[Jmcrowe]

Re: Persistent peripheral neuropathy from Velcade

by Jmcrowe on Fri Feb 12, 2016 8:29 pm

Back in early 2014, I took a long course of an antibiotic called Bactrim. About halfway through the course, I started feeling numbness in my left arm, I didn't really think too much of it. So stupidly, I kept taking it. Then a little while later my entire body was numb, tingly, and weak. I was diagnosed with a toxic polyneuropathy.

I remember scouring forums like this one and constantly being demoralized by the responses. People were always sharing bleak outcomes. Which my guess is because people with good outcomes don't normally stick around on forums to talk about it. They quit thinking about it and enjoy their life.

Which is what I did until today when I though about it. So I just wanted to mention that my neuropathy was terrible for the first few months. I could barely even leave the house because I was weak and light headed so much. But after the first couple of months, I started noticing minor improvements. Then, a little less than a year after, I started having rapid improvements. And now I am almost entirely symptom free. Every now and then I get a minor flare up for a couple days (slight numbness) but nothing that alters my quality of life. I barely notice it.

But anyways, I just wanted to come on here and give everyone some hope. I understand how scary and hopeless this condition can feel, but there are many cases, including mine, that end up clearing up entirely. So it's good to stay hopeful.

P.S. During my recovery, I quit drinking and smoking, started eating healthy and exercising a lot (particularly running). Although I'm not sure if this had anything to do with the recovery process.

Good vibes.

[Melpen]

Re: Persistent peripheral neuropathy from Velcade

by Melpen on Sun Feb 14, 2016 6:46 pm

Thanks for the encouragement, Jmcrowe, because some days the neuropathy is so bad – mine is a crushing, squeezing sensation in forearms – I wonder if it's worth battling anymore. If I can hold in my head the possibility or promise that the neuropathy WILL be gone someday, then I can soldier on to that pain free tomorrow.

Can the new IMIDS (Revlimid, Pomalyst) cause permanent neuropathy in some people like thalidomide did?

Or do nerves always begin to regenerate once the offending agent is removed?

Can nerves regenerate as fast as 1 inch per month?

[Tom74]

Re: Persistent peripheral neuropathy from Velcade

by Tom74 on Mon Feb 15, 2016 2:07 pm

95% of my pain is from peripheral neuropathy. It is across my chest, under my arms, hands and feet. Tried all the pain killers but nothing will relieve the pain. I too hope time will help with the pain. Until then, I at times go minute to minute.

Tom74