[nick123Participant]

Does anyone have suggestions for something that has worked for them to relieve itchy skin, redness, blotchiness etc etc. Not painful but irritating! I moisturise and sometimes take antihistamine. Things to avoid as well? Thanks, Nick’s

[btuParticipant]

I used cool shower. Keeping my back (where most of the hives are) cool also helps.

[pamParticipant]

Im also having problems with lenolidomide. First 8 months was fine then developed an itchy scalp. Now taking antihistamines which have helped. I was taken off it in April and then it gradually was stepped up. Felt normal for a a couple of months. However this is half way through cycle at normal dose (10 mg) and i feel awful – exhausted, bit dizzy, just unwell. Im trying to carry on as normal but the days have been a bit of a struggle since i went on to 10 mg/ day again. I really dont want to come off it or even reduce it. Anyone else out there with similar experiences?

[nick123Participant]

I am still early days and have just finished my second cycle. My itchiness has reduced with antihistamines and regular moisturising my dry skin – E 45 was v good and I probably dont need it any more and just use something cheaper.

I do get irritable, with brain fog and find it harder to make decisions. Fatigue does come and go – sometimes I will literally crash out, either in the morning or afternoon – somethings for 10 mins or 90. My legs and arms can feel weak. That said all of this does come and go. And when I am having my 7 days off at the end of the cycle and I better, stronger and less fatigued.

No real pattern, yet, and each day is not predictable. Some days are fine and I do wonder what contribution my mental state makes to my physical (mentally up and down). It is hard, but I find gentle exercise helpful mentally and physically.

When things are bad it is easy for them to get on top of you.

All I can say is to be kind to yourself, make sure everyone knows you are not back to normal and recognise that even these maintenance drugs have a real, not imagined impact. If you are feeling bad then try to accept it, rest and push through it and then make the most of those days when you feel better and stronger. Sorry not to be more helpful. If you can find a way to adapt to the new normal then I would absolutely agree that staying on the treatment is best. Nick

[pamParticipant]

Thanks Nick. That was helpful. I am usually really active with exercise, walking etc . Youve got it spot on with the mental and physical thing. When im feeling good physically , mood is great and when im struggling i sink mentally. I dont do relaxation well … Adapting to the new normal is challenging. Your message helped so thanks for that. Always reassuring to know im not alone in this. All the best to you too. Hope the itch stays away. I got some aveena sensitive shampoo. Also got some aloe vera gel for my neck which was soothing. All the best to you.

[jiffieParticipant]

Hi, I had this problem and it was really bad, my scalp felt like it was on fire and I had a lot of patches and blotches all over my body, which were painful. I ended up applying vast amounts of cream on my scalp, which helped for a while but eventually it became unbearable. I made the difficult decision to stop taking it, quality of life vs length of life sort of thing.

The Consultant I had at the time was not pleased with my decision and seemed to lose interest in my well being. He was replaced by a new Consultant who I got on much better with, he told me this was a common problem and affected people differently. He told me that in the end it doesn’t make an awful lot of difference to the end date.

Good that others have found solutions to this problem, unfortunately it was too severe for me.

Still in remission 3 years after my SCT, so fingers crossed.

I read in the New York Times that they have found a cure for MM and are currently undergoing trials which have proved very positive. I’ll open a new thread in Treatments with links to this, sounds really hopeful.

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