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Old 01-23-2010, 10:05 AM   #1
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wagdomlet HB User
Unhappy I have Polymyositis

Hi, my name is Elaine. I was diagnosed with Polymyositis in 1984. I am 65 years of age and recently retired. I have been on steroids since 1984. My doctor has put me on many medications including Igg iv which did not help. I am presently taking Imuran along with my Prednisone. It keeps me functioning. The frustration part is that everytime my cpk count goes down my doctor tries to wein me slowly off the Prednisone and when we do then I get a flare up so its back to a higher dose. I have learned to live with this disease which too much is still not known about it but when I feel I am doing everything right in taking my medication, trying to eat healthy doing light exercise because I can't exercise too long and just not giving into it and then I go to the doctor and no progress has been made in my tests I get so discouraged. I went to the doctor today and my cpk count was higher then it has been. I am now going to go for physical therapy and go back to the neurologist to see if there is anything new at his end. My muscles are getting weaker, I can't get off a chair without help. I can't even walk up a curb without help. This is the first time I really feel like giving up. If anyone has any other ideas of things I can try that might have worked for you, please let me know.

 
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Old 01-25-2010, 11:33 AM   #2
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Re: I have Polymyositis

Quote:
Originally Posted by wagdomlet View Post
Hi, my name is Elaine. I was diagnosed with Polymyositis in 1984. I am 65 years of age and recently retired. I have been on steroids since 1984. My doctor has put me on many medications including Igg iv which did not help. I am presently taking Imuran along with my Prednisone. It keeps me functioning. The frustration part is that everytime my cpk count goes down my doctor tries to wein me slowly off the Prednisone and when we do then I get a flare up so its back to a higher dose. I have learned to live with this disease which too much is still not known about it but when I feel I am doing everything right in taking my medication, trying to eat healthy doing light exercise because I can't exercise too long and just not giving into it and then I go to the doctor and no progress has been made in my tests I get so discouraged. I went to the doctor today and my cpk count was higher then it has been. I am now going to go for physical therapy and go back to the neurologist to see if there is anything new at his end. My muscles are getting weaker, I can't get off a chair without help. I can't even walk up a curb without help. This is the first time I really feel like giving up. If anyone has any other ideas of things I can try that might have worked for you, please let me know.
Elaine, as a long veteran with this disease i was hoping you could give me some advise. I also was diagnosis with polymyositis three years ago. I am very depress because my condition has not improve. My CPK numbers are still very high and i am weaker than when i first diagnose. I am young just 30 years and i feel like my life is over. I am an advocate to eating right and try to exercise but exercising is hard because my muscles are so weak. I have fell several times because i am so weak and batter my face and permanently fracture my hand because of the falls. Hopefully things would come around so do only thing I can say is pray to your God and continue to heed your doctor's advise.

 
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Old 01-25-2010, 11:37 AM   #3
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Re: I have Polymyositis

Quote:
Originally Posted by wagdomlet View Post
Hi, my name is Elaine. I was diagnosed with Polymyositis in 1984. I am 65 years of age and recently retired. I have been on steroids since 1984. My doctor has put me on many medications including Igg iv which did not help. I am presently taking Imuran along with my Prednisone. It keeps me functioning. The frustration part is that everytime my cpk count goes down my doctor tries to wein me slowly off the Prednisone and when we do then I get a flare up so its back to a higher dose. I have learned to live with this disease which too much is still not known about it but when I feel I am doing everything right in taking my medication, trying to eat healthy doing light exercise because I can't exercise too long and just not giving into it and then I go to the doctor and no progress has been made in my tests I get so discouraged. I went to the doctor today and my cpk count was higher then it has been. I am now going to go for physical therapy and go back to the neurologist to see if there is anything new at his end. My muscles are getting weaker, I can't get off a chair without help. I can't even walk up a curb without help. This is the first time I really feel like giving up. If anyone has any other ideas of things I can try that might have worked for you, please let me know.
I was wondering what are CPK numbers? My numbers right now are 4,000 but when diagnose with the condition it hit 12,000.

 
Old 03-10-2010, 04:03 PM   #4
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trouble222 HB User
Re: I have Polymyositis

Hi, When I was 28yrs. old I came down with an unknown disease. I suffered but had to keep going as I had three kids. I have a couple of questions, does this disease go into remission? Can it come back and just attack the breathing. about three years ago I was dx with PMR. Sed rate and inflamatory was high and put on prednisone. This is the meds that cured my other disease. Oh yes, one of the doctors I went to back when I was younger was trying to dx me with this disease thought that this was I had.
Do either of you have breathing problems? I feel like no matter what I do nothing works. I have a lot more wrong with me but will not get into that now.
any info would be greatly appreciated.
Anna

 
Old 03-11-2010, 08:20 PM   #5
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levek HB User
Re: I have Polymyositis

CPK is creatine phosphokinase also known as creatine kinase (CK), not to be confused with creatinine which is a break-down product of creatine phosphate in muscle - creatinine is filtered by the kidneys and its levels in blood and urine indicate if the kidneys are working properly.
CK or CPK is considered normal between 60 and 400 U/L. Usually, the lab will alert the treating physician when levels go over 400.
"Elevation of CK is an indication of damage to muscle. It is therefore indicative of injury, rhabdomyolysis, myocardial infarction, muscular dystrophy, myositis, myocarditis, malignant hyperthermia, and neuroleptic malignant syndrome. It is also seen in McLeod syndrome and hypothyroidism. The use of statin medications, which are commonly used to decrease serum cholesterol levels, may be associated with elevation of the CPK level in about 1% of the patients taking these medications, and with actual muscle damage in a much smaller proportion." (from Wikipedia)

 
Old 03-11-2010, 08:35 PM   #6
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Re: I have Polymyositis

