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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Peripheral neuropathy

by Fred on Fri Mar 12, 2010 2:12 pm

Any suggestions about how to manage pain from peripheral neuropathy? Does it typically go away after discontinuation of thalidomide or Velcade?



Moderator's note: Peripheral neuropathy is a topic that has been discussed in many forum threads. If you click on this link, you will get a list of forum discussions related to neu­rop­athy. The link is one of many included in the "Useful links to existing forum discussions" post that is pinned to the top of the "Treatments & Side Effects" section of the forum. Please check out that post when you have a chance.

Fred

Re: Peripheral neuropathy

by sally moyer on Fri Mar 12, 2010 2:17 pm

Massaging your hands or feet can really help. See if your wife would massage them for you. Besides helping with the PN, it's just nice and relaxing to receive a massage and can be a much needed break from the stress of myeloma.

sally moyer

Re: Peripheral neuropathy

by sylvia on Fri Mar 12, 2010 2:27 pm

Some people say that Lyrica or Cymbalta work. Anyone have any experiences with those? Do these drugs have their own side effects?

sylvia

Re: Peripheral neuropathy

by Ricardo on Fri Mar 12, 2010 3:54 pm

Well, one "side effect" of Cymbalta is that it will make you happier ... :shock: One of its officially approved uses is as an antdepressant. You can read more about the medication here, which is the FDA's officially approved document describing the drug's approved uses (in the United States), efficacy, dosing, and side effects. The official Cymbalta site is here: www.cymbalta.com .

Incidentally, Cymbalta is approved as a treatment for peripheral neuropathy (PN) *due to diabetes*. This doesn't mean it won't help with PN due to other causes, but the officially approved indication is "Diabetic Peripheral Neuropathic Pain".

Lyrica (pregabalin) is a newer version of an older drug, Neurontin (gabapentin). Lyrica is officially approved as a treatment for "neuropathic pain associated with diabetic peripheral neuropathy." It is also approved to be used the help prevent epileptic seizures in individuals who might otherwise have such seizures. Neurontin is also commonly prescribed as a medication to help prevent epileptic seizures.

The official Lyrica Web site is here: www.lyrica.com .

Ricardo

Re: Peripheral neuropathy

by Stann on Sat Mar 27, 2010 4:43 pm

sally moyer wrote:Massaging your hands or feet can really help. See if your wife would massage them for you. Besides helping with the PN, it's just nice and relaxing to receive a massage and can be a much needed break from the stress of myeloma.


I started getting PN in my feet after 5th cycles of Rev/dx/Velcade. I stopped all meds in preparation for stem cell and the PN started 2 weeks later. Anyway, I've used an electric back massager the last 2 nights on my feet and I think it's working!

Stann
Name: Stann
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 9/11/09
Age at diagnosis: 46

Re: Peripheral neuropathy

by Beacon Staff on Wed Mar 31, 2010 8:59 am

Dr. Martha Lacy from the Mayo Clinic said:

"Unfortunately peripheral neuropathy is a complication of a number of myeloma therapies including thalidomide (Thalomid), Velcade (bortezomib) and vincristine (Oncovin). It may lessen or resolve completely when the drug is discontinued. It is hard to predict ahead of time who will get it or whether it will resolve.

Some claim taking vitamins will help prevent it but this is unproven.

There are a number of medications that may help patients manage the pain including Neurontin (gabapentin), Lyrica (pregabalin), Cymbalta (duloxetine) and amitriptyline (Elavil).

Alternatively, massage, acupuncture or exercise may help. If the area that is bothersome is not too large (e.g. feet only), some patients may find relief with anesthetic creams."

Beacon Staff

Re: Peripheral neuropathy

by Julie Shilane on Sat Apr 17, 2010 9:11 pm

Fred, you may find the following article helpful:

Causes Of And Treatments For Multiple Myeloma Drug-Induced Nerve Damage

It reports that Velcade-based peripheral neuropathy is more likely to be reversed after discontinuation of treatment as compared to thalidomide-based neuropathy.

It also describes several medicinal and non-medicinal suggestions for alleviating symptoms.

Julie Shilane
Name: Julie Shilane, Beacon Staff

Re: Peripheral neuropathy

by Caro on Sun Apr 18, 2010 10:13 am

Hi Fred,

My partner also had neuropathy in his feet. In the rehab clinic they massaged "Aconit oil" in his feet - and that helped. Aconit oil in Germany you can buy free and it is really harmless and without any side effects.

I do not know if they have in the US, but it is a mixture of aconite, camphor and lavender in peanut oil.

Wish you a nice Sunday

Caro :D

Caro
Name: Caro
Who do you know with myeloma?: My partner since more than 12 years
When were you/they diagnosed?: Aug. 2007
Age at diagnosis: 57

Re: Peripheral neuropathy

by lyndaclark on Sat Nov 13, 2010 12:03 am

I have experienced neuropathy in my lower legs and feet ever since undergoing chemo (thalidomide, dex, melphalan) and SCTs in 2006. It seems to be worse later at night when laying in bed: severe cramping, numbness, tingling. Does anyone have suggestions on ways to alleviate the symptoms?

lyndaclark
Who do you know with myeloma?: Self
When were you/they diagnosed?: August 2005
Age at diagnosis: 49

Re: Peripheral neuropathy

by Stann on Sat Nov 13, 2010 11:08 pm

Hi Linda,

I have had neuropathy in my feet which was caused by Velcade. At one point it got so bad that my nerves were firing every 30 seconds all night long. I was in tears.

Then a myeloma specialist recommended Cymbalta. I started that and after 2 days, my neuropathy was so much better I couldn't believe it.

I told my local oncologist, who had never heard of Cymbalta (duloxetine). Since then he has pre­scribed it to two other multiple myeloma patients and they are "hooked". It's worth a try.

Good Luck, Stan

Stann
Name: Stann
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 9/11/09
Age at diagnosis: 46

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