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Old 01-28-2009, 10:59 AM   #1
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I was diagnosed with Polymyositis

Hi,

My name is Ken (64) and I was diagnosed with Polymyositis back in 2004. In 2002 I had a blood test which showed I had slightly high Cholesterol and was prescribed Statins. I then moved to a different area of the country and registered with a new GP and was given a routine blood test, which showed that my CK levels were abnormally high (1400). I was taken off the Statins and sent for various tests one of which was a muscle biopsy which showed that I had Polymyositis.

I was told that this condition was fairly rare (1 in 100,000 people) and was prescribed (Steroids). Over a period of time the dosage was increased to a maximum amount to which there was no improvement (apparently some people do respond to this medication). The (Steroids) were reduced to a lower dosage and when the lower dosage was reached I was given a drug (Methotrexate), again the dosage was increased over a period of time to a maximum dose, of which there was still no sign of improvement. It was decided to withdraw the dosage and in 2007 I was given a different drug, (Cyclosporine) and after two tablets they had an adverse effect on me making me feel extremely ill, giving me cold sweats, extremely bad headaches, vomiting and also made my blood pressure go sky high, I was taken off this drug straight away.

In April 2008 I was prescribed (Mycophenolate) which I am on at the moment, starting off at two tablets a day going up to five tablets a day. After about a month I began to feel extremely nausea for short periods of half an hour to up to two hours a day, it was suggested that I revert back to four tablets a day.

All the medication that a have been prescribed has not improved my situation, in fact in the last nine months or so I have noticed a more accelerated deterioration. My next meeting with the Medics is in February 2009 to discuss new medication, if there is any.

If anyone has any experiences with Polymyositis and any drugs that you are taking I would be more than grateful to here from you.

Regards,

Ken

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Old 12-11-2009, 11:56 AM   #2
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Re: I was diagnosed with Polymyositis

Ken,
I have a question for you. My husband has been diagnosed with focal myositis in his left leg. There are only a few cases of this and a few of them have developed into polymyositis. His pain is in both his arms and legs so they are thinking his is more polymyositis. Where is you pain and can you describe it? He is on ultram for pain (not working) and is starting prednisone tomorrow. He was also on statins.
Thank You
Sue

Last edited by hb-mod; 01-29-2010 at 05:40 AM. Reason: Removed Quote of immediately preceding post. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

 
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Old 12-12-2009, 04:31 AM   #3
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Re: I was diagnosed with Polymyositis

Ken,

My father was diagnose with polymyositis in 1999. He has gone through the routine of being prescribed with steroids and suffered the side affects for the same.

However the moment the steroids are left his CPK crosses 1000.

He has left the medication and is now on Homeopathy. He has been prescribed 5Phoses and Abrotinum. This has got his CPK to sub 500 levels.

Consult a Homeopath for the same.

Seems to have helped him ( Touch Wood ).

Rahat

 
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Old 12-12-2009, 05:35 AM   #4
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Re: I was diagnosed with Polymyositis

Hi Sue,

Sorry to hear about your husband. Things have changed since July of this year it appears that I have been miss-diagnosed and I could possibly have Mitochondrial Decease or Oculopharyneal Muscular Dystrophy (OPMD) I'm waiting for the results from a biopsy. I don't get any pain in my muscles but they ache at times and I'm loosing sensation in my toes. The main problem is lack of strength and fatigue in my legs and at this point in time it is getting gradually worse because I'm not on any dedicated medication for it other than steroids. I'm sorry I can't offer you any advice on this I'm afraid muscle problems are very complicated and it seems that surprisingly very little is known about them when things seem to go wrong. Try to keep positive and keep pushing the medics you could stumble on the right medication which may suit your husband that might not suit someone else. All the best and good luck.

Ken

 
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Old 12-12-2009, 10:24 PM   #5
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davai HB User
Re: I was diagnosed with Polymyositis

Hallo Ken, my father is 71 years old and was diagnosed with polyomyostitis 4 years ago.
He has never been sick one day in his life except for this. I firmly believe it was triggered by too much stress and a bout of shingles.

He was also put onto cortizone and used it for 2 years after which he had a heart attack. The doctor feels the cortizone had an effect. In the last 2 years he has been cutting down on the cortizone and following a healthy heart diet.

We are so thankful that he is still able to walk! He battles to get up when he sat down, as his leg muscles are almost non-existing.

