Crohn's Disease Forum » Treatment » Prednisone/Entocort » Permanent muscle weakness?

01-12-2015, 02:35 PM   #1
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Permanent muscle weakness?

Does anyone else have permanent muscle weakness from being on high-dose prednisone? I've been off it for nearly 2 years but never really got rid of the muscle weakness side effect. Recently after MANY tests they decided my muscle weakness really is permanent and is because of the prednisone.

Would love to know how much of my general fatigue is from that and how much from wound pain (my only other chronic complaint). I'm hoping that once I get the wound dealt with, I might feel better in general. Also, they say I can damage my muscles if I overdo it, but I want to get as fit as I can before my next surgery in June. The doctor's can't say how much is too much.

01-15-2015, 12:13 PM   #2
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Sorry I have no experience with this as my son was only on pred for a short time. Due to my son's other illness, JSpA, he does become very deconditioned at times due to flares and it seems to take more time for him to build up his strength than normal.

I hope you are able to get more I go from others on the forum who may have gone through this.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
01-15-2015, 03:05 PM   #3
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Sorry, I was up and down on Pred long-term as a kid (on 80mg for awhile until Dr noticed she wrote that in error(!).... more typically 40mg) and a few times as an adult, but I don't have any experience with lasting/permanent muscle weakness.

Pred saved my life as a kid but it is one nasty monster!!!!!!!

Do your docs know what specifically the Pred did to damage your muscles? Are there any therapies that might help? (Acupuncture jumped to mind for some reason, though like I said I haven't had this side-effect and don't know if that would help).
IBD diagnosed 1990 @ 8yrs old (current dx: Crohn’s); Blood clots 12/2009 (DVT, bilateral PE)
6MP: 50mg/day

Ethel: “So, is everything okey-dokey?” Lucy: “No, it’s inky-stinky” ~ I Love Lucy

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01-15-2015, 04:26 PM   #4
I had steroid induced myopathy last February after taking overdose intravenous steroids. It was very horrible at first up to difficult talking and difficult walking to bathroom. Iam better now but not normal. Stairs are the most difficult. Vitamin D is the only things that worked with me. Orcat least this is what i believe.

Crohn's Disease Forum » Treatment » Prednisone/Entocort » Permanent muscle weakness?
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