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

Cause of muscle pains - myeloma, Revlimid, or dex?

by fetalsono on Sun Jul 27, 2014 5:54 pm

I was started on Revlimid 3 weeks ago, 25mg + dex 20mg. The fatigue is debilitating, but I have bilateral shoulder (deltoids) pain.

I had been on Velcade - Cytoxan - dex for 5 months previously. I definitely lost some muscle mass from the dex. The shoulder pain isn't horrible but disconcerting.

I think the plan is for me to be on Revlimid for a while. Is it always taken with dex (once a week)? Or are some people just on Revlimid alone?

Thanks

fetalsono
Age at diagnosis: 66

Re: Cause of muscle pains - myeloma, Revlimid, or dex?

by Jean Ruth Howard on Tue Jul 29, 2014 10:53 pm

Are your muscle pains like spasms? Or generalized sore muscle pain?

My husband had debilitating muscle spasms/cramps before he started treatment that kind of went away on their own, so we thought it was probably due to the myeloma activity. Then he started treatment in May (Velcade, dex and Doxil) with no cramping issues, but his meds were changed last week to Revlimid and dex and he is now experiencing debilitating muscle spasms in his right flank (docs ruled out other issues). According to the Revlimid.com website, they do list muscle cramps as a side effect of Revlimid WITH dexamethasone. Dex can also cause muscle pains.

My husband started out on 25 mg of Revlimid, which I understand is quite a high dose. His doctors lowered his dose today. You might talk with your doctor about a lower dosage to see if that helps.

Here is a link to a former discussion on muscle spasms/cramping:
https://myelomabeacon.org/forum/muscle-cramps-t930.html

I hope you feel better soon.

Jean Ruth Howard
Name: Jeannie
Who do you know with myeloma?: husband
When were you/they diagnosed?: November 2012
Age at diagnosis: 47

Re: Cause of muscle pains - myeloma, Revlimid, or dex?

by Wayne K on Thu Jul 31, 2014 11:24 am

Fetalsono, when I started Revlimid, the fatigue was so bad I questioned whether or not it was worth it. By the second round I saw improvement and I'm now in my 4th round and things have improved considerably.

I still have an abnormal fatigue level, but it is something I can push through and live with.

Wayne K
Name: Wayne
Who do you know with myeloma?: Myself, my sister who passed in '95
When were you/they diagnosed?: 03/09
Age at diagnosis: 70

Re: Cause of muscle pains - myeloma, Revlimid, or dex?

by NStewart on Fri Aug 01, 2014 1:34 pm

During induction therapy I was taking 15 mg of Revlimid 21 days on/7 days off and 40 mg of Dex once a week. I had debilitating muscle spasms in my feet, legs, trunk at night that often would last up to 15 minutes and return on an hourly basis throughout the night a few nights a week. I tried all of the remedies with minimal success - tonic water did nothing, a nightly tonic of cider vinegar / honey / 8 ounces of water minimized the spasms some.

In addition to the night time spasms I frequently would develop spasms in my hands during the day. Since I was working as a PT and used my hands almost continuously during the day with hands on treatment and electronic documentation, it could be quite debilitating. It was especially bad when they happened during a hands on treatment with a patient. My doctor finally prescribed Valium 5mg PRN that I took when I could sense that the cycle of spasms was going to begin again.

When I restarted therapy after relapsing again I was again put on a 15 mg Revlimid dose, but asked to have my dex lowered to 20 mg. Occasionally I get a leg spasm at night and occasionally a hand spasm. I don't know if the lowered dex has helped or if it is one of the other, or a combination of the other, things that I started about the same time that I restarted treatment. I have added 2000 mg of vitamin D3 a day because my D3 levels were almost non-existent, and I added 400 mg of magnesium with the 500 mg of calcium that I take daily. Within a short time of adding these 2 things to my daily supplements, my muscle spasms decreased noticeably.

Talk with your oncologist and with your primary about the spasms. With the help of both of mine, I added the 2 supplements.

Nancy in Phila

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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