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Old 01-28-2010, 09:10 PM   #16
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levek HB User
Re: I was diagnosed with Polymyositis

Along with daily prednisone, I get monthly IgIv (75 g), and weekly subcutaneous injection of methotrexate as the immunosuppressor. I am also trying a 3-month treatment of Traditional Chinese Medecine. It is also important that you rebuild the muscles that were affected by doing physiotherapy. I have been treated for some 4 months now and it took 3 months before I could feel strength and endurance coming back. I would estimate I am now at 60% of my normal physical state. My main problem was also legs and thighs: I had to lift my legs to put on my pants. I could walk but would fall forward if I tried to run.
Hope you find something that will work for you.

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Old 01-29-2010, 04:43 AM   #17
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ricky roinila HB User
Re: I was diagnosed with Polymyositis

I want to thank everyone who responfed to my little rant. I think it is very important to hear how others feel and how they are dealing with this desease. I really find myself alienated when I go to the hospital with a flare up ,and have to explain myself to the doctor's as if I were crazy they look at me, or do not believe that I am in pain. I wish the docor's could read some of your responses and get a bit of an insit on how we feel and that we are not along. just cause they are not firmilure with the desease does not mean it does not egsist. I will tell my doctor about this sight and ask her to show or post it for other doctor's to lurn from and share info throught. Thanks. < edited > if anyone wants to talk or share their feelings or experiances. later keep up keeping on.

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Old 01-29-2010, 11:28 PM   #18
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Re: I was diagnosed with Polymyositis

When you say have a flare up what does that mean? I feel how i feel all the time i can't distinct if i am going through a flare up. I would have days when i am very weak and i try to stay home and relax and days i can manage some activity.

 
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Old 01-31-2010, 03:48 AM   #19
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Re: I was diagnosed with Polymyositis

Quote:
Originally Posted by sharimagia View Post
When you say have a flare up what does that mean? I feel how i feel all the time i can't distinct if i am going through a flare up. I would have days when i am very weak and i try to stay home and relax and days i can manage some activity.
you will know a flare up when you can not wipe your own butt, get dressed, roll over in bed. bassically you have no energy or strength to move. god bless you if you never have a flare up.. ricky

 
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Old 01-31-2010, 09:46 AM   #20
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Re: I was diagnosed with Polymyositis

To Ricky and others: You are absolutely right when you express frustration with docs, etc. Not a rant! Some docs know less about the disease than others. Even a well-meaning friend (?) or family member will say to me, "Why don't you go to the gym and ride the stationary bike to build up your muscles." That's a real downer because most of us would if we could. I was only diagnosed a year ago October so I still take enough medicine to support muscles, I guess. Idea from doc is that as I get off prednisone (will stay on methatrexate, I think), there will be flare-ups. That's still ahead, isn't it? Hardest thing to accept is that polymyositis is never cured--I think that's what the doctor is telling me. Also spend way too much time trying to figure out where I got this goofy disease.

 
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Old 01-31-2010, 11:38 AM   #21
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Re: I was diagnosed with Polymyositis

Quote:
Originally Posted by sharimagia View Post
When you say have a flare up what does that mean? I feel how i feel all the time i can't distinct if i am going through a flare up. I would have days when i am very weak and i try to stay home and relax and days i can manage some activity.
A flare up for me is when my doctor tries to lower my medication dose because my cpk numbers have come down and he thinks maybe we can lower my prednisone intake. but when we try that after about a week or two I start feeling weaker and the pain is more intense. Its harder go get out of a chair or climb steps without help. that is where I am now. So he had to put me back on my normal medication dose. I am now going to start to go to physical therapy to see if that helps at all. Don't relax too much that makes it worse. you have tokeep your muscles loose that's the key. As hard as it is you must keep moving. Good luck.

 
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Old 02-01-2010, 08:44 AM   #22
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Re: I was diagnosed with Polymyositis

Quote:
Originally Posted by ricky roinila View Post
you will know a flare up when you can not wipe your own butt, get dressed, roll over in bed. bassically you have no energy or strength to move. god bless you if you never have a flare up.. ricky
oh i see. Then i have flare ups. I got off the meds. on my own because i a a person who doesn't like to use medicine for too long and after two months of no meds i began to be very weak to do anything and so i went back on the meds. I am doing my meds in low dose (20-25 per day). Things are harder to do with going up the stairs and getting up from a sitting position that is quite low. Hopefully things would come around.

