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Skin reactions and Imatinib

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I was diagnosed with CML just over a year ago. About 3 months later, I developed extremely itchy, unpleasant rashes below my neck and on my arms.  I had never experienced anything like it and was quite distressed. I contacted my consultant via the specialist nurse to see if it might be connected to the imatinib and the answer came back that he thought there was no  connection.  Luckily a sympathetic GP helped me out. Because of the areas effected I suspected it was sun related, although I had no been overly exposed and came to this forum for information and discovered that there was indeed a connection in something like 37% of CML sufferers. 

A week ago when in the garden, I felt a sharp sting on my thigh. I could see no entry point for an insect when I looked.  An area the size of a side plate then became covered by a rash and has been though phases of extreme itchiness. Yesterday, I went to the walk in centre to have it checked out (especially thinking of  ticks and Lyme's disease) they were not too worried but said I should return in a couple of days if it continued growing - which it has in parts.  Now, thinking about it, it is very similar to last year's problem.  I am wondering if my skin has become over sensitive.

Has anyone had similar experiences?

Patricia K

Hi Patricia,

It is widely recognised that imatinib can and does cause skin rash and skin toxicity in some people. Your clinician should recognise this and needs to be more pro-active in treating this as a side effect of imatinib.

From a quick search (imatinib and skin toxicity/rash) you will find quite a few publications citing this as a side effect of imatinib therapy and can be treated with either discontinuation for a short time with use of a topical steroid to see if this solves this particular side effect.

If on resuming therapy the rash comes back then it might be that you are intolerant of this particular TKI, in which case you could be offered a different TKI such as dasatinib, nilotinib, bosutinib etc. 

Is your clinician a specialist in CML? If not you may need a second opinion.

Sandy

Hi Patricia ,I too had a really bad very itch red bumpy rash on neck ,chest area and over my shoulders ,it used to drive me mad and was worse in hot weather .I didn't want to go the steroid cream road so I tried a simple vitamin E cream and a vitamin E moisturising spray .I could spray this on my back as I couldn't reach to rub cream in.Not sure if you are in the UK but it was Superdrug's own brand and it worked a treat.When I changed to Dasatinib the rash and bumps along with the hooded eyelids completely cleared up within days ,it was amazing .So yes it is definitely Imatinib that is causing it .Good Luck .Denise.

That is really helpful Denise, thank you.  I shall buy some of the cream and spray from Superdrug.  The itching has been awful, hopefully this should help. All the best. Paricia

Sandy, thank you for this.  My consultant is not a specialist in CML and is very overworked at present.  With telephone consultations it is obviously not as good as seeing the patient and  the rash itself. Once we are a bit freer, I had thought of going to London for a second opinion.  There are no listed specialist centres in this area.  I am in the South West.  Patricia

Hi, o good you can get to Superdrug.I bought the Vitamin E intensive all over body cream it's in a big pot and the hydrating mist ,kept one of these in the fridge .Great to cool the rash down and when it's itchy .Hope they help certainly did for me .Regards ,Denise.