I just discontinued my Velcade, taken with Revlimid, due to a sudden onset of neuropathy in both lower legs, consisting of extreme leg weakness and numbness of feet. I had been on Velcade for over two months with no previous problems.
After a week plus, post Velcade, the neuropathy is still present, and extreme weakness in both legs has hardly improved even with heavy doses of IV steroids.
Has anyone else seen anything similar?
Forums
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Lidochef - Name: Lidochef
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2015
- Age at diagnosis: 60
Re: Persistent peripheral neuropathy from Velcade
Are they injecting it in your veins or subcutaneously ?
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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
Re: Persistent peripheral neuropathy from Velcade
Steroids can cause muscle weakness in the thighs.
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cdnirene - Name: Irene S
- Who do you know with myeloma?: me
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 66
Re: Persistent peripheral neuropathy from Velcade
Hi Lidochef,
It generally takes a lot more than just a week for the neuropathy from Velcade to clear up. Sometimes, unfortunately, it never completely clears.
It probably won't surprise you to hear that there have been a lot of discussions here in the forum about neuropathy. I think you'll find it helpful to read through some of them, if you haven't already. If you click on this link, you'll find a lot of the forum discussions on the subject.
The link is from the posting "Useful links to existing forum discussions" in the Treatments & Side Effects part of the forum. The posting has links to forum discussions about many different treatments and side effects. It may be really helpful to you for other issues that may come up in the future.
I hope your neuropathy starts clearing up soon. Please keep us updated on how things are going.
Good luck!
It generally takes a lot more than just a week for the neuropathy from Velcade to clear up. Sometimes, unfortunately, it never completely clears.
It probably won't surprise you to hear that there have been a lot of discussions here in the forum about neuropathy. I think you'll find it helpful to read through some of them, if you haven't already. If you click on this link, you'll find a lot of the forum discussions on the subject.
The link is from the posting "Useful links to existing forum discussions" in the Treatments & Side Effects part of the forum. The posting has links to forum discussions about many different treatments and side effects. It may be really helpful to you for other issues that may come up in the future.
I hope your neuropathy starts clearing up soon. Please keep us updated on how things are going.
Good luck!
Re: Persistent peripheral neuropathy from Velcade
My peripheral neuropathy cleared up this year within 2 months after stopping Velcade, I was thinking it would be permanent, so I have happily parked up the 'wheelie walker' that I used to avoid falling over (when numb) at night-time or first thing in the morning.
Good luck.
Good luck.
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Lesley Rae
Re: Persistent peripheral neuropathy from Velcade
Unfortunately, it will probably be several months before you start to see any relief from the PN and leg weakness. After 7 months of Velcade, I suffered severe neuropathy and leg weakness. I did not see any sign of improvement for 5 or 6 months. It is now one year since my last Velcade treatment, and my neuropathy has greatly improved. However it is still quite painful. I would say the improvement plateaued after about 9 months. I had several IVIG treatments along the way which improved my leg weakness and PN a great deal. All the best.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Persistent peripheral neuropathy from Velcade
My husband has pain from mid-thigh / knees down and feels leg weakness. The doctor told him it was most likely the Velcade. We were stopping Velcade in prep for the stem cell transplant (SCT). I am hoping he won't do Velcade post-transplant and this will go away.
Don't know that this helps, but yes, I feel my husband is experiencing what you are experiencing.
Don't know that this helps, but yes, I feel my husband is experiencing what you are experiencing.
Re: Persistent peripheral neuropathy from Velcade
I am hoping that your neuropathy will eventually go away.
My husband has been on Velcade, Thalomid, and Revlimid, and had to stop all three of these drugs due to neuropathy. He had a stem cell transplant (SCT) in 2012 and achieved a complete remission. He was on only dex for maintenance because he could not tolerate some of the other drugs usually used with dex. He relapsed in January of this year.
