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Old 06-13-2010, 12:30 PM   #1
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TRIED OLD MAN HB User
looking

I am 40yrs old and have had polymyositis since 2005. I am looking for some one else with this if anyone can help please reply
thanks for your help

Last edited by moderator2; 06-13-2010 at 01:23 PM. Reason: please do not post your email address

 
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Old 07-07-2010, 05:58 PM   #2
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will41 HB User
Re: looking

i'm 41 and diognosed in 2006. i've taken prednisone, imuran, celcept, sulfazine, in the past few years as per my ruematoligist. be patient i know my spelling is bad. blood work normalized,however i never got back 100%. i still feel pain in my joints. i exersize religiously and i am probably in the best shape of my life. i honestly don't know if it's helped me. i feel worse when it gets hummid outside. it's hard to give an accurate history becuase of all the changes experienced durring treatment. right now i am on methotrexate once a week and folic acid every day exept for the day i take the methotrexate. it's the first summer that i have not been on prednisone since 2006 and also the most painful.

Last edited by will41; 07-07-2010 at 08:43 PM.

 
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Old 07-07-2010, 08:37 PM   #3
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Re: looking

I have polymyositis. In the spring of 2006 i woke up with my eyes swollen shut. My dr. Said that it was due to alleries and gave me a script for it. It didn't go away and after a week of down playing it my wife dug into me like an alabama tick and went back with me to the dr. And did the same to him. He prescribed a z-pack of prednisone. It immedeately fixed the problem. About a week later i spent an extended period of time at work crouched down. The next day my legs felt very fatigued as i was not in great physical shape to speak of. The feeling in my legs however did not improve. Every day i woke up it felt as if i had done a leg work out the day before for the first time in years. My ankles became sore. My joints became stiff. For example if i were to stay still for any period of time i could feel my joints crack. That crack was very painful. I felt debilitated so that i talked to my boss to place on modified duty temporarily til i got past this. While on this modified duty i found myself using a computer often (something i never do). Over the next day or two i started to feel the same muscle fatigue that was in my legs, in my index finger. I figued out it was from using the mouse on the computer. My right ankle felt the same way from driving, i even felt it in my jaw from chewing. Eventually i had it all over. The pain was so bad that any movement in my sleep would wake me up. It was particularly bad in my neck. I tried to hide it from my wife who was busy enough with our one year old boy. I eventually got so frustrated that i blamed it on the prednisone z-pack. I used that as an excuse to vent out those frustrations. As a result i layed a guilt trip on my wife who i knew would leave no stone unterned to find a way to help me. In fact she found this blog for me wile researching pm for me. She took me to a rhuematoligist that she knew of. After a consultatation he told me to get back on the prednisone, 40 mg to be exact. It made me very edgie. I would get blinded with rage and after a 6 month run of not smoking, a habbit i had for twenty years i went back. But i stayed on the prednisone becuase it made the symptoms go away. Bloodwork showed my cpk at 2500. A muscle biopsy later, it became offical. Dr. Told me pm was treatable. I can't remember everthing i've taken. At first though he put me on sulindac 200mg i believe that in case of any infection that i receive to stop taking it right away. My cpk was normal by autum. He then had me on cellcept 500mg, sulazine 500mg, 150mg of imuran daily. Six months after starting, i quit smoking again. I began to exersize. Running, pull-ups, push ups, sit-ups, against the doctor's advise. I'm not telling any one to do that but i just felt like could and that i needed to. I got into the best shape of my life. However, covering my symptoms with prednisone. Hummid weather is the hardest. I always aimed to illiminate the use of the prednison but once that hummid weather starts the pain gets bad. Dr. Said that the nagging pain i have left in my hands and wrists(that feels as if someone is twisting my arms to the breaking point at times) are from arthitis possibly from the prednisone. To protect me from briddle bone development the dr. Has had me on boniva, and citracal. I have broken bones in my hands three times from sept. Of 2008 to june of 2009. I have been on methotrexate once a week for the last year and folic acid on the off days. I do confess though not being religious with the methotrexate. I am not currently on prednisone and i am feeling alot of joint pain over the last month and a half. Ibuprofen 600mg has helped. I don't know where i'm going from here. I welcome any feed back. I know my story is long, but it's the only way i can tell it.

 
Old 07-29-2010, 01:38 PM   #4
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pattianne24 HB Userpattianne24 HB Userpattianne24 HB User
Re: looking

Just finished reading your post. I was diag in 1995 with polymyositis, I had an EMG, blood work and biopsy of muscles in arm and leg. I was in my 40's then. I ended up on prednisone for 12 years. I found it really hard to function otherwise. I first took Immuran, side effect for me, cancer and had a hysterectomy because of that drug. Then I went on methatrexate, it can cause liver and kidney damage, and the combination of drugs can due a number on the bones. Now 15 years later, I only take pain meds -MS contin, which is slow realease morphine. I have tried very hard when I am feeling better to keep the doses low. I live in Ontario, the weather is humid, and the winters cold, and that has a bad effect of my muscles. I developed psoratic artheritis in 2008 and osteo in my neck, spine and lower back. This can be a very bad disorder and even though my CPK-blood levels have never been very high, I have alot of muscle damage in the past 15years. It sure can be hard to live with this illness. I am now 63, a recent widow, and have a large home and all the errands to do on my own. This illness got so bad that I was not able to work anymore. I have learned that everyone with polymyositis seems to be different, some have no pain, some have severe muscle weakness, some develop lung involvement and some even pass away. I joined a support group on the internet when I first got this illness, two of the women in the group died, one at 29 the other at 54. I know that I am one of the lucky ones, and I hope that you are too, to try and get a handle on this illness. I think maybe some stretching exercise, good diet, try to have a positive outlook does help some. best to you
Pattianne

 
Old 10-11-2010, 07:04 PM   #5
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Iodine64 HB User
Re: looking

I was diagnosed 25 years ago with Polymyositis. I was started on 100 mg of prednisone, but that did not work so they switched to Medrol. Medro was God sent. Since then I have been on Methotrexate and Imuran. Both damaged my liver so I had to stop them. My GI doctor told me to never use those 2 drugs again because they poison your liver. My Rhume was very upset that I would not take the drugs so I quit going to her and went to another one.
My polymositis was very painful. I could lay flat, but if I moved the pain was so bad I just wanted someone to put me out of my misery. When I sat on the floor I could not get up. I couldn't figure that out at first. I taught school and I worked on the 2nd floor and I had to climb stairs. In reality I pulled myself up the stairs.. It took almost a year to get a diagnosis, but when I did and I started on the Medrol I thanked God for the medrol. I have not been able to come off of the Medrol. I have been trying for about 6 years, but my cortisol level keep dropping to about 1. My adrenal gland just won't kick back in. I am making another attempt at it next week. If there is a side effect from the steroids I have had it.
I just retired this year I am 64 and I just didn't think I could make myself do another year. It was sheer determination that helped me make it from 1985 on. There were a number of times I just wanted to give up.

 
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