Neuropathy from Velcade (bortezomib) (and thalidomide) are difficult side effects to deal with.
I usually recommend a cocktail of over the counter supplements. It is not tested in clinical trials. Therefore, the caveat is that it represents a bit of "art in medicine," not so much science. Patients do frequently note improvement in symptoms, but not all.
1. Multi-B Complex Vitamins - With B1, B6, B12, B6 at recommended daily allowance; B6 dose should not exceed 100 mg
2. Folic Acid - 1 mg/day
3. Vitamin E - Up to 400 IU daily
4. Supplements:
-Acetyl L-Carnitine: 500 mg twice daily with food, AND Alpha-Lipoic acid: 500mg a daily with food
OR
-A combination pill of : Alpha lipoic acid 200 mg and Acetyl-L-Carnitine 500 mg: take one tablet twice a day
OR
-L-glutamine: 500mg TID (three times a day) with meals and can titrate up to 3gms daily (L-glutamine is also good for cramps associated with Revlimid (lenalidomide))
5. Cocoa butter - It is rich in vitamin E and other emollients; apply to extremities twice a day with gentle massage.
Hope that this helps.
It is also important that you keep your doctor informed of the status of your neuropathy. We need to be able to dose adjust to avoid escalation of your symptoms to pain.
Also let them know all of the medication and supplements you are taking.
Forums
Re: Peripheral neuropathy
In 2008, years before my myeloma dx., I had the shingles on the left side of my face really bad---went into the eye with corneal lesions, etc. When the sores cleared up, for a year, I was left with something called post herpetic neuralgia---pain, numbness, etc. I was prescribed Lyrica. It worked. Ask your doctor whether this would work for PN.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Peripheral neuropathy
For those of you interested in this conversation about treating peripheral neuropathy, you may also be interested in a related forum conversation about preventing peripheral neuropathy:
https://myelomabeacon.org/forum/preventing-peripheral-neuropathy-t24.html
Many of the approaches that can be used to try to prevent peripheral neuropathy can also be used if you have already developed neuropathy.
https://myelomabeacon.org/forum/preventing-peripheral-neuropathy-t24.html
Many of the approaches that can be used to try to prevent peripheral neuropathy can also be used if you have already developed neuropathy.
Re: Peripheral neuropathy
I have delayed PN which started about 3 weeks post treatment. I've had it for approximately 3 weeks in my feet. I'm able to walk and ride a bike but have numbness and in the AM sharp pains in one foot. I'm guessing I have a mild case. I go in for a SCT next week and we will discuss taking Neurontin. Would like to hear from any of you that have used Neurontin and does it take the PN away? What are some of the side effects you've experienced?
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mso - Name: Mic
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Sept 2010
- Age at diagnosis: 53
Re: Peripheral neuropathy
I started my husband on Dr Shain's suggested regimen:
- A combination pill of : Alpha lipoic acid 200 mg and Acetyl-L-carnitine 500 mg: take one tablet twice a day
a few days ago.
He's been off Velcade since late August but has tingling in the fingers and feet. Nothing severe, but enough to annoy him. We hoped the supplements would help that go away
Yesterday, he started having nerves firing in his feet. It's painful, and not something he ever had on Velcade.
Is this likely a good sign (nerves are repairing themselves) or should we get him off the supplements ASAP?
Cheers,
Lisa
- A combination pill of : Alpha lipoic acid 200 mg and Acetyl-L-carnitine 500 mg: take one tablet twice a day
a few days ago.
He's been off Velcade since late August but has tingling in the fingers and feet. Nothing severe, but enough to annoy him. We hoped the supplements would help that go away
Yesterday, he started having nerves firing in his feet. It's painful, and not something he ever had on Velcade.
Is this likely a good sign (nerves are repairing themselves) or should we get him off the supplements ASAP?
Cheers,
Lisa
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Peripheral neuropathy
Hello,
I am relatively stable with multiple myeloma, but I have problems with spine and neuropathy. I have pain and tingling in my arms and legs. I think that his is because of peripheral neuropathy (from thalidomide) . What kind of therapy is good for neuropathy? Please keep in mind that our medicine here in Serbia is far away from yours in the United States, Canada, and similar places. It's very primitive.