We have searched the internet for any treatment but the only one available is the white blood cell transfusions from America at R75 000 a month for one tube.

My father opted to save his money.

I am a firm believer in natural remedies and vitamins and minerals.

I wish you all the best.

Annalien

 
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Old 12-15-2009, 02:33 PM   #6
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Keith2468 HB User
Re: I was diagnosed with Polymyositis

There are about 5 medicines that have track records of working on PM. If the mycophenolate (CellCept) doesn't work within a few months, they'll start trying the others. Unfortunately, most of them take a few months to know if they will work.

Keep your doctor posted on your side-effects. Don't adjust the dosages on your own unless he says it is okay.

If you can't reach your rheumatologist or neurologist, see your family doctor.

In many cases, maybe most cases, MDs can get your CK back to the normal range for long periods of time, sometimes forever (about 20% of cases), but generally people will have flares where the CK goes back up.

Last edited by Keith2468; 12-15-2009 at 02:35 PM.

 
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Old 01-05-2010, 09:40 PM   #7
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Re: I was diagnosed with Polymyositis

Ken! I was diagnosed with polymyositis in October 2008. CPK reached 7,000. At that time, I started taking 40 mg prednisone/day. I'm down to 5mg/day now. Also take 8 (2.5 mg) methatrexate once a week. I have brought CPK into an acceptable range. But, it has not been an easy road. Muscle biopsy in Oct '08 proved nothing--nothing more than a DVP (deep vein thrombosis) and a pulmonary embollism in each lung in
Feb. '09. I have returned to the gym three days a week. Appear to be getting stronger but am very susceptible to every little germs floating around--intestinal, H1N1, and this week, the common cold. If I can answer any question regarding meds, please contact me.

 
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Old 01-05-2010, 09:52 PM   #8
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Re: I was diagnosed with Polymyositis

Forgot: Important to have regular blood work. No sleep after a big dose of prednisone so necessary to have a sleeping pill. I just got off coumadin (for the blood clots) last week. I am thankful for that. Important to rest a little every day--put feet up and read a book. Important to try to eat healthy diet of vegetables and fruits, protein and good grains. And most important, maintain a happy attitude--laugh, sing, listen to good music. And, never give up!

 
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Old 01-20-2010, 04:03 PM   #9
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ricky roinila HB User
Re: I was diagnosed with Polymyositis

hei there, i was diognosed with polimytosis 2 years ago, they say after 5 years you will know if it goes into remition or you have it for the rest of your life. i also take steriods, they tryed to weed it down to 1 aday fro 8 pills, i ended up in hospital were i spent 4 days on an i.v. and back up to 8 pills plus an antidepressent. which seems to work. the cronic pain is what kills me. i am on 3 phentinole patchs of 100 mil ebery 72 hours.also a break through oxocodine 3 pills a day but i take 8 or more so a months persript lasts 2 weeks.the pain killers work but the problem is you get imuned to it with long term use.i keep asking for more which makes me feel like a drugy but they put it on me from the get go so what do they expect.i am waiting to get on with a cronic pain clinic were they try other forms of pain relief including methadone relief or even medical meriguanna, good luck and do you have any sugestions on the constent tingling,pain and ack, and lack of balance or flexabillty. keep up the good fight cause there are always people worse of then us. it's just that at times it gets hard to keep getting on. doesn't it. stay away from alcohol is a good idea but if the doc's could go throught a day or two of our pain they too would have a few pops, i'm sure. thabk you ricky.

Last edited by moderator2; 01-20-2010 at 05:25 PM. Reason: posted contact info - please read the posting rules

 
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Old 01-21-2010, 06:11 AM   #10
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Re: I was diagnosed with Polymyositis

Hi, I was diagnosed with Polymyositis 5 years ago but it looks like I've been miss-diagnosed and they think I may have Oculopharyngeal Muscular Dystrophy although similar in many ways to Polymyositis it has put a different light on things regarding any treatment (if any). The results of a blood test won't be known until mid March 2010 at the earliest. So I'm patiently waiting for the results to come through. If the results are negative the we start all over again (a long slog I'm afraid). If the results come back positive then I will know the Devil I have to battle with....here's hoping!

