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Uncomfortably tingling feet and hands

Hi everyone

I know some of you have suffered from tingling on the soles of the feet and palms of the hands while taking Imatanib 400. I have been taking Imatinib since Sept 2009 when I was diagnosed and in the past month I have been experiencing this tingling which feels like pins and needles . I get this all the time except when I am swimming. I've tried barefeet, sitting with my feet up but to no avail. It happens during the day and in bed at night.
Does anyone have a remedy which has worked for them?
Best wishes
Chrissie

Hi Chrissie

Sorry to hear that you are suffering with pins and needles. I suffered very badly with this whilst I was on both glivec and dasatanib. Not only did I have pins and needles in my hands and feet I also had it all over my body at one stage. It was most unpleasant.

I also had a very funny feeling on my skin, sort of like a hot flash, very difficult to describe. Used to be there for quite a while coming and going every few minutes then it would go away then reappear. Most peculiar.

At the time I was on glivec pins and needles was not an oft reported side effect and it was a new side effect for my specialist. It seems to be more frequent nowdays.

There wasn't anything that helped me except coming off the TKI's!

I would be interested to hear how you get on, wishing you all the best

Susan
www.caringbridge.org/visit/susanleigh

Hi Susan

Thank you for your reply. I had a call from the hospital today to tell me I have an appt at the Electrophysiology Dept (whatever that is)to have a look at my feet. Goodness knows what they'll see as they look normal !! They have also offered me Botox into my tear glands to stop my eyes streaming. Don't much like the sound of that but I'll go and see what the doc says. My inclination is just to go with the flow without taking any more medication but my specialist obviously takes side effects seriously so I should be grateful. In the grand scheme of things, I consider these side effects are just a minor irritation.
Best wishes
Chrissie

Hi Chrissie

Electrophysiology tests are to do with nerve conduction tests, ie see how well the nerves are working. The reason for doing these tests is that rarely pins and needles can be assosciated with other problems. I guess that the consultant wants to rule out any other possibility for the pins and needles. Sounds sensible.

I hope the tests go well and that the botox works for your watery eyes. Keep in touch

regards
Susan

Have now had my appt to have my nerve endings checked and, of course, the pins and needles had more or less stopped by the time the appt came through. All seems OK according to technician.

Also had my appt with eye specialist re my watering eyes and constant running nose when eating. Told him the symptoms have got much better since stopping statins so we decided I'd be spared Botox into my tear gland.

Nice to know they are checking out the weird side effects, although I feel I'm wasting doctors' time!

Had to laugh at the Irn Bru and Ecstasy research. Wonderful if they work as NICE wouldn't feature!

regards to all

Chrissie