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Old 01-07-2009, 09:54 AM   #1
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torismomk5 HB User
I think I have polymyositis

Hi, I am Kim...I went to my neurologist yesterday, and had an NCV and EMG done. When it was over, the doc told me that he thought it was my muscles, and not my nerves...so I am going to see a rheumatologist friday to be definate. He wrote on his review...."probable inflammatory myopathy"...My question is, how is this treated? How do they treat for this horrible pain...the pain feels like it is nerve pain...lots of burning and stinging. Any responses, will be greatly appreciated. I am a stay at home mom of 4 girls, and this is really scary...I just don't want it to get worse...thanks

 
Old 01-14-2009, 01:13 PM   #2
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hugo78 HB User
Re: I think I have polymyositis

hey kim. I have polymyositis and was just wondering how it went with the rheumatologist? x

 
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Old 01-15-2009, 09:49 AM   #3
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Tlove HB User
Re: I think I have polymyositis

Quote:
Originally Posted by torismomk5 View Post
Hi, I am Kim...I went to my neurologist yesterday, and had an NCV and EMG done. When it was over, the doc told me that he thought it was my muscles, and not my nerves...so I am going to see a rheumatologist friday to be definate. He wrote on his review...."probable inflammatory myopathy"...My question is, how is this treated? How do they treat for this horrible pain...the pain feels like it is nerve pain...lots of burning and stinging. Any responses, will be greatly appreciated. I am a stay at home mom of 4 girls, and this is really scary...I just don't want it to get worse...thanks
Hi Kim Did you get a diagnosis yet? I am also a mother of 4 and have Myositis. You need to get a muscle biopsy to confirm it. If you do have PM you usually get treated with prednisone at first. It all depends on what you have and how your body is responding to determine what meds you'll need. The sooner you treat this the less permanent muscle damage you'll have.If you need to talk or if you have any questions that I can help you with, don't hesitate to write! I was diagnosed in April of 08. I'm not a pro but I have had many different experiences with this. Good Luck! TLove

 
Old 01-16-2009, 03:31 AM   #4
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torismomk5 HB User
Re: I think I have polymyositis

Hi...Yes..I was diagnosed with PM. I am on prednisone...60mg a day for right now...she mentioned a different treatment, cause the prednisone isnt working for me. I am doing the muscle biopsy on monday to be definite, but all of my bloodwork came back positive for it. My CPK levels are 550, and my Anti-Jo-1 level is high...I am praying it doesnt get worse before it gets better...thanks for your input...

 
Old 01-28-2009, 10:52 AM   #5
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CROSTHWAITE HB User
Re: I think I have 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

Last edited by moderator2; 01-28-2009 at 12:02 PM. Reason: posted contact info

 
Old 02-26-2009, 01:15 PM   #6
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jinnymac HB User
Re: I think I have polymyositis

Hi,
my name is Jane, I am 38 years old and I have had polymyositis for nearly 4 years. In the first year I experienced 3 major flares and at its highest my CK levels were 11,000.

I started on 60mg of prednisolone and 10mg methotrexate. After the 3rd flare, I was prescibed 20mg of methotrexate and 225g of cyclosporin.
There were times I never thought I would feel normal again, but I have now been stable for almost 2 years.

My biggest fear is that it will resurface at any time, but apart from that and the bouts of fatigue (of course), I feel pretty good.

At times of flare, one feels that one will never be normal again. And of course everything you read tells you of the horrors.

There are good times though. I eat well,avoiding processed foods were I can, I take supplements of vitamin C, Calcium and omega 3 fatty acids, I try to swim fairly regularly (although exercise was never my strong point) and when I need a rest, that's exactly what I do.

I had to leave my career of 15 years, but I returned to education and am in my final year at university studying food nutrition.

I just wanted to share this, so that anyone recently diagnosed can believe that it doesn't mean the end of life as you know it.
It can be a long and bumpy road, but the end is reachable as long as you believe it

I hope this helps someone. Take care everyone!!

 
Old 03-13-2009, 04:51 PM   #7
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Re: I think I have polymyositis

Hi Ken,
I took Lipitor for 7 days in August of 2003. I started to have severe muscle weakness, and I developed a weird, itchy rash after sun exposure. I went to my doctor, who gave a a shot of cortisone and said I had a phototoxic reaction to the Lipitor. I spent the next 2 1/2 years going from doctor to doctor telling them something was wrong with me. Finally, in December 2005, a UCLA dermatologist diagnosed me with Dermatomyositis. By this time, an EMG showed all of my proximal muscles had been damaged, and I had developed Pulmonary Fibrosis. I contacted Pfizer, the maker of Lipitor, but of course they were of no help. I have tried many medications, but since I went so long without a diagnosis, and, thus proper treatment, I am refractory to all of the medications I have tried. To add insult to injury, I have been denied Social Security disability because the doctors I saw before my benefits ran out were incompetent and misdiagnosed me. This has been a nightmare. If you were taking Lipitor when this occurred, you need to report it to the FDA and also Pfizer. I think this is highly underreported. Anyway, good luck to you. My faith in God has helped me tremendously, and I know that he will use this for good.
God Bless You,
Nancy