Ken

 
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Old 01-23-2010, 09:51 AM   #11
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Re: I was diagnosed with Polymyositis

Hi, my name is Elaine and I have tried all the medications you have. I am 65 years old and was diagnosed with polymyositis in 1984. I have been on Prednisone ever since. I am currently also taking Imuran which seems to help in combination with the Prednisone. However, whenever my cpk levels go down and my doctor tries to lower my doses I get a bad flareup.

 
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Old 01-24-2010, 02:13 AM   #12
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ricky roinila HB User
Cool Re: to eilean

hello eilean, thank you for your reply, it is nice to be able to hear that other people are out there who know what i am talking about. it makes me so mad when i have dlare up,go to the hospita; and explain each time to a differant doctor what the problem is and they look at me like either i am a drugy assking for morphine or that it's just in my hrad and why am i doing this to myself. i understand that the doctor's may not be firmilur with the desease but after 2 years and a long history chart in front of them ,you would think that they would take me seriously and ease the pain at least first and then start playing around with their different deas of tests and prognosises. I came across this formate by accident and i tel you it has been a great aid to my own mental health just knowing that i am nit along out there in this pain and discomfort.I wonder if there is a certain amount that the doctors can by law aloow us to take of pain medicaton. we all understand that we become immuned to the dossages after time and you would think that the doctor's know this as well, so wh do they stop at 100 pills of oxicodine for me know, at which i have been at for a year. they might order me one more patch which would make it 4 at 100 mil a patch every 72 hours, but i have been doing that on my own for a while when needed already. i even cut the old patches open and spread the jell from within (what's left of it after 3 days) over my chest and arms to get the maximum amount out of each patch. this i think if i told them i diid would convince them that i am a hard core druggy. which let me make it clear i am not. I have tryed mariguanna for pain and it did help some aspespecislly with my weight loss, but i don't want to spend my days in bed sleeping the world away. god bless my wife who has to deal with me and she does without complaint. I truely would not know what to do if I were along. Does anyone know of any other pain relief meds or procedures that can keep me cohearant but alos out of pain. sometimes it just gets so unbarable i break down and have a few too many drinks just to get by, aspecially when the real meds run out. and this seems to happen at the end of each month when the pills for a months refill run out in three weeks. sorry to vent, but i am glad that there is a place to vent to. keep up the good fight and like I always say, there are people out there worse off then me so remember that and the pain can be endured. stay dtrong everyone. ricky roinila.

Last edited by moderator2; 01-24-2010 at 06:50 AM. Reason: posted contact info - please read the posting rules

 
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Old 01-27-2010, 10:01 AM   #13
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Re: I was diagnosed with Polymyositis

Hello Rahat

I am very interested in your response regarding Homeopathic medication in the treatment of Polyomyositis.

Could you please tell me is 5Phoses the name of a medication or is it Phoses and 5 is the dosage?

Also is this the only medication your father is taking?

Thanks for your help

Kvetcher

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Old 01-27-2010, 03:56 PM   #14
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Re: I was diagnosed with Polymyositis

Ken, I am in the same predicament as you. I am going to my doc tomorrow to talk about an antibiotic treatment/therapy that i read about online that show positive feedback. The drug that was giving is miocin/minocycline. The treatment is for several months or even years it depends on your body to respond. I personally think this is what i need to do. Something in my gut says this is the answer. If i even have to i will visit this doc. in cali. but the visit is very expensive but tax returns is here and if i have to thats where my money be going. Maybe you should consider this and demand your doctor put you on this treatment being you have tried everything and no improvement to your health. Good luck!

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Old 01-28-2010, 05:39 PM   #15
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Re: I was diagnosed with Polymyositis

I am presently taking Imuran with my Prednisone. I take 50 mg three times a day. I have been on Imuran for 3 years now. It take one year before it starts taking effect. It has helped a little bit but the idea of the medication is to get me off the Prednisone which so far it has not done. My CPK count fluctuates. When my doctor tries to wein me off the prednisone my cpk count goes up. So right now I am at a stand still. I feel a flare up coming on and my doctor has tried all the medications out there so far. I am loss as to what to do now. I am trying to keep positive but after suffering with this disease for 30 years it gets harder and harder. The disease is mostly in my legs and thighs and the hardest thing is getting up from a chair and climbing steps. Sometimes I CAN'T event lift my left to get up a curb. I was thinking of trying homapathic medicine and see where that leads. If anyone has tried anything new please let me know.

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