Hi,
I am experiencing the most distressing muscle tightness and rigidity over the last couple of months and wondering if anyone else is suffering the same. I feel it is more muscle-related rather than bone pain.
I have recently started on Kyprolis (carfilzomib), Pomalyst (pomalidomide), and dexamethasone treatment. I have just finished the second cycle.
I can barely walk or lift my arms without excruciating pain and weakness. I cannot turn in bed, or shift in chairs, without what feels like my body seizing up. The weakness is extreme too – dressing, getting up from chairs, beds, etc, brushing teeth, etc, is a real effort.
Any ideas? How do you deal with this? Is it the Pomalyst or Kyprolis? Or multiple myeloma?
Any advice would be deeply appreciated as I feel I am losing my mind.
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skippy - Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2013
- Age at diagnosis: 50
Re: Muscle tightness / weakness on Kyprolis, Pomalyst & dex
Skippy,
See https://www.drugs.com/pomalyst.html
"Pomalyst side effects
Call your doctor at once if you have:
....signs of tumor cell breakdown-lower back pain, blood in your urine, little or no urinating; numbness or tingly feeling around your mouth; muscle weakness or tightness; fast or slow heart rate, weak pulse, feeling short of breath; confusion, fainting".
This is the companion link to Kyprolis. Except for chest tightness, it doesn't have the same warning regarding muscle tightness that Pomalyst does.
https://www.drugs.com/cdi/carfilzomib.html
See https://www.drugs.com/pomalyst.html
"Pomalyst side effects
Call your doctor at once if you have:
....signs of tumor cell breakdown-lower back pain, blood in your urine, little or no urinating; numbness or tingly feeling around your mouth; muscle weakness or tightness; fast or slow heart rate, weak pulse, feeling short of breath; confusion, fainting".
This is the companion link to Kyprolis. Except for chest tightness, it doesn't have the same warning regarding muscle tightness that Pomalyst does.
https://www.drugs.com/cdi/carfilzomib.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Muscle tightness / weakness on Kyprolis, Pomalyst & dex
Thanks Multibilly.
Am I the only one going through this? How are others coping?
I forgot to say that my neuropathy in both hands and feet is increasing too, despite doctors assuring me this regimen typically does not increase neuropathy. My legs feel heavy - like dead weights.
Am I the only one going through this? How are others coping?
I forgot to say that my neuropathy in both hands and feet is increasing too, despite doctors assuring me this regimen typically does not increase neuropathy. My legs feel heavy - like dead weights.
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skippy - Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2013
- Age at diagnosis: 50
Re: Muscle tightness / weakness on Kyprolis, Pomalyst & dex
Hello Skip:
Sorry to hear about your bad side effects. I do not recall the specific combo that you are using discussed before on the forum. It may be the case that you are one of the relatively new patients to use that combo, and there may not be too many individuals with prior direct experience with it to guide you.
From viewing your other thread, regarding switching out the Kyprolis to Empliciti, leads me to ask if the doctors think that Kyprolis is the culprit?
Kyprolis causes less peripheral neuropathy than Velcade; however, it does not eliminate it. I understand that for patients who switched from Velcade to Kyprolis that the peripheral neuropathy has somewhat of a different feel to it. I am wondering if what you are calling muscle cramping is the peripheral neuropathy? Secondly, most patients on Kyprolis do get some degree of shortness of breath. The trick of course, is if it's "tolerable". Also, have you had dex before at the level you are having it now? Part of what you are describing may be the "crash" part of the dex.
I hope your new combo works better. It's not a high-tech answer, and the ship may have sailed, but I have heard that hydration is critically important to manage the side effects of Kyprolis, before, during, and after the infusions.
Good luck to you.
Sorry to hear about your bad side effects. I do not recall the specific combo that you are using discussed before on the forum. It may be the case that you are one of the relatively new patients to use that combo, and there may not be too many individuals with prior direct experience with it to guide you.
From viewing your other thread, regarding switching out the Kyprolis to Empliciti, leads me to ask if the doctors think that Kyprolis is the culprit?
Kyprolis causes less peripheral neuropathy than Velcade; however, it does not eliminate it. I understand that for patients who switched from Velcade to Kyprolis that the peripheral neuropathy has somewhat of a different feel to it. I am wondering if what you are calling muscle cramping is the peripheral neuropathy? Secondly, most patients on Kyprolis do get some degree of shortness of breath. The trick of course, is if it's "tolerable". Also, have you had dex before at the level you are having it now? Part of what you are describing may be the "crash" part of the dex.
