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

Re: Dexamethasone & muscle weakness

by NStewart on Wed Apr 22, 2015 11:59 am

Dex does have an effect on the large muscles of the thighs and shoulders in particular. So, some of the muscle tiredness / pain in the back from doing lifting types of activities can be from the fact that you are using back muscles more than leg muscles to do the work that leg muscles should be doing. But, as Vicki says, all of the things that are part of our treatment and disease also contribute to the increased fatigue, decreased endurance, and muscle weakness.

Trying to be as active as possible with exercise and life are the best antidotes to all of these issues. Paying attention to what level of activity lays you low for longer than a day is really im­portant. Start slow and low and gradually build up your strength and endurance. Doing this will help your fatigue level to some extent.

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

Re: Dexamethasone & muscle weakness

by Christina on Wed Apr 22, 2015 12:20 pm

I've been on and off dex for over 4 years, almost 5. I definitely have had muscle weakness, mostly in my legs. I walk every day, but not as much as I'd like.

I'm not sure what there really is to do about it but keep walking.

Christina
Name: Christina
When were you/they diagnosed?: June2005
Age at diagnosis: 52

Re: Dexamethasone & muscle weakness

by LibbyC on Wed Apr 22, 2015 8:50 pm

One of the side effects of dex is muscle weakness. I certainly noticed my muscle weakness, as did one of my GP friends who wanted to show me to her medical students so that they could see some of the side effects of dex. At the height of the weakness, I couldn't walk down my back steps unaided.

I have been on a number of different chemo regimen that have included steroids. Some have affected me more than others. One included 40 mg dex for 4 days then 10 days off. I was on that for ~5 months. Other treatments included 40 mg dex / week.

All of the above happened more than 4 years ago and now I almost skip down the back steps.

LibbyC
Name: LibbyC
Who do you know with myeloma?: myself
When were you/they diagnosed?: 2009
Age at diagnosis: 43

Re: Dexamethasone & muscle weakness

by blackcronos3000 on Mon Aug 31, 2015 3:07 pm

Dexamethasone ate all my muscle mass within two to three months. I can't walk very far now, maximum 10 minutes, and I am very tired and breathless. I was somebody who could walk 6 to 8 miles per day and do a full work out with weights, I was in good form. Now I have a round belly, and look very out of shape. Muscle has been replaced with droopy skin all over my body.

Thankfully I am on cycle number 8 and will have the cleaning process and transplant after. I don't like the way dexamethasone affects my mind, and also I was paranoid at the start with the high doses.

Now they have reduced the dose but it has done so much damage to me, but I have to take this medicine. I am very forgetful, I can become rude and aggressive. Also the dexamethasone has made me diabetic.

blackcronos3000
Name: Blackcronos3000
Who do you know with myeloma?: Me
When were you/they diagnosed?: November 2014 but i had been ill 2 yrs
Age at diagnosis: 48

Re: Dexamethasone & muscle weakness

by mathineer on Tue Sep 01, 2015 10:05 am

My husband was diagnosed on August 20, 2015. His symptoms were rib pain – which the doctor thought was from a bad cough and possibly cracking ribs. An x-ray led to a CT scan which showed multiple lytic lesions. All the bloodwork confirmed the multiple myeloma diagnosis.

He will be starting dexamethasone and Revlimid next week and is concerned about losing muscle tone. The doctor told him no more twisting (teeing off in golf, etc) and not to lift anything heavy. We would like to know what muscle building exercises are recommended.

mathineer

Re: Dexamethasone & muscle weakness

by JPC on Tue Sep 01, 2015 3:43 pm

Hello Math:

I am guessing that your doctor would advise not to risk any type of impact activity for the near term with the concern of cracked or broken bones (which many patients do in fact have).

There is a term used in newly diagnosed multiple myeloma, that is whether or not you "respond" to the therapy, or whether or not you are a "responder". Most people get a pretty decent response to initial therapy, and I hope that your husband does. If he does respond, then the lesions will clear up, and may heal. At that point, you might start looking at renewing physical activities.

My own personal opinion is that the impact on muscle tone from dex will not occur in the near term. For most people, I think it will probably be only if you happen to be on it constantly for greater than a year or more. The more immediate impact on muscle tone will be the reduced activity. If your husband did not have bone lesions, then he would still have issues from the myeloma and the medications causing fatigue and nausea (possibly).

When he is cleared for it, I would suggest getting a prescription for physical therapy, preferably with a PT with specific experience in this area. It occurred to us that for my wife's recovery from an ASCT that occurred in February of this year, to get a PT prescription. She loves it, and it has helped her toward getting back to normal greatly.

Good luck.

JPC
Name: JPC

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