I have Myeloma and had Stem Cell Treatment in May 24. I started taking Lenalidomide early 2025 for my maintenance chemo as well as receiving a series of vaccinations around the same time.
I developed a sever itching and extremely red skin all over my body (as if I had been caught in the desert naked) which became unbearable. I was told to take antihistamines which didn’t seem to work and eventually was given steroids which did reduce the redness to pink and reduced the constant itching all over.
I was eventually told to stop taking lenalidomide around March/April but I am still pink all over and my eyes are sore and my face still itchy. I also continued to have spots/sores come up around my head, face and neck.
I have eaten antihistamines all year until last month without the pinkness reducing (going out in the sun I need to be covered up). I still have spots and sores around my head and shoulders and even itching in my ears and my eyes are uncomfortable all the time.
Has anyone else experienced this and if so do they know what caused it (lenalidomide/vaccinations/anything else) and what can be done about it.
I am still not taking my maintenance lenalidomide so why has my condition not got any better. No one seems to know what to do.
I’m really sorry the itching is dragging on like this, it sounds tortuous. Though not exactly the same, I remember how it felt when I epxperienced the ‘lymphoma itch’, and how unbearable it was.
I will leave it to other forum commuity members to share their personal experiences, but wanted to pop in to offer some more general advice, in case it’s useful.
Firstly, has your team ever referred you to dermatology? And have they actually seen the rash or the areas that are still pink/itchy/sore? Sometimes a fresh pair of eyes (quite literally) can be helpful. And since antihistamines and steroids haven’t shifted things and you’re still so uncomfortable, you are absolutely entitled to push back and ask for a more thorough review.
In the meantime, some people here have found that practical comfort measures take the edge off while things are being investigated, and those (as well as other itching info/advice) can be found on our Blood Cancer UK webpage about itching.
If you’d like to talk it through with someone first, our Blood Cancer UK Support Line nurses are brilliant at helping people work out what to ask for from your medical team. You can contact them on 0808 2080 888.
And just in case you haven’t spotted it, the ‘Related Topics’ section at the bottom of this page can be a good way to find other conversations on similar issues - sometimes it surfaces threads you might not come across otherwise.
Do let us know how you get on, as you shouldn’t have to sit with this level of discomfort without proper support.
I am pink all over with itchy face, head and upper torso and especially the eyes. I keep having spots/sores coming up. I was eating all sorts of anti histamines for five months and not taking any chemo drugs after being taken off them.
I have been referred Kings in London for patch testing but yet to hear from them for an appointment. Do you know of any other Myeloma sufferers who are or who have suffered the same symptoms?