[Jaylee]

Re: Muscle pain after stopping dexamethasone

by Jaylee on Sun Apr 15, 2012 4:04 pm

I just recently went off the dexamethasone after being on it for 3 weeks and I was experiencing terrible cramping in my legs today after pretty much lying around doing nothing yesterday, so it was helpful to read your post that possibly this cramping is coming from the dex. Thank you.

[Alan]

Re: Muscle pain after stopping dexamethasone

by Alan on Tue Apr 24, 2012 3:23 am

Hi, I was diagnosed with multiple myeloma in 2011, aged 52. Have been on Revlimid and dex after initial chemo and radiology of tumour.

Revlimid is a daily dose for 21 days. Back ache, rib ache, and now hip pain really slowing me down. They say my numbers are down to almost remission, but I feel like the devil has left some­thing behind to remind me that I have multiple myeloma.

I don't know enough about multiple myeloma to know whether the drugs cause the pain or if mul­tiple myeloma has left me with something permanent, but we'll keep on going. Not sure where it is all going, can't work and ride the rollercoaster each week.

[gp_locomotion1969]

Re: Muscle pain after stopping dexamethasone

by gp_locomotion1969 on Fri May 10, 2013 1:55 pm

Yes. I was taking 30 mg twice a day, and IMMEDIATELY after discontinuing it, the muscle pain and aches are totally unbearable because the reason I was taking it was to stop joint pain due to arthritis, so the 2 combined are horrible. And my job is very physical, I am a railcar technician / welder, and work has become all but impossible, but somehow I manage to get thru the day. Hope­fully this lets up soon.

[mrsv118]

Re: Muscle pain after stopping dexamethasone

by mrsv118 on Sat Sep 28, 2013 7:55 am

So glad I found this post, I thought I was going crazy. I came off dexamethasone almost two months ago and have experienced similar symptoms.

I'm only on Revlimid 10 mg. I'm having cramps / aches in my upper back, hips ,and feet. My back really bothers me at night. The hips ache when I sit or lie and then get up. My feet ache terribly after significant walking.

My back ache actually started before I came off dexamethasone, so I was thinking that this was being caused by the Revlimid. I thought the dexamethasone was masking the symptoms because of its anti inflammatory properties. Whatever the reason, it sucks.

I'm not an inactive person and don't think all this is from muscle loss.

Did you guy find it got better with time?

Thanks,
Kate

[rumnting]

Re: Muscle pain after stopping dexamethasone

by rumnting on Sat Sep 28, 2013 10:34 am

My husband has the cramping problem when he is on Revlimid. He has found taking a daily supplement of magnesium to be very helpful at keeping the cramps at bay.

[NStewart]

Re: Muscle pain after stopping dexamethasone

by NStewart on Mon Sep 30, 2013 5:18 pm

I also started taking magnesium as part of my calcium supplement. The cramping that I used to get has all but disappeared. Occasionally I'll get a little foot cramping. What a relief it has been to not be awakened throughout the night by foot, leg, back, stomach and/or hand cramping.

[Guitarnut]

Re: Muscle pain after stopping dexamethasone

by Guitarnut on Wed Oct 02, 2013 11:40 pm

I had severe muscle pain after dex. It lasted for well over a year and I still have it but to a lesser degree. It wasn't cramps. It was just a soreness in my thighs and calf muscles. It hurt to walk up and especially down stairs. It hurt for the grand kids to climb up on my lap. I couldn't find much information about it and figured I was just nuts until I saw this thread.

[Pjorg45]

Re: Muscle pain after stopping dexamethasone

by Pjorg45 on Thu Oct 03, 2013 12:12 am

I have had this during my off weeks. The pain was so bad that I had to take pain killers to sleep. It is not clear, of course, if it is because of dexamethasone withdrawal or something else.

In desperation, I went to my acupuncturist, and he was able to do some points and it went away the next day. It is still there a little bit, but, compared to what it was, it has helped a great deal. It may be worth a try.

pjorg45

[Emily]

Re: Muscle pain after stopping dexamethasone

by Emily on Sun Mar 30, 2014 6:32 am

My husband was diagnosed with stage 4 melanoma and on dabrafenib [Tafinlar] cancer pills. The doctor gave him dexamethasone to control the inflammation of his tumors. Every time that he started to get off gradually, he becomes so weak and could barely walk without crutches. Now every time we go for emergency, he was put back again on dexamethasone.

Is there anyone who was had the same experience and was able to take off successfully with dexamethasone? It seems like that the normal daily function could not go on unless he keeps on dex.

Appreciate some input.

Regards,

[kjpoppit]

Re: Muscle pain after stopping dexamethasone

by kjpoppit on Sun Mar 30, 2014 1:30 pm

This is interesting. My last dexamethasone was two weeks ago. I am done with that for now. I had 17 weeks of 40mg of dexamethasone once a week.

I don't have leg pain but lower back muscle pain. Mine happens when standing and walking. I do ok if im not on my feet to long. Working in the kitchen is killer. Anything which needs me to slightly bend over. If grocery shopping lasts too long, the pain turns into hard knots.

This started after I stopped dex. Of course I gained a lot of weight and am out of shape, although I have always been out of shape and overweight. I am now considering using those mechanical carts in the store because it is so hard. I don't want to do that. I figured it was just me.

Could this be from stopping dex?