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Darzalex and muscle cramps
My husband has had Daralex for almost 8 weeks now. He is experiencing horrible muscle cramps. A few nights he was not able to sleep at all and the cramp would not go away. Is this normal with Darzalex, and what can be done about it?
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noway - Name: Noway
- Who do you know with myeloma?: Husband
- Age at diagnosis: 56
Re: Darzalex and muscle cramps
I wish I had any advice for you, but rather I ask that you fill us in if you find any solution to this problem. My husband had some muscle cramps with Kyprolis (carfilzomib), Revlimid, and dexamethasone last summer, but they weren't totally debilitating. He was particularly frustrated because he works with his hands and they affected his hands, so he couldn't put in long days. But, he wasn't supposed to be working that hard anyway.
However, when he started Darzalex, Revlimid, and dexamethasone last fall, the cramps became significantly worse. There were times he was just sitting on the couch clutching some muscle, unable to move or talk or do anything.
They prescribed a muscle relaxant, but it did nothing. Just when I was thinking the situation could not go on, he stopped that treatment in preparation for the stem cell transplant, and the cramping completely disappeared after slowly tapering off.
He's back on the Darzalex regimen again, and the cramping problem has not come on nearly as quick or bad, but it has happened some and I hope it doesn't get so bad again.
I have found that muscle cramping is listed as a possible (but not common) side effect from both Revlimid and Darzalex, so I don't know which one to blame, but I suspect it's the combination because he did have it with Revlimid before, but not so severe.
Perhaps his body is getting more used to the regimen, but another possibility is that his oncologist has been urging him to drink significantly more water, and after 15 years of me nagging him about that to no avail, he is finally making more of an effort. So it could be that his chronic dehydration was aggravating the cramps. It certainly couldn't hurt to make sure one is well-hydrated to rule that cause out. Hope your husband is able to find some relief.
However, when he started Darzalex, Revlimid, and dexamethasone last fall, the cramps became significantly worse. There were times he was just sitting on the couch clutching some muscle, unable to move or talk or do anything.
They prescribed a muscle relaxant, but it did nothing. Just when I was thinking the situation could not go on, he stopped that treatment in preparation for the stem cell transplant, and the cramping completely disappeared after slowly tapering off.
He's back on the Darzalex regimen again, and the cramping problem has not come on nearly as quick or bad, but it has happened some and I hope it doesn't get so bad again.
I have found that muscle cramping is listed as a possible (but not common) side effect from both Revlimid and Darzalex, so I don't know which one to blame, but I suspect it's the combination because he did have it with Revlimid before, but not so severe.
Perhaps his body is getting more used to the regimen, but another possibility is that his oncologist has been urging him to drink significantly more water, and after 15 years of me nagging him about that to no avail, he is finally making more of an effort. So it could be that his chronic dehydration was aggravating the cramps. It certainly couldn't hurt to make sure one is well-hydrated to rule that cause out. Hope your husband is able to find some relief.
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Darzalex and muscle cramps
I have not heard of Darzalex causing cramps. I think Revlimid, and to some extent dex, are the myeloma treatments most known for causing cramps. You can see this if you go through the existing discussions here in the forum about cramps and cramping:
https://myelomabeacon.org/forum/search.php?keywords=cramp+cramps+cramping&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
In those discussions, you'll find lots of suggested remedies, ranging from pickle juice to tonic water to mineral supplements, and I think a lot of the suggestions are worth pursuing.
Cheers!
https://myelomabeacon.org/forum/search.php?keywords=cramp+cramps+cramping&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
In those discussions, you'll find lots of suggested remedies, ranging from pickle juice to tonic water to mineral supplements, and I think a lot of the suggestions are worth pursuing.
Cheers!
Re: Darzalex and muscle cramps
I don't know if this is a coincidence, but I just realized that the one thing that changed between the last time my husband was on the Darzalex regimen and this time is that last time they were giving him oral dexamethasone, and this time it has been via IV every week. Until today. Today was the first time he switched to every-other-week infusions (after eight weeks of every week), so he had to take his weekly dex in pill form. He noticed a marked difference with cramping and had a hard time at work. He was sure the pills I had put in his compartment were something different, or a much higher dosage, because he felt so different, but it was the exact same dosage (40 mg) that he had in the IV. I will be watching for the next several weeks to see if this continues, because if the cramps get too debilitating, at some point it might be worth it to bring up the idea of him going in and getting his dex via IV.
