Hi,
I was diagnosed with multiple myeloma in December 2010, and started treatment in a clinical trial in January 2011, with Velcade, Revlimid and dexamethasone. In July '11 I started on the maintenance regimen, which was Revlimid (25 mg) and dex (40 mg) once a week. However, I was having so much trouble with sleeplessness, weight gain and other issues that my doctor began to decrease the dose of decadron. He cut it to 20 mg, but there was no real difference in my symptoms, so after discussion, we agreed that I would taper off the dex completely. I've been off it for about a month and a half now.
I'm sleeping much better and my appetite has pretty much gone back to normal, but since stopping the dex I've noticed muscle achiness/pain which I never had before - mostly pain in my legs when I try to squat down, but also some achiness in my hands, shoulders and arms. I asked the nurse practitioner about this at my appointment today (I go in once a month, but don't always see the doctor) and she said it was likely that this was a reaction to stopping the steroids (even though I did taper off them gradually.)
Have any of you who've stopped taking dex noticed this reaction, and if so, did it eventually go away?
Thanks!
Forums
Re: Muscle pain after stopping dexamethasone
I'm not sure of the cause, but I can certainly "second" your symptoms. My thinking had been that it was due to loss of muscle mass and strength, tho, and tend to still believe that as I have been off dex for half-a-year now (I was on 40 mg/day on the 21-day cycle thing ... a LOT of dex). I look forward to reading other responses to this.
There is certainly a dex-crash reality, tho.
There is certainly a dex-crash reality, tho.
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: Muscle pain after stopping dexamethasone
I noticed from your profile that you have also taken Zometa. If you still get Zometa, that is known to cause achiness, which may be more noticeable now that you're off the dex. If not, the dex may have been previously keeping some of the achiness at bay, or it may just be a reaction to coming off the dex as your NP suggests.
Are you able to exercise or stretch? I find that biking, and both dynamic and static stetching help alleviate a lot of the symptoms I otherwise experience if I'm unable to exercise or stretch for a prolonged period.
Hope you can figure out what's going on and get some relief.
Are you able to exercise or stretch? I find that biking, and both dynamic and static stetching help alleviate a lot of the symptoms I otherwise experience if I'm unable to exercise or stretch for a prolonged period.
Hope you can figure out what's going on and get some relief.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Muscle pain after stopping dexamethasone
Thanks, both of you, for such quick responses! 
Kevin, you're right, I am still taking Zometa, I get it monthly. My doctor thinks I'll probably take it for another year or so (unless I develop really uncomfortable symptoms from it, I suppose) That's a very interesting theory about the dex masking some of the achiness from the Zometa. I just got another dose of Zometa today, so I'll see if I notice any increase in the symptoms.
I have noticed that I feel better when walking around or otherwise exercising - the aches are worse when I've been sitting for a prolonged period of time (as when I'm working) or when I get up in the morning. I used to walk for exercise quite a bit, but unfortunately I managed to badly stretch a tendon in my foot a year ago (nothing to do with the multiple myeloma, just clumsiness while walking my dog) and it's still recovering. So brisk walking is problematic. But I do have a recumbent bike and I've been trying really hard to do at least 20 minutes a day on it.
I'll be interested in hearing any other experiences fellow patients may have had!
Kevin, you're right, I am still taking Zometa, I get it monthly. My doctor thinks I'll probably take it for another year or so (unless I develop really uncomfortable symptoms from it, I suppose) That's a very interesting theory about the dex masking some of the achiness from the Zometa. I just got another dose of Zometa today, so I'll see if I notice any increase in the symptoms.
I have noticed that I feel better when walking around or otherwise exercising - the aches are worse when I've been sitting for a prolonged period of time (as when I'm working) or when I get up in the morning. I used to walk for exercise quite a bit, but unfortunately I managed to badly stretch a tendon in my foot a year ago (nothing to do with the multiple myeloma, just clumsiness while walking my dog) and it's still recovering. So brisk walking is problematic. But I do have a recumbent bike and I've been trying really hard to do at least 20 minutes a day on it.
I'll be interested in hearing any other experiences fellow patients may have had!
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: Muscle pain after stopping dexamethasone
I had dex, Velcade and Revlimid. And I experienced the same symptoms. They seem to have mostly gone away. It felt like I had real sore muscles. Doc said it could be from the dex as it does kill muscles.
Harold
Harold
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packrat
Re: Muscle pain after stopping dexamethasone
I am experiencing the same muscle pains in my legs after stopping the steriod and Velcade. I have been off the steroid and Velcade for 2 weeks now and I am still having a lot of pain in my legs. The morphine sulfate does not give me any relief.
I would be interested in finding out, other than exercises, if anyone has other suggestions for relief, or how long this pain lasts after stopping the steroid and Velcade. I am now just starting the process of the stem cell procedure. Any information about that would be appreciated.
Thank you
I would be interested in finding out, other than exercises, if anyone has other suggestions for relief, or how long this pain lasts after stopping the steroid and Velcade. I am now just starting the process of the stem cell procedure. Any information about that would be appreciated.
Thank you
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RedDog - Name: Art
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: September 27, 2011
- Age at diagnosis: 51
Re: Muscle pain after stopping dexamethasone
I get muscle aches, and sometimes cramps, following Zometa infusions. My nurse practitioner suggested trying tonic water, which contatins quinine, and is supposed to help relieve those symptoms - you might want to look into that. I could not stomach the tonic water and could find nothing to mix it with that made it palatable. Consequently, I just stay very hydrated and stick with exercising and it hasn't been too bad.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Muscle pain after stopping dexamethasone
I, too, developed leg muscle pain after stopping Revlimid / dex but I never knew what caused it. This continued for some time without much relief until another doctor that I saw started me on a pain reliever called Neurontin (gabapentin). It worked the very next day. I took the drug for several weeks and then gradually went off it.
I don't know if your situation is the same or if this would work for you, but you might want to discuss it with your doctor.
Good luck with this. I know it's frustrating when doctors can't help, but I'd keep asking different people.
I don't know if your situation is the same or if this would work for you, but you might want to discuss it with your doctor.
Good luck with this. I know it's frustrating when doctors can't help, but I'd keep asking different people.
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Norm
Re: Muscle pain after stopping dexamethasone
Is it possible you could be having neuropathy? It is a common side effect from these drugs. Ask your doctor about it. My husband had similar symptoms to yours and now takes Metanx and gabapentin which helps greatly.
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Louise
Re: Muscle pain after stopping dexamethasone
A little background:
Transplant July 4, 2008; I was on a Phase III study (still am). the drugs were thalidomide (took that until peripheral neuropathy started to affect my face) and dex (until I developed diabetes, which has stopped). I am in good health.
Suffered from extreme leg cramps which froze my body for perhaps a minute. Talked to my GP, who suggested I add 1000 mg of magnesium to my daily pile of medications and vitamins. Solved the cramps.
Hope this helps,
Peter
Transplant July 4, 2008; I was on a Phase III study (still am). the drugs were thalidomide (took that until peripheral neuropathy started to affect my face) and dex (until I developed diabetes, which has stopped). I am in good health.
Suffered from extreme leg cramps which froze my body for perhaps a minute. Talked to my GP, who suggested I add 1000 mg of magnesium to my daily pile of medications and vitamins. Solved the cramps.
Hope this helps,
Peter
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Peter W
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