I have a question I just realized. Do many of you suffer from muscle weakness? I have been suffering from bad lower back muscle pain. Any standing for a short while becomes painful, let alone making a bed or working over a kitchen counter. Sitting without back support is hard too.
Is this a part of the muscle weakness, or did I get completely out of shape in 17 weeks?
Forums
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kjpoppit - Name: Kim Nelson
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept. 19th, 2013
- Age at diagnosis: 47
Re: Dexamethasone & muscle weakness
I have the same symptoms. About a month ago I started physical therapy to strengthen my muscles and improve my range of movement. Making the bed and cooking are major issues for me now.
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Anonymous
Re: Dexamethasone & muscle weakness
My daughter has had myeloma for 3 years. She has been on dex a lot and suffers from weakness in her legs. Steps are a big problem. She has started physical therapy. She is only 36 and finds it upsetting to see her 83 year old grandfather able to climb steps better than her.
She continues on dex with her treatment, so I don't know how much of an improvement there will be.
She continues on dex with her treatment, so I don't know how much of an improvement there will be.
Re: Dexamethasone & muscle weakness
Dear TerriJ.
I am so sorry to hear about your daughter. I will look online and see if I see anything about dex causing muscle wasting - or maybe someone else knows about that.
I started doing some exercises to build my strength starting about 9 months ago and even though it only takes about 5 minutes to do them, I am faithful to do them 3x per week - and I am significantly stronger.
Your daughter needs to be careful that she not put too much stress on her bones, but she might try doing some strengthening exercises?
I am so sorry to hear about your daughter. I will look online and see if I see anything about dex causing muscle wasting - or maybe someone else knows about that.
I started doing some exercises to build my strength starting about 9 months ago and even though it only takes about 5 minutes to do them, I am faithful to do them 3x per week - and I am significantly stronger.
Your daughter needs to be careful that she not put too much stress on her bones, but she might try doing some strengthening exercises?
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Dexamethasone & muscle weakness
Unfortunately, as good as dexamethasone is at fighting myeloma, it also has lots and lots of side effects, and those include muscle wasting and muscle weakness.
The FDA-approved prescribing information for the drug (PDF file) lists "loss of muscle mass" and "muscle weakness" as potential "Adverse Events" that can occur when taking dexamethasone.
I'm afraid I don't know of anything simple to do to prevent those side effects, other than making certain to get enough protein and, as Cathy suggested, doing exercise – especially exercise to maintain the strength of the muscles that appear to be losing strength.
Good luck!
The FDA-approved prescribing information for the drug (PDF file) lists "loss of muscle mass" and "muscle weakness" as potential "Adverse Events" that can occur when taking dexamethasone.
I'm afraid I don't know of anything simple to do to prevent those side effects, other than making certain to get enough protein and, as Cathy suggested, doing exercise – especially exercise to maintain the strength of the muscles that appear to be losing strength.
Good luck!
Re: Dexamethasone & muscle weakness
I'm 61 and have been on 20 mg dex weekly for one year. My 52 year old slim and healthy friend has to stop and catch her breath to keep up with me on the hills when we do our weekly hike together. I also recently went on a two-hour bike ride with hills and felt pretty good.
Although I'm not as strong as I was a few years ago, I attribute that to not riding as much as I used to. I have been lax about lifting weights and plan to start including that in my daily routine. My back does get tired at the end of the day, but I try to watch my posture and keep moving.
I don't like to read about muscle wasting and weakness. I would rather be in denial and assume that if I just do a little strength training I can keep my strength. I think that attitude helps.
Although I'm not as strong as I was a few years ago, I attribute that to not riding as much as I used to. I have been lax about lifting weights and plan to start including that in my daily routine. My back does get tired at the end of the day, but I try to watch my posture and keep moving.
I don't like to read about muscle wasting and weakness. I would rather be in denial and assume that if I just do a little strength training I can keep my strength. I think that attitude helps.
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PeggyB - Name: Peggy B
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 60
Re: Dexamethasone & muscle weakness
This is an interesting thread about another potential side effect of dexamethasone!
I am quite active, but I find that I seem to have more muscle pain after gardening, or lifting anything heavy (under 20 lbs / 9 kg), than I remember from last year. Have just been taking the 20 mg of dex for 7 months. Especially with spring gardening, one is using muscles in the back. I thought I was just not strong in those areas, but maybe the 'dex' is having an effect too, on causing muscle weakness!
I think that it is a good idea to take that into account, and try not to over-do it when working outdoors in what is supposed to be a fun activity.
I am quite active, but I find that I seem to have more muscle pain after gardening, or lifting anything heavy (under 20 lbs / 9 kg), than I remember from last year. Have just been taking the 20 mg of dex for 7 months. Especially with spring gardening, one is using muscles in the back. I thought I was just not strong in those areas, but maybe the 'dex' is having an effect too, on causing muscle weakness!
