I developed a peripheral neuropathy almost 2 years prior to my smoldering myeloma was diagnosed. The neurologist suggested I try R-Alpha Lipoic Acid 200 mg three times a day. It has been very effective in reducing symptoms (not totally ameliorating them). R-Alpha Lipoic Acid has been prescribed for years for patients with diabetic neuropathy - and it is helpful for some, but not all, patients. I also take N-Acetyl Cysteine (500 mg) day. This has been shown to be protective to Schwann nerve cells and might be protective for peripheral neuropathy.
Now some warnings. There has been one research poster presented at a meeting that says that R-Alpha Lipoic Acid interferes with the effectiveness of Velcade. I contacted the author who said that at their clinic they recommend ALA as much as 1800 mg / day, but ask their patients not to take it on Velcade days. Likewise, there has been a report that N-Acetyl Cysteine may interfere with Velcade and likewise it is recommended that it not be taken on days of Velcade treatment, but rather afterward
Hopefully, everyone is aware of the fact that supplements that are high in polyphenols counteract the action of Velcade - such as green and black tea, blueberries, oranges, broccoli, etc and should not be taken when Velcade is given. Likewise, vitamin C also interferes with Velcade.
These articles are all available on PubMed, but I can send references if anyone is interested.
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Re: Velcade, supplements, and peripheral neuropathy
Has anyone who has neuropathy tried taking Alpha Lipoic Acid for it?
robert
robert
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caregiver
Re: Velcade, supplements, and peripheral neuropathy
Hi,
At my myeloma specialist's recommendation, I take alpha-Lipoic Acid (600 mg, 1 X daily), L-Carnitine (500 mg, 1 X daily), and Vitamin B-100 Complex (1 X daily) for peripheral neuropathy. Those probably help some, but the most effective thing seems to be Lyrica (100 mg, 2 X daily). Also massages with Cocoa Butter Cream may help.
My doctor warned me to stay away from green tea and lower my intake of vitamin C while I was on Velcade, but did not seem concerned about alpha-Lipoic Acid or broccoli at that time. But that may be why I'm only in VGPR now instead of CR.
There's so much stuff going on that it's impossible to know exactly how all of these things are interacting with each other (and the myeloma!) inside of me. I've said more than once that I feel like a walking bio-chem experiment!
At my myeloma specialist's recommendation, I take alpha-Lipoic Acid (600 mg, 1 X daily), L-Carnitine (500 mg, 1 X daily), and Vitamin B-100 Complex (1 X daily) for peripheral neuropathy. Those probably help some, but the most effective thing seems to be Lyrica (100 mg, 2 X daily). Also massages with Cocoa Butter Cream may help.
My doctor warned me to stay away from green tea and lower my intake of vitamin C while I was on Velcade, but did not seem concerned about alpha-Lipoic Acid or broccoli at that time. But that may be why I'm only in VGPR now instead of CR.
There's so much stuff going on that it's impossible to know exactly how all of these things are interacting with each other (and the myeloma!) inside of me. I've said more than once that I feel like a walking bio-chem experiment!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Velcade, supplements, and peripheral neuropathy
I remember reading some years ago on the Beacon warnings about taking green tea supplements while being treated with Velcade, based on a university study that was looking for synergistic effects of taking Velcade and green tea and found just the opposite. My HMO gave me written instructions not to take green tea while I was being given Velcade, so I did not, but I do now.
A lot of people were telling me that I should take green tea because it fights cancer and I suspect this is probably pretty common advice given by people to cancer patients of all types. I wonder how many people were taking green tea with Velcade before the warnings came out making their treatment less effective.
I also read on the Beacon a study about vitamin C possibly negating the effects of Velcade. Apparently strong anti-oxidants may have the potential to interact with Velcade. But, if I remember correctly, you would have to take a lot of vitamin C supplements just before Velcade was administered to have much of an effect. The absorption of vitamin C is limited in the body, and taking more does not mean absorbing more, and the excess is quickly passed out of the system.
The article made a good case for why mega dosing vitamin C is a waste of money despite the popular belief that it can cure a wide variety of aliments. With that knowledge, I took a multi-vitamin daily and tried to eat healthy diet and did not worry about effects on Velcade as long as I did not get crazy with doing extreme things. I felt that, while fighting stage III myeloma and undergoing induction therapy, it was not the time to start experimenting with unusual diets or mega dosing with supplements.
I also cut out all alcohol, as many of the drugs I was being prescribed said not to use with alcohol. Many of these drugs are hard on the kidneys where they are filtered out of the body, so my kidneys did not need additional stress from alcohol. The high calcium blood levels I had at time of diagnosis nearly ruined my kidney function permanently as it was.
I have been trying to deal with peripheral neuropathy of varying intensity for the last three years. When it was at its worse while on Velcade, I tried a number of medications such as Neurontin and anti-depressants that are also used to treat nerve pain, and they did not seem to help much, so I stopped using all of them.
I have been taking Vitamin B for some time and recently started trying alpha-Lipoic Acid after reading about it here. I cannot really tell if it is helping much. If it is, it is not a dramatic improvement.
A lot of people were telling me that I should take green tea because it fights cancer and I suspect this is probably pretty common advice given by people to cancer patients of all types. I wonder how many people were taking green tea with Velcade before the warnings came out making their treatment less effective.
I also read on the Beacon a study about vitamin C possibly negating the effects of Velcade. Apparently strong anti-oxidants may have the potential to interact with Velcade. But, if I remember correctly, you would have to take a lot of vitamin C supplements just before Velcade was administered to have much of an effect. The absorption of vitamin C is limited in the body, and taking more does not mean absorbing more, and the excess is quickly passed out of the system.
The article made a good case for why mega dosing vitamin C is a waste of money despite the popular belief that it can cure a wide variety of aliments. With that knowledge, I took a multi-vitamin daily and tried to eat healthy diet and did not worry about effects on Velcade as long as I did not get crazy with doing extreme things. I felt that, while fighting stage III myeloma and undergoing induction therapy, it was not the time to start experimenting with unusual diets or mega dosing with supplements.
I also cut out all alcohol, as many of the drugs I was being prescribed said not to use with alcohol. Many of these drugs are hard on the kidneys where they are filtered out of the body, so my kidneys did not need additional stress from alcohol. The high calcium blood levels I had at time of diagnosis nearly ruined my kidney function permanently as it was.
I have been trying to deal with peripheral neuropathy of varying intensity for the last three years. When it was at its worse while on Velcade, I tried a number of medications such as Neurontin and anti-depressants that are also used to treat nerve pain, and they did not seem to help much, so I stopped using all of them.
I have been taking Vitamin B for some time and recently started trying alpha-Lipoic Acid after reading about it here. I cannot really tell if it is helping much. If it is, it is not a dramatic improvement.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
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