[tm648]

Is Velcade-induced peripheral neuropathy painful?

by tm648 on Sun May 17, 2015 2:33 pm

My oncologist is considering switching me from Revlimid to Velcade because I developed a rash while on Revlimid and he is afraid I might get Stevens-Johnson Syndrome if I stay on Revlimid.

I have had peripheral neuropathy for a number of years (the reason my oncologist put me on Revlimid in the first place instead of Velcade), the type where I have foot drop and lack of balance but no pain.

I know that if I go on Velcade, the chances are that my peripheral neuropathy will worsen. My question is whether Velcade-induced peripheral neuropathy is accompanied by pain or whether it is more like the type I have now.

Thanks in advance.

[JPC]

Re: Is Velcade-induced peripheral neuropathy painful?

by JPC on Sun May 17, 2015 7:44 pm

tm:

I am guessing that your question is basically impossible to answer in terms of a prediction, but keep in mind the following. Velcade subcutaneous (as opposed to infusion) has a lot lower PN. Also, although early, the new oral version of Velcade, ixazomib, has less PN than subcu Velcade. PN is very common with Velcade, however, it varies. I understand that most people get it, but some only mildly.

An interesting question that i have heard some docs discuss, is that the multiple myeloma itself causes PN, It is difficult to separate out exactly what is the cause of the PN. If you are prone to PN already, does Velcade make it more likely to occur, or make it worse? Impossible to predict, but you might get lucky.

Good luck

[Eric Hofacket]

Re: Is Velcade-induced peripheral neuropathy painful?

by Eric Hofacket on Mon May 18, 2015 10:42 am

Based on my experi­ence, it can. For neuropathic pain, I was taking Dilaudid (hydromorphone) and extended release morphine pain killers, and I also tried various other neurological drugs used for other purposes. They did not help much. My neuropathy pain was worse than most, though, and many do not get any neuropathy pain at all.

[mikeb]

Re: Is Velcade-induced peripheral neuropathy painful?

by mikeb on Mon May 18, 2015 11:38 pm

Hi tm648,

I think this is yet another place where there are many individual differences across patients.

I have peripheral neuropathy that my doctor and I think is mainly caused by Velcade. But, as JPC pointed out, the multiple myeloma may contribute some to it, and also melphalan from the SCT I had 2 years ago, and Revlimid that I've been on for maintenance since September 2013. All of those have been mentioned as being linked to peripheral neuropathy, but Velcade seems to be the biggest culprit.

In my case, I have experienced some pain, but it's been very strange pain. Like little electric shocks that happen in a part of my foot for a fraction of a second. Not hugely painful, but enough to be annoying and enough to wake me up when they happened.

The good news is that we were able to get rid of those electric shock pains by me taking Lyrica. Other good news is that I don't have any other pain, just numbness and some tingling. So my peripheral neuropathy is not nearly as bad as some people's, like Eric's.

Best wishes to you, and keep us posted on how you are doing.
Mike