[Nancy Shamanna]

Re: Weight gain on dexamethasone (Decadron)

by Nancy Shamanna on Thu Apr 16, 2015 9:23 am

Hi talleyho,

I agree that taking the dexamethasone changes one's metabolism somewhat and it is more difficult to maintain weight. We have to watch out for negative changes that way. Have you contacted a dietitian through your cancer centre, who might be able to help you with an eating plan?

I am trying to eat more lightly now, since really heavy foods don't agree with me anyways.

Also, exercise is a priority, and I try to get out and do something like walking, cycling, or gardening – anything that encourages movement! My family supports me in this goal and I find that they are always arranging some sort of activity that way. (They are always out jogging, running in 10 km road races, half marathons, triathlons and the like, so that is a priority with us.)

I think that with weight, making small changes gradually will show results. Good luck with this! Maybe cut out some 'empty calories' and increase activities to start out.

[ozzie]

Re: Weight gain on dexamethasone (Decadron)

by ozzie on Tue May 05, 2015 11:08 pm

I have gained 15 pounds in two weeks and cannot stop eating. I take 16 mg per day Decadron. :-[

[Nancy Shamanna]

Re: Weight gain on dexamethasone (Decadron)

by Nancy Shamanna on Wed May 06, 2015 9:35 am

Hi Ozzie,

Have you read Dr. Voorhees's comment on page 1 of this discussion thread? That seems like good advice to follow! I notice that my weight fluctuates weekly since I am just taking the dex once a week. Am trying to moderate intake of calories, especially by drinking water, tea, and other beverages that have no or low calories! It is a challenge to keep the weight the same over time!

[aussiegirl]

Re: Weight gain on dexamethasone (Decadron)

by aussiegirl on Mon May 11, 2015 7:17 pm

Sounds like my experience. I put on 30 pounds since diagnosis in December 2013. I exercised regularly by walking 4-5 times a week - but that didn't help. I finally went to a nutritionist at the cancer center, but am still having trouble loosing the weight.

I basically don't drink alcohol, tea, or coffee, haven't had ice cream in months, and have substituted rice for quinoa and pasta for spaghetti squash. We don't eat out ever. I eat at least 5-6 vegetables a day. But sometimes I think blow it and binge for a day after months of being good and not losing anything. I've started water walking 3 times a week for 1.5 hours a time and, hopefully by switching out my activity, some pounds might disappear.

I've had to buy all new clothes (so have very few to choose from now). No sign of remission yet, so I just hope I don't put on another 30 pounds in the next 2 years! Everyone tells me not to worry, that if I feel good and have no pain, the weight is a small price to pay!

[rscognam]

Re: Weight gain on dexamethasone (Decadron)

by rscognam on Thu Jul 23, 2015 7:57 pm

Good evening all,

I had a cerebral venous sinus thrombosis hemorrhage 3 gears ago. I was on Decadron (dex­a­methasone) for a few months. I gained a lot of muscle and fat and, even though I added muscle, my strength was less than when I got sick. I was running about 12 miles per week prior to being sick. When I started walking again, I would be extremely sore in my thighs.

I don't understand how I can maintain the muscle now even though I haven't lifted in 2 years. I also haven't heard anyone with similar stories about Decadron and muscle damage / overall weak­ness.

[Jonah]

Re: Weight gain on dexamethasone (Decadron)

by Jonah on Thu Jul 23, 2015 8:31 pm

Hi rscognam,

Unfortunately, steroids like dex can cause muscle weakness. The technical description of it is "steroid-induced myopathy" or "corticosteroid-induced myopathy", I believe. You'll find a lot about it by just searching on the Internet.

There have been a couple of discussions here on the forum about the subject. Here are two that I found quickly; there may be more:

https://myelomabeacon.org/forum/dexamethasone-muscle-weakness-t5312.html

https://myelomabeacon.org/forum/dexamethasone-muscle-weakness-t4758.html

Have you spoken to your doctor about the weakness you've experienced?

Good luck!

[jackie O]

Re: Weight gain on dexamethasone (Decadron)

by jackie O on Fri Jul 24, 2015 7:06 pm

i have been on and occasionally off dex for almost 12 years. The first time I gained about 25 lbs (11 kg), which I was able to get off while on a break from the dex. A couple years later, I gained about 30 lbs (14 kg), which I also managed to get rid of. Now, and for the past couple years, I have gained about 50 lbs (23 kg). I too am only about 5'2" (1.57 m); I was 5'4" (1.63 m) prior to my diagnosis.

I have gotten to a point where I am so uncomfortable in my skin. I haven't tried everything this time around, but anything I have tried has not made a dent in my weight. I lost 6 lbs on medi­fast, which was 6 weeks of shakes and awful powdered meals, and it didn't stay off for long. I keep pushing to lower my roids, but until my numbers are good enough, I wont be able to get a break, which as far as I can tell is the only chance I have to lose any substantial weight. If I do get a break, I will make a serious effort of diet and exercise.

Has anyone else gained this much weight? I know being in menopause doesn't help, nor does the fact that I am getting older. I've survived multiple myeloma for 12 years now, but my mental health is constantly run down by how terrible I look and feel.

I even asked my doctor to put me in a medically-induced coma for a month or two, thinking that would help, but he (and anyone else I've run this by) looked at me like I had 2 heads.

My weight is pushing me toward losing my mind and, as far as I know, while I'm on dex, it's impossible.

If anyone can relate to this or has any special tricks, I would love to hear them.

Thank you for listening,
jackie

[Katie May]

Re: Weight gain on dexamethasone (Decadron)

by Katie May on Tue Jan 24, 2017 8:51 am

I am going through the exact same. I lost 30 pounds when Stage IV reared its ugly head, and I had to get some weight back. Now I look like a cabbage patch kid! If my face wasn't so puffy I think I'd feel better, a little anyway. Friday is my last radiation treatment, so I have a week before I go to a convention and be with my friends, non cancer friends.

I have clothes to disguise and I'm sure no one will notice and I feel stupid even being sad about all of this. It has to be part water weight. I mean 15 pounds of fat in 2 weeks?!

Seriously?! Oh vanity could you just go on now!

[Tori]

Re: Weight gain on dexamethasone (Decadron)

by Tori on Sat Feb 25, 2017 8:57 pm

I have currently been back on dexamethasone (40 mg per week) for four weeks and have at least another 20 weeks to go of treatment .

As much as I try, I am averaging 2-3 kg (4-7 pounds) per week in weight gain.

Any advice on how to avoid the weight gain would be gladly appreciated.

Tori

[Nancy Shamanna]

Re: Weight gain on dexamethasone (Decadron)

by Nancy Shamanna on Sun Feb 26, 2017 10:22 am

Hi Tori,

I found that dexamethasone increased my appetite, and I had to try to counteract that by eating more of low calorie foods, such as veggies and fruits. Also tried to drink lots of water. My weight would fluctuate around four pounds in a week, which wasn't normal, so it had to be a problem with the steroid.

The dose I was taking was only half what you have, though. Maybe you could make an appointment at the cancer centre with a dietician or someone who knows about the drug and would have some strategies for dealing with it.

Good luck!