I think that it is a good idea to take that into account, and try not to over-do it when working outdoors in what is supposed to be a fun activity.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Dexamethasone & muscle weakness
I have most definitely noticed a decrease in my muscle tone. I've been taking 20 mg of dex twice a week for about 8 months now. I try to stay active, but it's just not possible for me to be as active as I was before myeloma, when I was still working, and up walking around for 8-10 hours straight during a shift. I'm wondering if I need to start talking to my doctor about physical therapy.
Muscle wasting is a well-known side effect of steroids.
Muscle wasting is a well-known side effect of steroids.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Dexamethasone & muscle weakness
I am 68 and I have been on the 20 mg dex every Wednesday, for the past 4 months. I am beginning to feel a cumulative 'tiredness' over the last few weeks. However, I do not know if that is caused by a nasty infection and high fever episode I experienced 3 weeks ago.
I wanted to relate my weekly "cyclical fatigue". I feel quite "hyper" for about 60 hours after taking the dex. However, any exercise or speedy walks make me breathless and I have mild heart palpatations. If I push myself during the first two days after the dex, I feel pretty tired for the rest of the week, too. If I waited till Saturday evenings (72+ hours after Dex) to take my 3+ mile walks at a fairly steady speed, I seem to manage well and be able to play a round of golf on the following Monday or Tuesday. I cannot manage walking with my bag for the 5 or so miles anymore, though.
I am still in my induction therapy phase (weekly Velcade) and I did try reducing my dex after consulting my oncologist. That did not work because the drowsiness caused by the Velcade (shot given usually on the Wednesday afternoons) was very noticeable on that weekend.
Also, in another discussion, Dr. Landau (a contributing myeloma expert to this forum) had mentioned that 8 or 12 mg of dex would be adequate; presumably when one is on Revlimid maintenance. Another myeloma expert independently confirmed the same. I am looking forward to that phase and hoping I can manage all my exercise and physical activities every day of the week.
Prednisone and the stronger dex are steroids after all, and their long-term side effects are pretty awful. The common and immediate side effects are well documented on various web sites that can be accessed by any search engine. One of them (Medline) mentions that one may experience muscle weakness and recommends 'call your doctor immediately'.
K_Shash
I wanted to relate my weekly "cyclical fatigue". I feel quite "hyper" for about 60 hours after taking the dex. However, any exercise or speedy walks make me breathless and I have mild heart palpatations. If I push myself during the first two days after the dex, I feel pretty tired for the rest of the week, too. If I waited till Saturday evenings (72+ hours after Dex) to take my 3+ mile walks at a fairly steady speed, I seem to manage well and be able to play a round of golf on the following Monday or Tuesday. I cannot manage walking with my bag for the 5 or so miles anymore, though.
I am still in my induction therapy phase (weekly Velcade) and I did try reducing my dex after consulting my oncologist. That did not work because the drowsiness caused by the Velcade (shot given usually on the Wednesday afternoons) was very noticeable on that weekend.
Also, in another discussion, Dr. Landau (a contributing myeloma expert to this forum) had mentioned that 8 or 12 mg of dex would be adequate; presumably when one is on Revlimid maintenance. Another myeloma expert independently confirmed the same. I am looking forward to that phase and hoping I can manage all my exercise and physical activities every day of the week.
Prednisone and the stronger dex are steroids after all, and their long-term side effects are pretty awful. The common and immediate side effects are well documented on various web sites that can be accessed by any search engine. One of them (Medline) mentions that one may experience muscle weakness and recommends 'call your doctor immediately'.
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Dexamethasone & muscle weakness
Is it a side effect of dex? Or everything that we are going through collectively that is wasting away muscle?
I too noticed much weakness when I was on dex, but I was also having chemo at the same time. So the dex made me have an insatiable appetite, and the chemo gave me fatigue to the point of inactivity. So the result was eat far too much, do too little activity, put on heaps of weight, and muscles waste away. I don't believe it is wholly a dex issue but a culmination of it all. Add getting older into the equation and, well, we are ill as well. Can we really expect not to have these deteriorations?
Nonetheless, if you can exercise, it should help. Not only regain a little muscle, but lose a bit of fat and generally feel a little better.
That's my two cents ...
Vicki
I too noticed much weakness when I was on dex, but I was also having chemo at the same time. So the dex made me have an insatiable appetite, and the chemo gave me fatigue to the point of inactivity. So the result was eat far too much, do too little activity, put on heaps of weight, and muscles waste away. I don't believe it is wholly a dex issue but a culmination of it all. Add getting older into the equation and, well, we are ill as well. Can we really expect not to have these deteriorations?
Nonetheless, if you can exercise, it should help. Not only regain a little muscle, but lose a bit of fat and generally feel a little better.
That's my two cents ...
Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
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