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mplsterrapin - Name: Ari
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Fall 2015
- Age at diagnosis: 54
Re: Darzalex and muscle cramps
I had my first infusion of Darzalex (daratumumab) last Friday, June 30. I had no infusion reactions and have felt quite good since then. Except that I've developed cramping in my feet and legs overnight. They come in about 2 hour cycles, or when I change position in bed, and last several minutes each time. I have 10/10 pain with them. Last night I noticed that the cramps were in the same distribution that peripheral neuropathy would be.
I've been taking 400 mg of magnesium for cramping in my body since I started with Revlimid. That was the only thing that seemed to control the cramping. But, I'm not taking Revlimid any more. I also take potassium, vitamin D3, calcium, and a multivitamin every day.
In any case, I'm also interested if this is a common side effect of Darzalex, and what can be done about it. I'll definitely be talking to my oncologist and NP this week about it.
Thanks,
Nancy in Phila
I've been taking 400 mg of magnesium for cramping in my body since I started with Revlimid. That was the only thing that seemed to control the cramping. But, I'm not taking Revlimid any more. I also take potassium, vitamin D3, calcium, and a multivitamin every day.
In any case, I'm also interested if this is a common side effect of Darzalex, and what can be done about it. I'll definitely be talking to my oncologist and NP this week about it.
Thanks,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Darzalex and muscle cramps
Dear Noway,
My husband will be receiving his first Darzalex in few minutes. He had strong cramps with Revlimid (and it was not effective against multiple myeloma) and has them also with pomalidomide (Pomalyst, Imnovid). I hope Darzalex will not make things worse.
The threads mentioned above by Ian are worth looking at. They have many different suggestions. It is worth trying them but being aware that not each would necessarily suit your husband needs (mine couldn't stand the vinegar, but found the tonic useful). Some trial and error is needed. Being well, really well, hydrated is key to reduce the likelihood of cramps, but, more in general, for any multiple myeloma patient, as the disease tends to harm the kidneys.
Wishing you good luck,
Ivory
My husband will be receiving his first Darzalex in few minutes. He had strong cramps with Revlimid (and it was not effective against multiple myeloma) and has them also with pomalidomide (Pomalyst, Imnovid). I hope Darzalex will not make things worse.
The threads mentioned above by Ian are worth looking at. They have many different suggestions. It is worth trying them but being aware that not each would necessarily suit your husband needs (mine couldn't stand the vinegar, but found the tonic useful). Some trial and error is needed. Being well, really well, hydrated is key to reduce the likelihood of cramps, but, more in general, for any multiple myeloma patient, as the disease tends to harm the kidneys.
Wishing you good luck,
Ivory
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Ivory - Name: Ivory
- Who do you know with myeloma?: Dear husband, Luc
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Darzalex and muscle cramps
I have myeloma and suffer the muscle cramps. I have been taking 50 mg of magnesium twice a day and the cramps are held at bay. That's all I know. By the way, I have stage 3B myeloma.
Re: Darzalex and muscle cramps
I'm now had 3 of 8 biweekly infusions of Darzalex. The last time I posted I had just started the weekly infusions and the muscle spasms in my legs were intense and intolerable. Since then, I started getting acupuncture to help control the spasms. It worked almost immediately. The first week of treatment I still was getting spasms, but fewer of them, much shorter duration, and much less intense. I had 9 weekly treatments and the spasms are all but gone. I do get an occasional one that lasts a few seconds.
I will now be going for acupuncture treatment once a month for a few months and then occasionally for a booster. I'm so pleased with my response to the acupuncture because it has meant not having to add a medication for the spasms.
Nancy in Phila
I will now be going for acupuncture treatment once a month for a few months and then occasionally for a booster. I'm so pleased with my response to the acupuncture because it has meant not having to add a medication for the spasms.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
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