He was put on Pomalyst in April and is tolerating it very well. The neuropathy does not seem to have gotten worse, but the doctor says he has permanent nerve damage. He still has some pain but it does not seem to be as bad as it was a year ago. He has more trouble with balance not being able to feel the bottom of his feet. He also does not drive very often due to the neuropathy. These are the problems that impact his life the most.
We pray that you do not have the same experience.
My husband has been on Velcade, Thalomid, and Revlimid, and had to stop all three of these drugs due to neuropathy. He had a stem cell transplant (SCT) in 2012 and achieved a complete remission. He was on only dex for maintenance because he could not tolerate some of the other drugs usually used with dex. He relapsed in January of this year.
He was put on Pomalyst in April and is tolerating it very well. The neuropathy does not seem to have gotten worse, but the doctor says he has permanent nerve damage. He still has some pain but it does not seem to be as bad as it was a year ago. He has more trouble with balance not being able to feel the bottom of his feet. He also does not drive very often due to the neuropathy. These are the problems that impact his life the most.
We pray that you do not have the same experience.
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suearl - Name: Earl
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 79
Re: Persistent peripheral neuropathy from Velcade
There are drugs that help some with neuropathy. Lyrica (pregabalin) and gabapentin (Neurontin) are two of them.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Persistent peripheral neuropathy from Velcade
I was diagnosed with multiple myeloma in 2009. I received radiation, chemo, and 2 bone marrow transplants. I also received Velcade, Thalomid, and Revlimid, but my doctors explained to me that any of the treatments I had could cause persistent peripheral neuropathy. I have been in complete remission for the past 4 years, 3 years since stopping Revlimid.
I have severe peripheral neuropathy. I was told that mine was permanent. I am in constant and chronic pain. My neuropathy is in my hands and my feet with numbness up to the middle of my calf. I can't even hold a pencil for more than 25 seconds without them first tingling then going numb. I had to stop updating my family online about my treatments because typing is hard to do as well. My feet are constantly in pain especially at night. I have to wear socks all the time because I also get the feeling that they are cold on top of tingling, numbness and the feeling of being on fire. I also experience swelling frequently in my hands and my feet.
I can't do a lot of the activities that I was doing before because sitting still or walking for more than 10 minutes causes the pain to be greater because the swelling will start. Once the swelling starts. it causes severe pain while walking, so I wind up being in a wheel chair when we have outings. Most of the time I can walk with a cane, especially in the house, but I spend most of my time with my feet propped up on a wedge to decrease swelling.
I was on gabapentin for 2 years and, when that didn't work for me anymore, I was placed on Lyrica 4 times a day So far it helps. I was unable to work during my treatments and because of the neuropathy I was unable to return to work, so I retired at the ripe old age of 43.
Surprisingly, I found that a hot tub feels great on my feet and so does swimming.
I have severe peripheral neuropathy. I was told that mine was permanent. I am in constant and chronic pain. My neuropathy is in my hands and my feet with numbness up to the middle of my calf. I can't even hold a pencil for more than 25 seconds without them first tingling then going numb. I had to stop updating my family online about my treatments because typing is hard to do as well. My feet are constantly in pain especially at night. I have to wear socks all the time because I also get the feeling that they are cold on top of tingling, numbness and the feeling of being on fire. I also experience swelling frequently in my hands and my feet.
I can't do a lot of the activities that I was doing before because sitting still or walking for more than 10 minutes causes the pain to be greater because the swelling will start. Once the swelling starts. it causes severe pain while walking, so I wind up being in a wheel chair when we have outings. Most of the time I can walk with a cane, especially in the house, but I spend most of my time with my feet propped up on a wedge to decrease swelling.
I was on gabapentin for 2 years and, when that didn't work for me anymore, I was placed on Lyrica 4 times a day So far it helps. I was unable to work during my treatments and because of the neuropathy I was unable to return to work, so I retired at the ripe old age of 43.
Surprisingly, I found that a hot tub feels great on my feet and so does swimming.
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Sassyprincess1
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