Question RE: Dex update

Neither had I Rob 16, however !!!!!!!!!

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First off Thank you Rob16 and mrsb04

Wasn't sure your response was correct because I had forgotten to mention the pain I was having in the arm. So I read the link mrsb04 posted then did a quick google search for Corticosteriod induced myopathy. Apparently it can cause pain. More often just weakness but pain can happen too.

I'm sensitive to medications and side effects are usually magnified in me. (if it says may cause I know it will happen) When the doctor said my arm was a side effect of the dex I figured he said that because he could not find any other cause. I didn't realize it was actually a side effect.

This makes me smile for 2 reasons:
1. It's not my imagination
2. a quote from my sister "only you would have that happen"! hehehe

PS: mrsb04 give yourself a hug from me!

Follow up from hospital cause my arm is still giving me trouble 1 week later. Family doctor says he highly doubts it was the steroid as it doesn't usually cause unilateral swelling. Swelling would be in both arms.

He feels there is soft tissue injury. He basically said I had injured my arm?? How I have no idea I'm stumped because I know I didn't bang it, twist it, or do a new activity with it.

He states normally he'd recommend NSAID's but because of ITP he can't. So he prescribed me PENSAID (sp) a topical liquid to apply. Said it should help heal without affecting my platelets.

So now I have no idea what to think or do. Do I just go with doctor #1 and blame the dexamethasone. Or go with doctor #2 and convince myself I injured my arm even though I don't remember doing anything?? UGH

I am pretty sure that steroid myopathy only occurs after a lengthy time on steroids. I've been tested quite a few times since I have muscle weakness and have been on steroids for 10 years. It would more than likely affect both arms and both legs....it doesn't just pick one limb.

A topical? Wow, the things they do when they have no idea what to do.

I hope it clears up fast, Julia, whatever it is. That is a very strange thing to happen.

I woke up one morning about three years ago and couldn't use my left hand. The weakness was so bad that I could barely move my fingers. Couldn't even rip off a piece of toilet paper with that hand. No swelling, no pain. If I had gone to the Dr., they wouldn't have had a clue. I get so used to weird things like that I usually don't even go to the Dr. Bad habit.

Anyway, two days later, I noticed a burning sensation in my upper arm. Finally that night around midnight, I took a look at it in the mirror - it was close to my arm pit so I couldn't see it without the mirror. Anyway, I saw a small line of blisters and knew. Shingles! It hit the nerve and muscle before the rash even came out. Went to the ER and got the anti-virals, then spent four months doing PT. It never did come back fully, but I'm losing muscle in both hands now (for about a year) with no known cause (yet). Need to get the Neurologist still....too much going on to follow up.

Is it getting better?

Julia, I am quite hindered by shoulder surgery last monday, but i do want to comment, though without the usual citations. From my reading I have learned that there is an acute version of steroid myopathy, occurring at higher dosage, especially with a specific class of steroid which includes dexamethasone. Apparently this is not so uncommon when high dose steroids are used to treat asthma.

If you are planning more rounds of HD-Dex you may want to explore this possibility first.

.
Sandi - After reading your post I went straight to the bathroom to look for signs of shingles. No signs this no way feels like when I had shingles on my back. Every day is a little better I can squeeze the toothpaste but still not where i'd like it to be. I am concerned with using the Pensaid as it is an NSAID's only topical so I'm only doing 10 drops BID instead of the 40 or 50 mentioned to me.

Rob16 - Here's hoping your shoulder heals in a timely manner. must be very painful!
After you and mrsb04 posted I started reading and have found the same info. Also found info referring to it affecting one extremity. When I see the hematologist on the 24th I'm going to ask her for an opinion and her experience with HDD causing steroid induced myopathy.

Words the last 2 doctor's used: "usually" "typically" making me wonder if I'm not just atypical. I'm beginning to think Ockham's razor is my answer.