Prednisone and muscle pain?

General
1

Hello all!

I've read that it's unusual to get muscle pain with DM and PM, yet after I start taking Prednisone (I was given it way before diagnosis for an "unidentified" eyelid rash) I notice that my muscles hurt.

Could it be the Prednisone or the disease?

Thanks for any help you can offer! My Rheumatologist just gets quiet when I mention the Prednisone makes my muscles hurt and my family doc says it's not a side affect.

2

Oh and my CK levels were in the 11,000's last time they checked, can that cause the muscle pain?

Thanks!!

3

Hi Nichole,

I think it is the disease causing muscles pain. Prednisolon usually reduces the pain !

My CK level was 13 000 and was feeling lots of pain...

I have PM since 2001.

4

Thank you Huda, that makes me feel better. I'm trying not to pick on the Prednisone too much.

How are you feeling lately?

5

Hello Nichole,,

I don't feel bad, and i 'm not very good :)

I can do everything for myself. But i can't walk stairs, can't get up from the floor, and can't hold heavy things.

I walk 20 minutes dailly, 15 minutes cycling, and 15 minutes home excersises.

I am on Prednisolon 4 mg, Rituxan, and Prograf.

My CK was never normal, it is near the normal range !

Things are stable. Pain is only when i over do.

What about you, how do you feel now !

6

Well today my arms & legs are very weak and I think my CK or CPK #'s are still on the rise because of the pain (last I knew they were in the 11,000's), I go see the doc Thursday.

I walk here and there, but seems that there's a fine line where I need to stop and put my feet up. I'd like to try cycling, may try my neighbors bike. How do you feel when you cycle??

I'm on 60mg of Prednisone for now.

Thanks for asking! I'm happy to meet you and share too.

7

Thanks Nichole.

No Nichole i dont think trying your neighbors bike is a good idea, my bike is very different, it is like a passive excersise. it is made especially for people with special needs. i can tell u that when i put it on it starts cycling and i join cycling too, i don't work alone, we cycle together ;)

When were u diagnosed ? not a long time i think...

My CK was in the 13,000 when i was first diagnosed. Dont worry, you need to be patient.

Thanks for sharing. and, I am happy to meet u too :)

8

OOOH, ok, because thinking of jumping on her street bike really made me nervous! lol

I was diagnosed just about a week ago. Started with an eye rash in November then went down from there.

I'm slowly learning that I need to gain patience, you are right! Have a good day!

9

I have PM, BUT I also have several other conditions which are often a package deal with PM - Systemic Lupus, Psoriatic Arthritis. Joint pain definitely comes with those. Also, prednisone was killing me, literally,, my liver and kidneys were going out and my blood sugar was going up and I was dizzy all the time. So I tapered off the Prednisone in Sept last year and am taking Imuran and having IVIG infusions monthly for the myositis. My CK and aldolase have been NORMAL for the last 5 months after 2 bad years before that on Prednisone.

10

Boy, a package deal? Some of us are so lucky! I am still being "diagnosed", so I'm not sure what they will find, but it seems like the DM is the main issue. I'm very fortunate not to suffer from too many other symptoms that would make me believe I have Lupus or arthritis or anything else. I'm so sorry you do :(

So you were on Prednisone for 2 years? How long before they noticed the damage it was doing?

11

After about a year and a half, so I started the IVIG to replace it. I knew all along that the Prednisone was not being well tolerated by my body, but they don't listen till they see the results.