thalidomide and neuropathy

[andrew]

Greetings from the UK. My mother has MDS 5q- (diagnosed 18 months ago)- she wa prescribed thalidomide 50 mgs and had an instant positive reaction with her haemoglobin going from a low of 7.7 to 13.6. Four months ago she complained of numbness in the back of her foot and pins and needles in her hand and her dosage was reduced to 25mgs. Her blood counts remaims at 13.6 but she has mild neuropathy in the same extremities – her doctor has told her to stay on the thalidonide because if she comes off she wil probabaly have to have regular txs – is this normal, will it get better etc

[patti]

Hi Andrew,

I did some research when my MIL was considering thalidomide and one of the side effects is neuropathy. Other then talking to her doctor about it I’m not sure there is anything they can do. You might do a web search on “side effects of thalidomide” to see what they say about how long it will last. I can’t remember because it’s been so long since I looked it up. I don’t know if the effects can become permanent after a long time of having it or not but I do remember the information was out there when I did a search.

Best Wishes,

Patti

[Neil]

Hi Andrew,
You might ask her doc if she can switch to Revlimid.
It is an analog of Thalidomide. The components that cause side effects such as neuropathy have been removed.

[Chiparoo]

Andrew,

I was on Thalidomide for only a month. I suffered from extreme bone pain, anemia, and severe neuropathy. In fact, the “pins and needles” were so bad, my oncologist thought I’d had a stroke. Fortunately, after a CT scan, he found that I’d not had a stroke, but the neuropathy lasted over a year and a half after I was off the drug!

I’m in agreement with Neil – see if you can get on the Revlimid. After my experience with Thalidomide, I almost wish they wouldn’t recommend it for our ailment.

Good luck,

Chip

——————–
48, Dx w/ RARS April 03. Long arm of chromosome #20 missing. On B6. Unsuccessful month w/Thalidomide (severe neuropathy) Jan 04. RAEB w/multilineage dysplasia discovered after 4th BMB in Aug 05. Currently on Vidaza, weekly Procrit and Neupogen.

[Carl]

I have taken Thalidomide in differing dosages over a period starting Feb. 2004. I got off of it in December 2004 because of the neuropathy and in hopes that Celegene would get the Revlimid approved for general use. I had to get back on it in February 2005 and have had increasing problems with the neuropathy and an increase in the number of txfusions. My experience is that the numbness/tingling does not get better and to keep the red cell count up the Dr.s have to increase the dosage which in turn increases the neuropathy.

I am impatiently waiting for the Revlimid to be approved, now scheduled for early January 2006.

[andrew]

Thanks for your helpful messages – when you say that revlimid is going to be approved in Jan 2006 – do you mean that all the preliminary stufff has been done and that it is a question of signing it off – or are the more tests etc?

[Carl]

The following is from Celegene’s (maker of Thalidomide and Revlimid) web site:

REVLIMID(R) PDUFA Date Extended Three Months By FDA

SUMMIT, N.J., Oct. 3 /PRNewswire-FirstCall/ — Celgene Corporation (Nasdaq: CELG) announced today that they received notification late Friday from the United States Food and Drug Administration (FDA) that the action date for FDA’s priority review of the New Drug Application (NDA) for REVLIMID (lenalidomide), for the treatment of patients with transfusion-dependent anemia due to low- or intermediate-1-risk myelodysplastic syndromes (MDS) associated with a deletion 5q cytogenetic abnormality with or without additional cytogenetic abnormalities, has been extended to January 7, 2006. The original action date under the Prescription Drug User Fee Act (PDUFA) for the REVLIMID NDA was October 7, 2005.

The extension is a result of the FDA requiring more time to review additional information on Celgene’s RevAssist(R) risk-management program. This additional material has been considered by the FDA to be a major amendment to the REVLIMID NDA allowing the extension of the action date under PDUFA regulations.

“We are working closely with the FDA to enable completion of their review as quickly as possible for REVLIMID approval” said Sol Barer, Ph.D., President and Chief Operating Officer of Celgene Corporation. “We will be ready for immediate commercial launch upon FDA action, and expect a November submission of our REVLIMID application for treatment of previously-treated patients with relapsed or refractory multiple myeloma.”

[Jimbob]

I had extreme periphial neuropathy after my SCT. I did not have thalidomide. Other drugs can also effect the nerves and the effects, I have been told, can be dramatically increased if one has radiation therapy. I have been getting physical therapy from a DO trained in Jones Strain Counterstrain method and also taking Gabatril to get back full use. Hands are much better and feet are getting better.

[Author]

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