Peggy

New Diagnosis - Polymyositis

14 posts in this topic

After my appointment last week with my rheumatologist doctor, which I still haven't received the results of the heart and lung tests, I did however receive another diagnosis. I now also have Polymyositis in addition to Systemic Sclero, Sjogren's, Raynauds, and now this. Does anyone else have this? This explains why my muscles hurt so bad and have to depend so much on painkillers.

 

The only good thing about it is that it will hopefully get the insurance company to now approve the IVIG therapy being this is the criteria they need. I am in the middle of appealing their denial and please cross your fingers and send good thoughts my way that it goes through as I am running out of treatment options.

 

Thanks and warm hugs.

 

Peggy

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Peggy,

sorry to hear about yet another diagnosis. I was initially diagnosed with MCTD consisting of SSc and polymyositis. As I mentioned in another thread, I got my approval for IVIg because of the poly, not the SSc. Hope it works for you as well.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello,

 

Can you tell me what tests your doctors used to diagnose the polymyositis? I have often believed I have this as well. My muscles, especially in my thighs hurt so much that even a light touch is very painful. I know this is not normal. And could you explain the treatment you are getting for this.

 

Thanks so much,

Tammy

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Hi, Peggy and Tammy

 

Sorry to hear about your new diagnosis, Peggy and that you feel you might also have polymyositis, Tammy.

 

There is quite a lot to read on our medical page for Polymositis, including several patient stories. Hope these links are of some help.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Peggy and Tammy,

When you review the link the Jefa provided, you'll see that the primary symptom for polymyositis (PM) is muscle weakness - primarily those muscles between the knees and the neck. Difficulty getting up out of a chair, raising your arms to wash your hair and lifting your head off a pillow - can all be indicators of PM. Some people experience pain, but it's not the most common symptom. When I was diagnosed, the only pain I was experiencing at the time was in my left knee. I've never really experienced muscle pain due to PM. If I push myself too much physically, my muscles will be sore for a few days, but never "painful". But like scleroderma, everyone is different. Your pain could also be related to the scleroderma, for which pain is many times a symptom.

 

Polymyositis is diagnosed with a bloodtest for your muscle enzymes (CPK or CK) and a muscle biopsy. The normal CPK is below 200. Treatment for polymyositis is similar to scleroderma since it is another connective tissue disease. The first line treatment is normally high dose prednisone, but if you have scleroderma, then immunosuppressants are used. For me, the immunosuppressants only did so much so we had to add the IVIg. It's the only thing that has been able to put my CPK in the normal range.

 

I hope you both find relief for your pain.

 

Gentle Hugs to you both,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Peggy,

I'm sorry to hear about your new diagnosis. I do hope your doctors will be able to help you with it.

 

Reading all of this, the links and about what Janey said, made me think I may have this. I'll add that question to my list for my next appt.

 

Hang in there,


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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My childhood friend was just diagnosed with polymyositis. It just adds to the amount of autoimmune diseases in our age category in a town that's one mile square. As in previous posts, I have pointed out that our kids ballfields have been closed down due to DEP findings in addition to a new preschool which has not opened since September because of DEP findings.


Tru

 

It is what it is...........

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Peggy,

I am struggling with this very issue. My CPK has been very high and getting higher from losing muscle. My sed rate is also very high, all markers of inflammation. I cannot walk more than a few feet without resting anymore and just getting out of a chair is an ordeal. My rheumatologist is not sure whether the PM is due to inflammation or to fibrosis, and as Janey said the muscle biopsy is how to know. We're experimenting with lowering my prednisone dose to see if my CPK increases significantly. If it does, it's probably due to inflammation. Otherwise it is due to the fibrosis. Catch-22, isn't it? I'm not thrilled with the idea of a muscle biopsy since treating the symptoms are what is important, knowing the underlying cause in my case isn't much help. Prednisone is the only immunosuppressant I'm taking at the moment and I am desperate to get off it but chances are I'm stuck with it. I'm seeing the rheumatologist on Monday to review bloodwork I just had done. Should be interesting. He's suggested IvIg to me and has been trying to get me to take Cellcept but I'm refusing it all since I don't tolerate most immunosuppressants and would rather take my chances with the fatigue and muscle pain, at least for the time being.

I hope you get approval for the IvIg and that it eases your symptoms. PM is a kicker and no joke to live with. It seems especially hard for other people to understand. I tell them it feels like I ran a triathalon, every day; even in my sleep my muscles wake me up.

Warmth helps me a lot. I sit under a heated blanket almost all the time. Also it is important to avoid overdoing things, since it makes the muscles more inflamed and spill more enzymes.... some people have told me I need to exercise to build up muscle! Oh well. We deal with the stinkiness of this disease whatever way we can, and thankfully we have each other here on this message board. You are not alone!

Have a lovely weekend, Mary


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Mary you hit it right on the mark! The muscles are so sore all of the time that if I try to do things I really pay for it. Everyone says I should exercise but I know if I did that I would be in such agony it would be unbelievable. I am blessed that I have the pain patches because without them I don't know what I'd do. My CPK has been off the chart for over 2 years and it took this long to get this diagnosis, just like it took them over a year to find the sclero and sjogren's. I am hoping that the IVIG appeal will in fact go through and be approved.

 

Thanks and warm hugs.

 

Peggy

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Hi Mary

 

I was diagnosed with polymyositis on March 3, 2008 after many many doctors and lab appts, I am now under the care of a neurology muscle specialist in Augusta GA, so far it seems like I am getting the treatment I need, 40 mg prednisone and 150 imuran daily. The prednisone helped me immediately, I was very fatigued, leg and arm muscles hurt real bad. I did have a muscle biopsy which wasn't as bad as I expected.

I think the EEG test was worse.

 

I am surprised your dr does not have you on Imuran, I have talked with another PM patient that was on Celcep but was changed to Imuran, although he tells me that Imuran takes 2-3 mos to work.

 

My dr told me NO EXERCISE, whoever is telling you to exercise is wrong. As soon as I do a little something, it catches up with me and I feel weak.

 

Please let me know how you are doing at this time

 

Tricia

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Peggy & Tammy

 

I hope you both find the answers you need soon...


Sending good wishes your way!

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Tricia,

Welcome! I'm sorry to read about your PM diagnosis. I hope the Imuran has got it under control. Is your CPK coming down? When I had to come off methotrexate I was put on Imuran but couldn't tolerate it. I've been on IVIg now for 2 years and it has been the only thing that has been able to get my CPK back to normal.

 

Peggy,

Tricia's right that you shouldn't do weight bearing exercise when the CPK is high, but you still need to keep the muscles moving so they won't atrophy. I found the rubber bands work great as long as I keep them loose enough. The warning that my PT gave me was if you are sore the next day - you did too much. When exercising, a good immune system acts to repair muscle after a workout However, since our immune systems work backwards, when we strain muscle through exercise or overexertion, our immune system destroys the healthy cells making us feel even worse. So keep moving, just limit the time and intensity of the movement. Easier said than done (the keep moving part. :huh: )

 

Weren't you approved for IVIg? When's your first treatment?

 

Hugs to all,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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