I hope your new combo works better. It's not a high-tech answer, and the ship may have sailed, but I have heard that hydration is critically important to manage the side effects of Kyprolis, before, during, and after the infusions.
Good luck to you.
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JPC - Name: JPC
Re: Muscle tightness / weakness on Kyprolis, Pomalyst & dex
I am on the same combination of drugs and also have muscle weakness in my legs. I think it may be the Pomalyst. I go to physical therapy once a week and try to exercise to keep up muscle strength. Strength and fortitude to you.
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Anonymous
Re: Muscle tightness / weakness on Kyprolis, Pomalyst & dex
Hi Skippy,
I just started the same combo you are on – two days a week, Thursdays and Fridays. Feel ok today, but ready for the crash. I will keep you posted if I experience your symptoms.
Bill
I just started the same combo you are on – two days a week, Thursdays and Fridays. Feel ok today, but ready for the crash. I will keep you posted if I experience your symptoms.
Bill
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bill33706 - Name: Bill
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 67
Re: Muscle tightness / weakness on Kyprolis, Pomalyst
I took Kyprolis, Pomalyst, and dex (KPD) as my initial therapy January through June 2016. During that time I experienced painful cramps in my calves in bed. We think it was the Pomalyst. I "treated' by drinking tonic water before bed and it worked wonders.
Following my autologous stem cell transplant, I experienced a good deal of muscle weakness overall, but mostly in my legs and hips. I also had a serious nerve pain in my right leg, less so in left. This occurred in my calf near my knee. I noticed it most often after showering when running a towel down my leg I would feel a brief shooting/burning pain down my lower leg.
I'm 105 days post-transplant and taking a half dose of Kyprolis, Pomalyst, and dex (KPD) as maintenance. The nerve pain is improving with time. I'm walking and exercising as much as I can to regain strength.
I know my situation is not the same as your husband's, but I think certainly these drugs diminish our muscles and play with our nerves. If it gets serious and debilitating, our doctors may need to change medicines or doses. But as patients I think we put a lot on ourselves to get exercise, work on flexibility and understand what is happening. Seeing a therapist sounds like a great idea. One I've considered a number of times. I had great experience with that years ago to deal with back and knee issues.
Following my autologous stem cell transplant, I experienced a good deal of muscle weakness overall, but mostly in my legs and hips. I also had a serious nerve pain in my right leg, less so in left. This occurred in my calf near my knee. I noticed it most often after showering when running a towel down my leg I would feel a brief shooting/burning pain down my lower leg.
I'm 105 days post-transplant and taking a half dose of Kyprolis, Pomalyst, and dex (KPD) as maintenance. The nerve pain is improving with time. I'm walking and exercising as much as I can to regain strength.
I know my situation is not the same as your husband's, but I think certainly these drugs diminish our muscles and play with our nerves. If it gets serious and debilitating, our doctors may need to change medicines or doses. But as patients I think we put a lot on ourselves to get exercise, work on flexibility and understand what is happening. Seeing a therapist sounds like a great idea. One I've considered a number of times. I had great experience with that years ago to deal with back and knee issues.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Muscle tightness / weakness on Kyprolis, Pomalyst & dex
Wondering if you ever got to the bottom of this, skippy, determining what was the cause, and found anything to make it more bearable.
I’m on ixazomib (Ninlaro), thalidomide, and dexamethasone and getting muscle cramping / tightness exactly as you describe. It’s completely crippling. As well as very painful.
I’m hoping it is just a side effect and that, with the right medicine, it might be brought under control. In the mean time, I’m a bit of a mess!
I’m on ixazomib (Ninlaro), thalidomide, and dexamethasone and getting muscle cramping / tightness exactly as you describe. It’s completely crippling. As well as very painful.
I’m hoping it is just a side effect and that, with the right medicine, it might be brought under control. In the mean time, I’m a bit of a mess!
Re: Muscle tightness / weakness on Kyprolis, Pomalyst & dex
Sorry to hear about your painful muscle tightness and cramps, alexbicknell.
There have been several discussions here in the forum related to cramps and cramping, and many of the discussions have suggestions about how to get rid of the cramping. Maybe some of the suggestions will work for you. Here's a list of cramping-related discussions.
The list is one of many helpful ones you'll find in this post pinned to the top of the "Treatments & Side Effects" section of the forum:
Good luck!
There have been several discussions here in the forum related to cramps and cramping, and many of the discussions have suggestions about how to get rid of the cramping. Maybe some of the suggestions will work for you. Here's a list of cramping-related discussions.
The list is one of many helpful ones you'll find in this post pinned to the top of the "Treatments & Side Effects" section of the forum:
Good luck!
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