 
Old 04-24-2009, 12:23 PM   #8
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plzerone HB User
Re: I think I have polymyositis

Good day, my name is jerry , i reside in central florida. I was diagnosed with polymyositis in 1999, i started to develop weakness in the thighs and shoulders. I am also a renal patient. I have had a cpk as high as 17,000, i have takin everything i can take, and i am currently on Prednisone {10 mg daily} and ivig 2 days a month. My current cpk is 3000. Ive been dealing with this weakness since 2007. Question, will i ever get my strength back ? I am riding a stationary bike, and light weights, i hope it comes back, i have a 11 yr old autistic girl i have to run behind.

 
Old 04-26-2009, 06:47 PM   #9
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toribird97 HB User
Re: I think I have polymyositis

hi ken -- everything you are saying is the exact same as my mom ... i was wondering if you have had any luck since this posting with anything new... my mom has stopped taking all medications because she was getting nowhere & was really discouraged-- especially because of her weight gain

... she has since lost alot of weight which made her feel better...but i have noticed she has started having a hard time again ... somedays she can't even get up the steps. anyway i am just curious to see how you are feeling and hoping that there is a treatment that is working for you.
thank you
teresa

Last edited by moderator2; 04-26-2009 at 06:49 PM. Reason: too much quoting

 
Old 05-01-2009, 08:42 AM   #10
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CROSTHWAITE HB User
Re: I think I have polymyositis

Hi Teresa,
Sorry to hear about your Mum I'm sure it's very worring for you both. As you have read my initial introduction to my problem you will have seen what drugs I have taken and what drugs that I'm on (Steroids) and (Mycophenolate) at the moment with no improvement and noticed deterioration. I suggested that I come off them to see what reaction I would get but the Consultant wasn't too happy about it. I have just been away for a while and when I returned I received an appointment to see my Consultant later this month to discuss my situation and if there would be any more drugs that I could take. I'm afraid Teresa it's a case of just hanging in there and hoping that there is some drug or a combination of drugs that may stabalise the problem. Best of luck and don't give up hope. Kind regards Ken

 
Old 12-29-2009, 12:58 PM   #11
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wasierskij HB User
Smile Re: I think I have polymyositis

Hi Kim; I had a severe bout with PM and as soon as I saw a rumatoligst he gave me a cortozone shot and put me on prednasone 20 mg to start and in a couple days it was 90% better..I had a severe bout that lasted about a year as I was weened off of the pill.

hope this helps,feel free to reply.


john

Last edited by moderator2; 12-29-2009 at 01:24 PM. Reason: please do not solicit emails

 
Old 05-30-2010, 09:20 AM   #12
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Eimer HB User
Re: I think I have polymyositis

Hi Ken,
Im not sure if people read all threads as Ive already explained my situation on another. I thought in case you hadn't I would outline my experience with polymyositis as it might be useful for you to read. I was diagnosed in 2000 and at that time was fairly unwell and debilitated. I had a CPK of 18000 and was initially treated by a general medical consultant while I waited 6 months for an appointment to see a neurologist to whom I had been referred. Unfortunately I was only prescribed 60mgs Prednisolone and not referred for physio or any other intervention in the interim. When I eventually sawthe neurologist my diagnosis was confirmed based on EMG, Muscle Biopsy (although the muscle was very fibrous by then) and an assessment of my CPK.Curiously I cant say I have ever experienced really bad pain at any time though. I was immediately referred to an Immunologist in whose care I have continued ever since. At first she continued with the steroids reducing the dose and then introduced Imuran 150mgs daily along with a low dose of Prednisolone. After 7 years where I was having "breakthrough"episodes heralded by an increase in my CPK levels my doctor decided to try another treatment. I cannot remember the name of it but it made me extremely sick and even at a low dose I was unable to tolerate it. At that stage I was put on Cyclophosphamide 50mgs along with 20mgs of Prednisolone. This was 16 months ago and I have been really happy since. My CPK's have remained around 150 consistently. I have a problem with my lungs since the beginning and because it has not been identified I am untreated. Because of this and the immunosuppression I have had a couple of bad chest infections but I am prepared to put up with them for the stability I now enjoy with regard to the Polymyositis. I understand I may not be able to stay on this medication indefinately but since I believe the intention initially had been to increase the dose which then proved unnecessary I am hoping that the status quo will remain unchanged for a few years yet.
I hope this information is useful to you and anyone else looking for ideas.As bad as it seems when you are first diagnosed the most important thing is to believe that you WILL find the treatment that will work for you. Try to stay positive, it really will effect the course of your condition.

 
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