Thalidomide and Numbness

[vanguardsheet]

Dear all

My dad has undergone a BMT for his MDS. His consultant has put him on thalidomide as it apparently helps in bone marrow engraftment. My dad has been on thalidomide for a nearly a year. He experiences numbness and feels sensations such as “pins pricking” in his fingers and toes.

Can anyone else share their experience with thalidomide? In particular, (a) would the numbness go off after prolonged usage, and (b) how the numbness is managed (eg, are there certain foods to eat/therapies to relieve it)? It would also be useful if you could share the length of time you were on it.

Thank you very much.

[Cherbear]

Hi,

I didn’t have a BMT, but I was on a clinical trial with thalidomide and arsenic for approximately 2 months this year. I did experience a little neuropathy in my fingers and toes, but it didn’t last long. When I started the trial I was told that it was a common side effect. Is your father’s doctor aware of this? The dosage might need to be adjusted.

I did have other side effects, including fluid build-up in the pleural cavity, which was debilitating and I was taken off the trial. I’m not sure which drug caused it. My blood counts plummeted as well. I was pretty sick and it took almost 3 months after being off the drugs before I started feeling better.

Hopefully the numbness can be lessened for you dad. My prayers are with you.

Cheryl

[Carl]

vanguardsheet,

I was on Thalidomde for a year and I have been off of the drug for about 10 months now. I developed neuropathy in my fingers and feet/lower legs gradually while on the drug and it increased over time. Since I have been off the drug the neuropathy in my fingers has improved some but not gone away. My feet and lower legs have not recovered hardly at all. The docs say that it may recover over time or the nerves may never recover. I have been trying Alpha Lipioc Acid to try to get the feeling back but I have really just started so the results are probably some time away.

[Author]

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