 
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Old 02-01-2010, 09:07 AM   #23
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Re: I was diagnosed with Polymyositis

Quote:
Originally Posted by jymany View Post
To Ricky and others: You are absolutely right when you express frustration with docs, etc. Not a rant! Some docs know less about the disease than others. Even a well-meaning friend (?) or family member will say to me, "Why don't you go to the gym and ride the stationary bike to build up your muscles." That's a real downer because most of us would if we could. I was only diagnosed a year ago October so I still take enough medicine to support muscles, I guess. Idea from doc is that as I get off prednisone (will stay on methatrexate, I think), there will be flare-ups. That's still ahead, isn't it? Hardest thing to accept is that polymyositis is never cured--I think that's what the doctor is telling me. Also spend way too much time trying to figure out where I got this goofy disease.
Oh gosh! I thought i was the only who gets bad advise by people but i think is because they don't know what to say after you tell them about your disease. I have people tell me to take vitamins or think is my bones and take calcium. When i fell last month i needed stiches and my husband took me to emergency and i had to convince them that i am not in a abusive relationship and i really did fall. Unfortunately if i misstep i can't balance myself and instead fall like a statue. Thank goodness i went to the hospital that cares for my condition so its in their system and that what had convince them. I have a question, when you don't have a flare-up things are normal for you meaning you can climb stairs and do other common things without any agony because although i have some strength there are ceryain things i can't manage to do.

 
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Old 02-01-2010, 09:50 AM   #24
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Re: I was diagnosed with Polymyositis

If you are on prednisone you NEED to take calcium + vitamin D and probably Actonel to integrate the calcium. This is because prednisone causes osteoporosis and that could make you at risk for fractures since polymyositis sufferers are prone to falls (weakness in legs, thighs, pelvic girdle, etc.).

 
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Old 02-02-2010, 10:15 AM   #25
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ricky roinila HB User
Thumbs up Re: I was diagnosed with Polymyositis

Quote:
Originally Posted by levek View Post
If you are on prednisone you NEED to take calcium + vitamin D and probably Actonel to integrate the calcium. This is because prednisone causes osteoporosis and that could make you at risk for fractures since polymyositis sufferers are prone to falls (weakness in legs, thighs, pelvic girdle, etc.).
Well, another day another pill. I just got back from the doctor's. renewed my pills and started the downward spirel again. I am taking 7 pills of dteriods, with three patches and calcium,vitd magnisium and the breakthrough pain killers oxi. I happened to be 5 days early for my scrips so of course he had to give me a hard time. I asked for more poutant pain killers but he is a family doc, so he won't give me anything he is not firmiliar with. he told me to talk to the specialist. I really want to try imuran, or the mex. you folks have been talking about. Is it just me or do some of you run out of meds before the month is up? If i take a bath ,the patches come loose, plus we are not supposed to have it in contact with heat.I am waiting for the doc to refer me to the pain cclinic. they try all kinds of remadies.I have had this now for just over 2 years. it fluxuates and has it's up's and down's. I find that 7 seems to be the magic number for steriods and when I start to weed it down, that's when I have to use more pain killers and end up flaring up. so it's a catch 22. take the pills and hurt the liver, or don't and wined up in hospital on an I.V drip for a night or two.I am 40 years old and from what the specialist told me, about the desease is that after 5 years 50% of the people go into remision.

They also did a group of biopsies, and I got a cyst and infection. when i first suffered from this desease I woke up in the middle of the night and my legs were three times the size, acking,throbing and i could not even stand. after that i was in hosp for three months and they tryed every drug, and finna;;y stuck with the steriods and pain killers. my family has no history of anything like this and one doc suggested that I might have inhaled mercury or a heavy metal.well, at least i have the five year deadline to look forward too. because i can't work now and would really like to be a part of a productive society as apossed to watching oprah on t.v. ha.hha. take care one and all. keep the info coming, I for one really get alot out of your feedback and stories that I can relate too.

Last edited by moderator2; 02-02-2010 at 11:24 AM. Reason: posted contact info - please read the posting rules

 
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Old 02-02-2010, 08:26 PM   #26
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ricky roinila HB User
Re: I was diagnosed with Polymyositis

