Hi
I first experienced PN during maintenance treatment with Thalidomide following my first SCT. I ignored the first effects which were just a slight tingling in my feet, especially my toes, but when it started to affect my hands I asked to be taken of the Thalidomide and my Haematologist agreed. The tingling in my toes never completely went away but my hands were no longer affected.
Prior to my second SCT I went on the Velcade/Dex/doxorubicin course of treatment and the tingling started up again and my feet became quite painful, my toes were especially stiff and uncomfortable. This gradually subsided and now ten months post SCT has noticeably improved but has not completely gone away. The most noticeable improvement recently has been since I was prescribed Gabapentin, 300mg three times daily, to cope with the pain of shingles. This drug is used for "long lasting pain caused by damage to the nerves" as well as for epilepsy and has made a huge difference. I was able to stop taking the high dose co-codamol immediately so I will ask if I can stay on it to stop the PN. I don't know whether it would prevent PN or can only be used once it is present but it may be worth asking your doctors opinion.
Best wishes,
Love Nettie
