I completed my seventh RVD (Revlimid, Velcade, dex) cycle in December. My bone marrow biopsy showed a reduction to 14% plasma cells (from 90%), but my oncologist feels that there is still too much myeloma present to attempt a SCT, so I will be starting carfilzomib (Kyprolis) soon.
During my RVD treatment, I was feeling rather "cocky" about tolerating it well (maybe it was the Decadron), but now it seems that the neuropathy has set in full force. My oncologist has prescribed gabapentin (Neurontin), but I'm afraid of it.
I read the paperwork, and it seems to be counter-indicated in patients with depression. I have suffered bouts of depression during treatment. It seems like a dangerous drug.
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Re: Gabapentin (Neurontin) for neuropathy - experiences?
OK, regarding gabapentin. I have been taking gabapentin for several years for an unrelated condition. I will share with you that, at the beginning, and depending on dosing strength, I did feel loopy. But once my brain was accustomed to this medication, I did sense feeling sleepy. However, it is recommended not to operate a car or mechanical devices, or use ETOH, while on this drug.
You can check its side effects on Wikipedia or Mayo Clinic just by googling side effects of gabapentin. I am sure that there are many side effects, but I only experienced a bit of light-headedness and sleepiness ... but I only take this at night, but often wake up a bit drowsy, but it wears off in a few hours.
Hope I have helped. Good luck. It beats being in pain with the peripheral neuropathy!
You can check its side effects on Wikipedia or Mayo Clinic just by googling side effects of gabapentin. I am sure that there are many side effects, but I only experienced a bit of light-headedness and sleepiness ... but I only take this at night, but often wake up a bit drowsy, but it wears off in a few hours.
Hope I have helped. Good luck. It beats being in pain with the peripheral neuropathy!
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smolder4ever
Re: Gabapentin (Neurontin) for neuropathy - experiences?
Hello Jimskayak,
Like you, my induction therapy was seven cycles of RVD therapy. And, like you, I was cocky about tolerating it very well. I was still working full time, and I used to get my Velcade injections during my lunch hour. I never experienced any side effects other than insomnia during dex days.
The RVD regimen resulted in a bone marrow plasma cell percentage of 10% and an M-spike of 0.4 g/dL (4 g/L). Not great, but good enough to proceed to transplant. My auto transplant was a failure.
During cycle seven, I started to experience mild neuropathy in my feet, and my oncologist started me on gabapentin 300 mg daily. During my transplant, my neuropathy progressed to the point where I required a walker to move about. I was not only experiencing neuropathy in my feet, but also losing motor nerves in my legs.
After several MRI's, blood tests, and nerve conduction tests, both my oncologist and neurologist suggested it was a demylinating effect precipitated by the Velcade. During the months following my transplant and while diagnosing my neurological issues, the doctors continued to increase my gabapentin dose.
Although the manufacturer's recommended maximum daily dose is 1800 mg, my research has found dosages of 3600 mg a day are sometimes necessary to achieve relief. I am currently taking 2700 mg a day in 3 divided doses, and I tolerate it very well. My neuropathy is severe and I have been titrating my gabapentin dose upward for the past several weeks.
For the most part, the drowsiness associated with gabapentin is usually seen upon initial dose increase, then will subside as you get used to it. I have not experienced drowsiness or any other side effects from the higher dose of gabapentin. I plan to gradually increase my dose since I am now experiencing some relief from my neuropathy.
Do not delay getting therapy for your neuropathy. I tolerated the first 6 cycles of RVD so well I convinced myself it was not happening to me. I understand that the sooner you treat neuropathy, the better the results.
I wish you the very best.
Like you, my induction therapy was seven cycles of RVD therapy. And, like you, I was cocky about tolerating it very well. I was still working full time, and I used to get my Velcade injections during my lunch hour. I never experienced any side effects other than insomnia during dex days.
The RVD regimen resulted in a bone marrow plasma cell percentage of 10% and an M-spike of 0.4 g/dL (4 g/L). Not great, but good enough to proceed to transplant. My auto transplant was a failure.
During cycle seven, I started to experience mild neuropathy in my feet, and my oncologist started me on gabapentin 300 mg daily. During my transplant, my neuropathy progressed to the point where I required a walker to move about. I was not only experiencing neuropathy in my feet, but also losing motor nerves in my legs.
After several MRI's, blood tests, and nerve conduction tests, both my oncologist and neurologist suggested it was a demylinating effect precipitated by the Velcade. During the months following my transplant and while diagnosing my neurological issues, the doctors continued to increase my gabapentin dose.
Although the manufacturer's recommended maximum daily dose is 1800 mg, my research has found dosages of 3600 mg a day are sometimes necessary to achieve relief. I am currently taking 2700 mg a day in 3 divided doses, and I tolerate it very well. My neuropathy is severe and I have been titrating my gabapentin dose upward for the past several weeks.
For the most part, the drowsiness associated with gabapentin is usually seen upon initial dose increase, then will subside as you get used to it. I have not experienced drowsiness or any other side effects from the higher dose of gabapentin. I plan to gradually increase my dose since I am now experiencing some relief from my neuropathy.
Do not delay getting therapy for your neuropathy. I tolerated the first 6 cycles of RVD so well I convinced myself it was not happening to me. I understand that the sooner you treat neuropathy, the better the results.
I wish you the very 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: Gabapentin (Neurontin) for neuropathy - experiences?
Hi Jim:
My induction therapy is 9 cycles of VMP (Velcade, melphalan, prednisone). I am about to start my 5th cycle.
