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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Muscle Cramps

by GaryH on Mon Mar 12, 2012 3:31 pm

Hi,

Last night wasn't a good one for me. I had muscle cramps most of the night. Mostly in my feet, but some were in and around my torso.

I'm currently taking pomalidomide (Pomalyst) + dex, but these started up when i was taking Revlimid / dex. It seems that dex is the common denominator here.

I was wondering if this is what is causing it, or could it be the other drugs? All my general chemistry tests have come back in the normal range, so it's not a deficiency of calcium, or potassium, or ? I'm taking extra B vitamins also.

Any ideas?

Thanks, Gary

GaryH
Name: GaryH
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Nov./97
Age at diagnosis: 44

Re: Muscle Cramps

by Marcia on Tue Mar 13, 2012 12:15 pm

My husband had cramps as well. Someone suggested drinking Gatorade or Powerade. It may be coincidental, but it did help. He now drinks a Powerade every day. If sugar is a problem, they make Powerade Zero. He is no longer bothered by cramps. He takes Revlimid, dex, and Velcade.

Hope this helps you as well! It's sure worth a try!

Marcia

Re: Muscle Cramps

by John D on Tue Mar 13, 2012 12:25 pm

I have had extreme muscle cramps -- feet, calves, hamstrings, torso, hands and inner thigh. It makes me miserable and is especially painful when both legs cramp at the same time. I have always been prone to muscle cramps from sports, but this is in another league. It attacks during the day and at night, but my legs mainly at night.

Lab values are in the normal range, too. I attribute the muscle cramps to pomalidomide (Pomalyst) because I am not taking dex, Revlimid, Velcade, or anything else at this time. I discontinued the first cycle of pomalidomide after 15 days due to the cramping. I discontinued the second cycle of pomalidomide after 17 days due to cramping and febrile neutropenia.

My doctor is reducing my dosage of pomalidomide and prescribing Elavil (amitriptyline) for the cramping because the pomalidomide appears to have shown effectiveness on my myeloma in a reduction of my kappa free light chains and a reduction of active lesions on my PET scan.

I have found that drinking Gatorade helps alleviate the cramping somewhat.

John D

Re: Muscle Cramps

by Radbadad on Tue Mar 13, 2012 2:34 pm

There's a host of things that can cause cramping. Lack of hydration is one, but most people get enough water. Too much caffeine and some drugs are diuretics, causing the body to lose water. Alcohol is a diuretic.

Leg cramps, especially in the calves, are signs of, one, magnesium deficiency, or, two, a lack of absorption of available magnesium. Absorption can be cause by GI problems caused by things like gluten and dairy intolerance.

The biggest concern I have with cramping are blood clots. Since multiple myeloma patients are more prone to this, I would be sure to discuss with your doctor!

Radbadad
Name: Radbadad
When were you/they diagnosed?: 7/19/2011
Age at diagnosis: 62

Re: Muscle Cramps

by Nanette on Tue Mar 13, 2012 3:59 pm

Even though Dom has been off of thalidomide for quite awhile, he still gets painful hand cramps. He now carries a bottle of cider vinegar in his car. When he cramps, he takes a couple of slugs and, presto!, cramps are gone!

You guys might want to try that.

Nanette
Name: Nanette "Deaux"
Who do you know with myeloma?: My dear husband, Dominic
When were you/they diagnosed?: Spring of 2008
Age at diagnosis: 62

Re: Muscle Cramps

by TerryH on Tue Mar 13, 2012 4:36 pm

Dexamethasone will cause cramping in some patients on its own and in combination with other drugs. Revlimid also is associated with cramping.

In the myeloma clinical trial that was used to get Revlimid approved by the FDA, almost a third of the patients who took Revlimid with dexamethasone got muscle cramps. However, there also were patients in the same trial who took just dexamethasone by itself, without any Revlimid, and about one in five of those patients also reported getting cramps.

I haven't been able to find any data that reports whether pomalidomide is associated with cramps.

TerryH

Re: Muscle Cramps

by kjbender on Tue Mar 13, 2012 5:14 pm

i suffered from bad leg cramps when i was on lenalidomide (Revlimid), and am now on pomalidomide and have them again, from the foot up to the knee. I take B12 and folate for this. However, what I found that really works is tonic water. I had read this from someone else. It is the quinine in the tonic water, so I usually have 3/4 cup at night, and then I do not get cramps. It does really work.

kjbender

Re: Muscle Cramps

by GaryH on Tue Mar 13, 2012 7:43 pm

Good (or not so!) to hear I'm not alone in this.

On reflection, I remember getting severe cramps in my hands a year or so prior to being diagnosed. I'm now wondering if it's the multiple myeloma itself that could be the cause (excess calcium?). My doctor did mention Gatorade, but I didn't try it, because I'm also diabetic. Good to know there is a Powerade Zero. I'll check it out.

Gotta love these side effects. I've also got neuropathy in my feet, but I think that's a small price to pay for still being on this side of the grass!

GaryH
Name: GaryH
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Nov./97
Age at diagnosis: 44

Re: Muscle Cramps

by cyom22 on Wed Mar 14, 2012 12:16 am

I've been getting the cramps since I started Revlimid as maintenance 20 months ago. I even get them under my tongue and in my neck! Guess I'm talking too much!

Doctor has me also taking potassium and magnesium, along with B-6 and B-12 for neuropathy.

I haven't slept good for quite a while, but it's worth it being in remission!

cyom22

Re: Muscle Cramps

by Ron Harvot on Wed Mar 14, 2012 12:25 am

I am a cyclist and cramping is a common occurrence. When a person cramps it is often caused by a lack of electrolytes. There is a product called Endurolytes that can be purchased many places. It is made by Hammer. They are in pill form. I take these when I am cycling in warm weather and going on long rides.

Gatorade contains electrolytes but not as concentrated. If you cannot tolerate the sugar you might want to try the Endurolytes and take them with water.

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

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