well hello people. i had my doctor's appointment this evenig. i was 5 days ahead of schesual ,mmeaning I should have had 5 days worth of meds and painkillers left. well after 2 years of getting these meds once a month, I have never made it to the end of the month with something lsft over. So as per par the doc looks at me as if he doesn't want to give me the meds and that i should have had enough to last. like i said earlier, he and most doc's make me feel like i did something wrong. i took too much too fast and now i need my months worth of meds early. well he gives them to me, but i asked him about the meds you folk are taking. imuran, and mextro (i now the spelling is bad) and his response was that he is uncomfortable giving me anything else witth out my specilist's approval. and that my liver might sufer, so basically my family doc is there just to push my pills, and even with that small job to do, he makes it known that i took the pills too fast. now if he really knew what i do, the patches, after 3 days, i cut open, and spread the rest of the jel inside over my chest and arms and legs. then i put the new patches on. as for the steriods, i take them religously because they are needed and they don't work like the painkillers. but the oxicodne i am supposed to take 1 every 3 hours or as needed regarding pain. well I take maybe 10 a day not 3 or 5. and even then i think i am imuned to them. they don't work like they used to. i wonder how much i will be taking in year 3 or 4or 5 cause 5 is the magic number when i am supposed to know if it will go into remision or if i will have it forever. sorry guys for the length of this letter. on the 10 i see my specialst so maybe she can purscrib the new drugs.question of the day for all... did anyone work with mechines or had a chance to inhail propane, any heavy metal particles or come in contact with mercury.one doc has a theory that this could have triggered the desease.???????p.s. the pharmasist gave me a new form of patches, they have the same amount 100mcg/h but are smaller, and more resistant to coming off, you can swim, bath ext, and they will stay on better. they are calledratio-fentanyl.opioid analgesic. and i got them at shoppers drug mart. o.k. good night and god bless.

Last edited by moderator2; 02-02-2010 at 08:30 PM. Reason: posted contact info - please read the posting rules

 
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Old 02-02-2010, 09:32 PM   #27
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Re: I was diagnosed with Polymyositis

Specialists in rheumatology are the ones who usually treat polymyositis though I think neurologists may be better qualified because this disease affects muscles. So, your best bet is to have both evaluate and treat you. That's my case, and from what I have read on Medscape, they are following prescribed procedure to a T. My neurologist even did a differential diagnosis with me using the results of the extensive muscular biopsy. Same care was taken at the hospital: they performed all possible tests to eliminate the other possible causes of the symptoms I had. I am quite satisfied with the medical care I received.

 
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Old 02-03-2010, 12:36 AM   #28
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ricky roinila HB User
Re: I was diagnosed with Polymyositis

hello to finnmaid. i to am from finland and would like to talk to you anout your aikment abd mine. hakkaa paalle suomen poika etta ruotsi meita voita. go finland in the olympics, ricky roinila

 
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Old 02-03-2010, 08:10 AM   #29
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Re: I was diagnosed with Polymyositis

Hi all. I know a lot of you have been asking about the use of Imuran. I have been using Imuran for 3 years. It takes at least a year before it starts working. I take 50 mg three times a day. This is a controlled substance medication and every month when I get it refilled I have to get authorization from my HMO. So if you decide to be put on it remember to renew your prescription when you have at least 3 days left on it because sometimes if your pharmacy can't get in touch with you doctor you might not get the renewal right away. Also Besides by Rhemutologist I also go to a Neurologist. He put me on a number of different vitamins to take along with my medications. Also he said it is very important to watch your sugar intake. Although I don't use sugar I noticed that in everything you buy at the supermarket has suger in it. So be sure to read your labels. Steamed vegetales you buy in a bag for the microwave have loads of suger in them. I only buy fresh vegetables. You must read your labels. I try and buy products that only have 7 grams of sugar or less and 250 grams of sodium or less. They are not easy to find but if you read your labels you will find them. Also only use whol grain or whole wheat breads, pasta, etc. Your diet has a whole lot to do with this disease. I never thought it did but it does. I have also started physical therapy to keep mny muscles stretched and loose. It has not been easy because it is very hard for me to lift my legs to stretch my muscles and when I get home from PT I usually crawl into bed. But you need to have a goal to work toward. Make it a small goal at first and then go from there. My first goal is to just be able to walk up a curb without feeling any pain. Once I meet that I will do a second goal. Since I seem to have this disease longer then anyone who has written on this site so far (30 years) I have tried it all and done it all but it seems it always goes back to basics and trying any new medications that come out. Hopefully they will keep doing research on this disease and find something that will work for all of us and one day we can all communicate with each other and say we are in remission. GOOD LUCK TO EVERYONE AND FEEL GOOD ONE DAY AT A TIME.

 
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Old 02-04-2010, 03:42 AM   #30
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Re: I was diagnosed with Polymyositis

hello and good day to all, just thought i would mention that on todays episode of house, the t.v. program, they mentioed our desease, yes they accually said polymyosis, they didn't talk about it much at all, only to say the symtoms of the paitient sounded like polymitosis. i thought it great just to hear them say it. now only if house could find a cure for iy. ricky.

 
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