While in the 2nd cycle, I experienced neuropathy primarily in my feet. The Velcade dosage was adjusted downward, and I was prescribed Elavil 20 mg, to be taken at night time. My naturopath provided me with alpha lipoic acid, of which I take 2 x 400 mg a day. It has kept things under control for me.
My induction therapy is 9 cycles of VMP (Velcade, melphalan, prednisone). I am about to start my 5th cycle.
While in the 2nd cycle, I experienced neuropathy primarily in my feet. The Velcade dosage was adjusted downward, and I was prescribed Elavil 20 mg, to be taken at night time. My naturopath provided me with alpha lipoic acid, of which I take 2 x 400 mg a day. It has kept things under control for me.
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doingit
Re: Gabapentin (Neurontin) for neuropathy - experiences?
I have been on gabapentin since the summer of 2009, following spinal surgery and subsequently after being diagnosed with multiple myeloma, also in the dark summer of 2009.
Given all the treatments and medications I have received since then, it is impossible to separate the impact of gabapentin from other factors. My neuropathy has increased (but not as debilitating as some have reported), and I've asked my oncologist whether I can start tapering down and out because I doubt that the gabapentin is helping and any reduction in daily meds seems like a good thing.
So I have reduced from 1800 mg in two doses a day down to 600, on the road to phasing out completely. I still don't feel any differences. Am I missing something?
Given all the treatments and medications I have received since then, it is impossible to separate the impact of gabapentin from other factors. My neuropathy has increased (but not as debilitating as some have reported), and I've asked my oncologist whether I can start tapering down and out because I doubt that the gabapentin is helping and any reduction in daily meds seems like a good thing.
So I have reduced from 1800 mg in two doses a day down to 600, on the road to phasing out completely. I still don't feel any differences. Am I missing something?
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BarnettFB
Re: Gabapentin (Neurontin) for neuropathy - experiences?
I do not have myeloma, I am only MGUS. However, I started taking gabapentin two years ago for neuropathy and pain. It made me very sleepy initially, so I only took 600 mg for some time, gradually I added another 300 mg in the morning and, up until recently, I was on 1200 mg.
So it took a while to adjust to the groggy side effect, but it seemed to go away and become tolerable.
Gabapentin helped completely with the tingling, numbing, and pain from the neuropathy at that dose. However, I did not make the correlation between my increased dosage and my significantly increased cognitive and memory impairment. Because it caused me great distress and very poor job performance, I am now almost completely off of it and I find my memory and cognitive function are returning to almost normal.
On the other hand, the neuropathy symptoms returned almost immediately. And those symptoms make everyday life difficult. All medications have side effects. If I were in severe pain, I would probably resume the drug, it was that effective for me.
Wishing you the best of luck in your choice of treatment.
So it took a while to adjust to the groggy side effect, but it seemed to go away and become tolerable.
Gabapentin helped completely with the tingling, numbing, and pain from the neuropathy at that dose. However, I did not make the correlation between my increased dosage and my significantly increased cognitive and memory impairment. Because it caused me great distress and very poor job performance, I am now almost completely off of it and I find my memory and cognitive function are returning to almost normal.
On the other hand, the neuropathy symptoms returned almost immediately. And those symptoms make everyday life difficult. All medications have side effects. If I were in severe pain, I would probably resume the drug, it was that effective for me.
Wishing you the best of luck in your choice of treatment.
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Gabapentin (Neurontin) for neuropathy - experiences?
Jim,
The gabapentin did not work for me at all. My MS doc prescribed Lyrica (pregabalin) 50 mg twice a day and it really helped. No generic is available, but there is a co-pay assist card on the Lyrica website.
Best of health!
BN
The gabapentin did not work for me at all. My MS doc prescribed Lyrica (pregabalin) 50 mg twice a day and it really helped. No generic is available, but there is a co-pay assist card on the Lyrica website.
Best of health!
BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Gabapentin (Neurontin) for neuropathy - experiences?
Jim,
Due to the Velcade / dex I have been receiving, I started getting neuropathy in my feet and pain in my lower legs. My podiatrist, who made some inserts for my shoes, recommended trying some Lyrica samples that he had. The pain was really starting to effect my sleep. After only 4 or 5 hours of taking the Lyrica , the pain subsided. It worked that well.
My insurance would not pay for Lyrica until I tried gabapentin for a while. After 3 weeks and little relief from gabapentin, my oncologist was able to get approval for Lyrica. I take the Lyrica 3 times per day, but I am starting to think that twice per day would do it. I do get a little light headed about 30 minutes after taking the Lyrica, which only lasts for about another 15 minutes or so.
Really, this only helps with the pain and not the reason for the pain. I am currently off Velcade in preparation for a stem cell harvest. After 15 days off, I can already feel less neuropathy and very little pain.
Hope this helps.
Castaway
Due to the Velcade / dex I have been receiving, I started getting neuropathy in my feet and pain in my lower legs. My podiatrist, who made some inserts for my shoes, recommended trying some Lyrica samples that he had. The pain was really starting to effect my sleep. After only 4 or 5 hours of taking the Lyrica , the pain subsided. It worked that well.
My insurance would not pay for Lyrica until I tried gabapentin for a while. After 3 weeks and little relief from gabapentin, my oncologist was able to get approval for Lyrica. I take the Lyrica 3 times per day, but I am starting to think that twice per day would do it. I do get a little light headed about 30 minutes after taking the Lyrica, which only lasts for about another 15 minutes or so.
Really, this only helps with the pain and not the reason for the pain. I am currently off Velcade in preparation for a stem cell harvest. After 15 days off, I can already feel less neuropathy and very little pain.
Hope this helps.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
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