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Old 01-25-2010, 11:51 AM   #1
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shar621 HB User
polymyositis

Hello everyone,
I am glad I found a place to read and talk about my condition. I am 30 years and have polymyositis. The diagnose was made three years and so far my condition feels like it has gotten worse. I feel that things are not going to get better and i am often depress. Daily activity is hard on me and for that i rather stay at home and in my bed. I was a very active person, love to exercise and do a lot of outdoor activities. My CPK is crazy last blood work the numbers was over 4,000, when i was first diagnose it was over 10,000. I recently found web sites that offer herbal alternatives to help and i order to see if it can help me. Has anybody try any? Did it help? I've done the meds. and IVIG and nothing this is my last option.

 
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Old 01-26-2010, 08:25 PM   #2
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levek HB User
Re: polymyositis

Same diagnosis for me, but the meds (prednisone, methotrexate injection, IGIV) or the other means I used to try to overcome PM (physiotherapy, acupuncture, osteopathy and Traditional Chinese Medecine) took a couple of months to become effective. I am not back to my former shape but things are better.
TCM remedy is herbal (7 kinds of plants) in tablet form - it's called Dermatomyositis Remedy - I bought a 3-month supply < edited >

Last edited by hb-mod; 03-23-2010 at 05:20 AM. Reason: Please do not post disallowed Internet websites, per Posting Policy. Thanks!

 
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Old 01-26-2010, 10:24 PM   #3
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shar621 HB User
Re: polymyositis

Thanks for the reply I actually think I order from there the other day, How long you had to wait for the order? I was online reading about antibiotic therapy that use Minocycline. I am going to call my doctor asap and insist to be prescribe to this. This is about the last remedy i can hope to change my current state.

 
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Old 01-28-2010, 09:08 AM   #4
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levek HB User
Re: polymyositis

Hi!
I ordered on December 18, 2009 and received the pills January 11, 2010 (shipment was probably slowed due to the Holidays). I ordered in the UK, < edited > in the USA and, strangely, the package was shipped from Pakistan.
I hope Minocycline will be of help to you.
Best wishes.

Last edited by hb-mod; 03-23-2010 at 05:21 AM. Reason: Please do not post disallowed Internet websites, per Posting Policy. Thanks!

 
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Old 11-10-2011, 07:13 PM   #5
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ycaudillo HB User
Re: polymyositis

I'm sorry to hear about your situation, have you tried predisone and methotrexate I am 45 and was diagnosed a year ago. My numbers were as high as yours and now my number that were last checked yesterday, was 356 unfortunately I beleive they have to try everything to see what works for you and I know it can be time consuming but when they do, your numbers will dropp like mine did. I also become depressed and find that keeping buisy helps and staying in bed makes my depression worse. And I'm afraid I'll get bed ridden, atleast I'm mobile with my own strength without canes or wheelchairs. I also am a single parent with 12 year old twins boy and girl, my son is autistic and he's the one I am most worried about, because my family won't be able to care for him if somthing God forbid happens to me. He would likely have to go to a group home especially for people with disabilities and that would kill me. I pray this information helps and that they find the medications for you ASAP. And I've never tried natural remedies but think it's a great idea. Anything is better than meds. God bless you and your family through this difficult time.

 
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