly heat on his back and then developed into very dry skin on his face which then progressed to red and itchy patches which became raised and looked a lot like exczema. At this point we decided to stop taking the Lenalidamide and wait to speak to the Consultant. Maybe if we reported it sooner and he started on antihistamines and/or the dosage was lowered at the prickly heat stage it may not have progressed further?

The Consultant has advised to permanently discontinue the treatment without considering altering the dose and looking at supportive treatments such as antihistamines which is hugely disappointing. We will discuss this with her again in 8 weeks and may consider asking for a second opinion.

Knowing that you both had reactions to the Lenalidamide and these were resolved is encouraging – thank you.
Jane

[shropshiremumParticipant]

Hello again.

I’ve also had dry skin, although it’s not too bad at the moment.

Another thing that occurred to me, is he on co-trimoxazole? Although I’d taken it before my SCT, I had a reaction to it once I started lenalidamide. Again, red itchy patches. One of my nurses said it’s very common, and to stop taking it (she described it as a ‘belt and braces’ approach, and not essential).

Was he on this too?

Susan

[jbalParticipant]

Aaah that’s interesting. He started on co-trimoxazole on Induction and had a similar reaction and was switched to Dapsone which he took during Induction and for 100 days post transplant Transplant and tolerated this well.

He stopped taking any prophylactic meds, just the Lenalidamide with aspirin.

Would be interested in any other experiences with Lenalidamide.

Thank you.

[maidmarionParticipant]

This is where having a forum really helps. My husband has just started Lenalidomide (10mg) maintenance on Friday, five days ago. On the third day he complained that his head was incredibly itchy and kept waking him up, it’s become very dry and flaky. Based on what you have all said, I’ll contact the hospital and see if there is anything I can give him or a special shampoo maybe that might help. Thank you guys!

[shropshiremumParticipant]

Hello

I had this too! It was really, really annoying! A hot itchy scalp that drove me to distraction! But I’m now on antihistamines, and don’t get it at all. I’d suggest if you have some at home, give them a try (although probably phone his CNS first). I take loratadine…
Susan

[maidmarionParticipant]

Thanks Susan, I’ll contact the hospital and have a word, just to be on the safe side, but that’s really helpful. Appreciate the advice.

[maidmarionParticipant]

Hi guys! Thank you so much for your advice about antihistamines, hubby has had them for three days and itching is substantially improved. I also bought him some Aveeno sensitive shampoo, which doesn’t contain parabens (think that’s the right word) and that also seems to have helped. Apart from feeling even more tired he’s not had any more side effects from Lenalidomide, so fingers crossed 🤞

[lilibParticipant]

Hi everyone. My husband is on Lenalidamide as part of his second type of induction treatment. Originally he was on VTD, and the Thalidomide caused exactly the reactions that you describe. Terrible all-over itchy rash. I think the hospital pharmacy gave him some creams and shampoo (sorry, I cannot remember the names), and he was advised to stop the VTD. After a pause of a month, he started a different treatment, and we were warned that Lenalidomide might cause the same reaction as it is a similar type of drug to Thalidomide, but – so far, no problems.

It’s fascinating how different bodies can tolerate different drugs. I am now wondering if my husband will continue with Lenalidamide after his SCT. Something to ask next time we are in the hospital.

[maidmarionParticipant]

Interesting indeed Lili as my husband was on VTD for his six cycles prior to SCT and he had a rash over his chest but managed to tolerate and finished the treatment, it was the dexamethasone that caused him the most problems and I was so pleased when he came off them. It’s reassuring when you read the reactions from everyone and realise it’s pretty ‘normal’. Hope your husband’s SCT goes well, where is it due to take place? My husband had his at The Churchill Hospital, Oxford, they were fantastic and looked after him so well. Just as a thought, you might want to make sure he does go on to have maintenance Lenalidomide treatment three months after, my husband wasn’t given it (an error by the Consultant) and only went on six months later. It was worrying, but we’ve been reassured his paraprotein levels are still unquantifiable, so all good.

[ree2112Participant]

Back at the beginning of my treatment, I was on VTD and couldn’t stop itching. A neighbour suggested an antihistamines and it work. When I started on Lenilidomide the same happened again so I was back on them. Just supermarket tablets worked brilliant for me.

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