I wish you all the best.
I am relatively stable with multiple myeloma, but I have problems with spine and neuropathy. I have pain and tingling in my arms and legs. I think that his is because of peripheral neuropathy (from thalidomide) . What kind of therapy is good for neuropathy? Please keep in mind that our medicine here in Serbia is far away from yours in the United States, Canada, and similar places. It's very primitive.
I wish you all the best.
Re: Peripheral neuropathy
Hi Olivera:
I am glad to hear you're doing well with your myeloma, and sorry for your neuropathy and spine pain. Unfortunately I have no idea about the Serbian medical system, and am not sure if what I have been using is available to you, but I found relief from Cymbalta (duloxetine) for my neuropathy. The Cymbalta was recommended by someone on this forum. I am sorry, I don't remember exactly who, to give them credit.
I wish you continued success with your myeloma, and hope that you find something to help for your pain.
Kathleen
I am glad to hear you're doing well with your myeloma, and sorry for your neuropathy and spine pain. Unfortunately I have no idea about the Serbian medical system, and am not sure if what I have been using is available to you, but I found relief from Cymbalta (duloxetine) for my neuropathy. The Cymbalta was recommended by someone on this forum. I am sorry, I don't remember exactly who, to give them credit.
I wish you continued success with your myeloma, and hope that you find something to help for your pain.
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Peripheral neuropathy
This is a topic that also interests me.
I'm part of a clinical study where I am doing Revlimid, Velcade, and dexamethasone (RVD) 2 weeks on and then 1 week off. Plan is 3 cycles, which I have recently completed, then off 2-3 weeks to harvest for possible future stem cell transplant. Once the stem cell harvest is completed, I will go back and complete another 5 RVD cycles (8 total).
I always looked forward to my time off. After 2 cycles, I requested subcutaneous Velcade (I had been getting an IV push) because I felt a bit of neuropathy. So since then, I've been getting Velcade via subq injections. Unfortunately, the neuropathy has been getting worse over time. It appears to be worse with the subq shots. It's been a couple of weeks since I've had any Velcade and it still continues to get worse. I wake up regularly around 3 am because I am feeling it in my buttocks, and it is impossible to get comfortable. Now I feel like my feet bottoms are leather and when I walk in what were previously comfortable shoes, it now feels like I am walking on rocks.
Anyone have any suggestions? My Lyrica (pregabalin) prescription and fentanyl patch are doing absolutely nothing! Oh, to feel comfortable again. Some day ...
I'm part of a clinical study where I am doing Revlimid, Velcade, and dexamethasone (RVD) 2 weeks on and then 1 week off. Plan is 3 cycles, which I have recently completed, then off 2-3 weeks to harvest for possible future stem cell transplant. Once the stem cell harvest is completed, I will go back and complete another 5 RVD cycles (8 total).
I always looked forward to my time off. After 2 cycles, I requested subcutaneous Velcade (I had been getting an IV push) because I felt a bit of neuropathy. So since then, I've been getting Velcade via subq injections. Unfortunately, the neuropathy has been getting worse over time. It appears to be worse with the subq shots. It's been a couple of weeks since I've had any Velcade and it still continues to get worse. I wake up regularly around 3 am because I am feeling it in my buttocks, and it is impossible to get comfortable. Now I feel like my feet bottoms are leather and when I walk in what were previously comfortable shoes, it now feels like I am walking on rocks.
Anyone have any suggestions? My Lyrica (pregabalin) prescription and fentanyl patch are doing absolutely nothing! Oh, to feel comfortable again. Some day ...
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Mank - Name: Mank
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2017
- Age at diagnosis: 56
Re: Peripheral neuropathy
Mank,
Ask your pain management doctor about nortriptyline (Pamelor) and amitriptyline (Elavil). My dad recently started one of these medications and has been able to sleep the whole night without being woken up by peripheral neuropathy.
Ask your pain management doctor about nortriptyline (Pamelor) and amitriptyline (Elavil). My dad recently started one of these medications and has been able to sleep the whole night without being woken up by peripheral neuropathy.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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