Polymyositis

[Willis]

I've been getting weaker and weaker since early this year (i.e., Jan 2013) and now can barely walk. I will be in a wheelchair as soon as I can get one ordered and delivered. After seeing half a dozen doctors of various specialties they still can't make a definitive diagnosis. But it seems the "best" candidate is Polymyositis. Anyone have experience with this?

http://www.mayoclinic.com/health/polymyositis/DS00334

"Polymyositis (pol-e-mi-o-SI-tis) is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement. Medically, polymyositis is classified as a chronic inflammatory myopathy — one of only three such diseases. Polymyositis can occur at any age, but it mostly affects adults in their 30s, 40s or 50s. It's more common in blacks than in whites, and women are affected more often than men are. Polymyositis signs and symptoms usually develop gradually, over weeks or months."



 

[MaryD]

That sound awfully scary, Willis.  I hope it's something else.  Is it muscle-wasting or muscle pain?

[Jean]

Oh wow Willis!!!! Is this connected to the kidney disease?

[obsidianom]

Do you have LYME disease where you live? I would ask about that too.
Have your doctors tried prednisone or any other type cortico steroid?  Steroids can be very beneficial as polymyositis is an auto immune disorder.
Are you seeing a rheumatologist?
Good luck and hang in there!

[Swamp Gator]

I am sorry you are dealing with this. I hope they find out it is not what they think it may be and is actually something treatable.

SG

[Willis]

Do you have LYME disease where you live? I would ask about that too.
Have your doctors tried prednisone or any other type cortico steroid?  Steroids can be very beneficial as polymyositis is an auto immune disorder.
Are you seeing a rheumatologist?
Good luck and hang in there!

I was in the hospital twice for this and have been seeing a rheumatologist. I was on 60mg/day prednisone and that was just enough to get by at first. At one point my WBC was appx 45000. Naturally, the docs were worried about cancer so I was sent to the cancer center to be evaluated by a hematologist. All cancer tests proved negative. I was also evaluated by a neurologist and all nerve function is normal. All the docs agreed that after awhile high doses of prednisone can itself cause a high WBC so I'm tapering off the dose and now down to 30mg/day. That stuff is addictive and for a day or two after each "step down" I definitely feel lousy, but then I do feel better except for my legs. I can walk with a cane for perhaps 100 yards--very slowly--but that's about it. Sitting I'm OK so I can still work since I sit at a desk. But I've been shopping for a wheelchair which when I'm out and about should keep e from getting so tired.

The diagnosis of polymyositis is tentative and I will need to have a muscle biopsy. The rheumatologist suggested I go to the Mayo Clinic but even with Medicare it will be expensive. So I'm going to get as many tests done near home as possible (mostly paid for by Medicare) unless there's no alternatives. If I can get a more definite diagnosis then the doc said there are treatments, but the wrong treatment isn't going to help and could make things worse.

As for any relation to my dialysis...about Dec 2012 I was a "guinea pig" for the use of Baxter's Extraneal (icodextrin) for my day fill. It was soon after that when I started getting a negative reaction. Very subtle at first but then progressively worse until I landed in the hospital. After stopping the icodextrin the acute symptoms went away (clue #1), but the inflammation was still so bad that the first time I was taken off the prednisone (about a month later) I wound up in the hospital again. It was perhaps the most painful night of my life while waiting through the night for the hospital to find my doctor (neph) who was finally contacted after about 6 hours and ordered me back on the prednisone. Within about 2 hours most of the pain was gone and I could at least sit up on my own.

It could just be coincidence that these problems started at the same time I started using the icodextrin, but I definitely DID have acute symptoms like difficulty swallowing, throwing up, loss of appetite, and general malaise which when reading the fine print on the icodextrin are shown as possible side effects. Those symptoms all went away when I stopped using it--except some damage has bee done and seems to have triggered this autoimmune response.

[galvo]

I'm sorry for your troubles, Willis.

[obsidianom]

Its not that prednisone is addictive, but it shuts down the adrenal gland production of cortisol so tapering it SLOWELY is critical. I have my patients taper by no more than 5mg every 5 days. This slow taper makes it much easier to tolerate and safer . The adrenal gland needs time to get back to production via the axis to the brain.

[Willis]

Its not that prednisone is addictive, but it shuts down the adrenal gland production of cortisol so tapering it SLOWELY is critical. I have my patients taper by no more than 5mg every 5 days. This slow taper makes it much easier to tolerate and safer . The adrenal gland needs time to get back to production via the axis to the brain.

Thanks for that clarification. As a layman I have to make certain assumptions unless I specifically ask--and nowadays it seems doctors try not to answer unasked questions. I always avoided medical-related topics until I had to learn for myself so I could be proactive in my own care.

[Deanne]

I was on prednisone in the past and it caused severe muscle wasting for me. Within two weeks of starting it, I started having trouble. Someone gently bumped into me and it was enough to put me flat on my back on the floor unable to get up by myself. I had to use my hands to lift my legs in and out of the car and to get in and out of bed. i had to unpack grocery bags in the car and carry only a couple things in at a time. i had trouble stepping up over curbs. it took a few months after discontinuing prednisone to regain my strength. Is it possible that prednisone is doing this to you, too? I hope you get to the bottom of it.

[Grumpy-1]

Wow !!!!!!  I thought I was the only one with this problem.  Shortly after I started dialysis, I lost 75% of my leg strength.  Dr did the needle/electrical test - all tested some what normal.  But I still can't get out of a chair without using my arms. Can't go up stairs without using arms.    Thought I was just going to have to live with it (like most the stuff associated with kidney failure and dialysis) But now will be pinging the Dr about this.  THANKS to all who posted.  Grumpy

[obsidianom]

You need to talk to your doc about the aleve. That is not a good idea with kdney disease. Also RA can weaken muscles.
I dont mean to be too preachy but drugs like Aleve and Ibuprofen ( motrin) are NSAID class drugs and extremely danderous to weakened kidneys. Even for healthy kidneys they can cause issues in some cases. I would hate to see anyone take an over the counter medicine like these and assume it is safe. Always check with your nephrologist.

[MooseMom]

Willis, I am really sorry to read that you are having these problems.  It seems you have a bit of a mystery on your hands.  I'm very curious to hear if you ever get a definitive diagnosis.