Quote:
Originally Posted by sharimagia View Post
Elaine, as a long veteran with this disease i was hoping you could give me some advise. I also was diagnosis with polymyositis three years ago. I am very depress because my condition has not improve. My CPK numbers are still very high and i am weaker than when i first diagnose. I am young just 30 years and i feel like my life is over. I am an advocate to eating right and try to exercise but exercising is hard because my muscles are so weak. I have fell several times because i am so weak and batter my face and permanently fracture my hand because of the falls. Hopefully things would come around so do only thing I can say is pray to your God and continue to heed your doctor's advise.
I recently got good news: my CKs are back to normal after treatment. It was and still is a multi-faceted treatment - prednisone, methotrexate (injected), immunoglobulin intra-veinous (75g) monthly, physiotherapy (daily exercise), traditional Chinese medecine, acupuncture, chiropractics, osteopathy. And I don't know if it was one particular remedy or the ensemble that did the trick, but I can tell you that there is hope. Best wishes.

 
Old 03-11-2010, 08:50 PM   #7
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shar621 HB User
Re: I have Polymyositis

Quote:
Originally Posted by trouble222 View Post
Hi, When I was 28yrs. old I came down with an unknown disease. I suffered but had to keep going as I had three kids. I have a couple of questions, does this disease go into remission? Can it come back and just attack the breathing. about three years ago I was dx with PMR. Sed rate and inflamatory was high and put on prednisone. This is the meds that cured my other disease. Oh yes, one of the doctors I went to back when I was younger was trying to dx me with this disease thought that this was I had.
Do either of you have breathing problems? I feel like no matter what I do nothing works. I have a lot more wrong with me but will not get into that now.
any info would be greatly appreciated.
Anna
I was diagnose with the condition in 2008. Things has not improve the way i hope. My cpk is still very high and i am weaker now than i could remember. I fell a few times with falling on my face and doing major damage. I am being optimistic because things could be worse. I could be in a wheelchair or could not do anything on my own. You should consider buying turmeric it is an alternative medicine as well boswella. I have been using that along some other products. I figure i work to get my body back to normal. Eating well is very important. Try to strict to eating lots of vegetables especially half to be raw. Fruits are important. Toss the refine sugars and white carbs including potatoes. If i eat potatoes i eat a small portion. Try to move as often as your body permits you but if you need to rest and you can you should do it. Also lots of water.Hop this advise is essential.

 
Old 05-14-2010, 02:21 AM   #8
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Re: I have Polymyositis

Hi Elaine,
I am 50 years old and was diagnosed in 2000. At that time my CPK was 18000 and I was barely able to lift my arms and legs. I was initially treated with a course of steroids and stayed on 60mgs of Prednisolone for nearly 18months. Gradually my Immunologist introduced Imuran and I took 150mgs of this a day in tandem with varying doses of Prednisolone for some years. My symptoms improved from time to time but as you have said each time the steroid was reduced the Myositis became active again. The doctor wasnt happy with the erratic response to my treatment and decided to try another new treatment which I cannot recall the name of but which effected me very badly. after 3 weeks this was discontinued and in Jan 2009 I was started on Cyclophosphamide 50mgs a day along with 20mgs of Prednisolone. The improvement has been amazing. I am now taking 3mgs of prednisolone. I was fairly anxious about taking Cyclophosphamide at first but the benefits outweigh the risks in my mind. My CPK has been stable at around 150 for the past 12 months and while I'm not expecting to regain all of my strenghth I am really happy.
My only problem is my cholestrol level which is very high 7.6. If anyone knows how to safely reduce this I would be delighted to hear your thoughts.

 
Old 05-15-2010, 06:47 AM   #9
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Re: I have Polymyositis

Its great to come here and read great news about this condition. I wanted to know more about Cyclophosphamide your doctor put you on and it improve your condition. I have tried steriods, methotrixate, and now antibiotic therapy and it has been a slow decline. I would like to tell my doctor about this and if you could tell me more i would greatly appreciated.

 
Old 05-16-2010, 12:44 PM   #10
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littlemoma2 HB User
Re: I have Polymyositis

Quote:
Originally Posted by wagdomlet View Post
Hi, my name is Elaine. I was diagnosed with Polymyositis in 1984. I am 65 years of age and recently retired. I have been on steroids since 1984. My doctor has put me on many medications including Igg iv which did not help. I am presently taking Imuran along with my Prednisone. It keeps me functioning. The frustration part is that everytime my cpk count goes down my doctor tries to wein me slowly off the Prednisone and when we do then I get a flare up so its back to a higher dose. I have learned to live with this disease which too much is still not known about it but when I feel I am doing everything right in taking my medication, trying to eat healthy doing light exercise because I can't exercise too long and just not giving into it and then I go to the doctor and no progress has been made in my tests I get so discouraged. I went to the doctor today and my cpk count was higher then it has been. I am now going to go for physical therapy and go back to the neurologist to see if there is anything new at his end. My muscles are getting weaker, I can't get off a chair without help. I can't even walk up a curb without help. This is the first time I really feel like giving up. If anyone has any other ideas of things I can try that might have worked for you, please let me know.
Well..I understand the pain from polymyositis and have been living with it since 1998 and have tried everything...currently on duregesic patches & darvacet plus 20 other pills and it only gets worse...I have a wonderful Dr so I try not to give up...So just hang in there!

 
Old 05-18-2010, 05:50 AM   #11
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Re: I have Polymyositis

Quote:
Originally Posted by sharimagia View Post
Its great to come here and read great news about this condition. I wanted to know more about Cyclophosphamide your doctor put you on and it improve your condition. I have tried steriods, methotrixate, and now antibiotic therapy and it has been a slow decline. I would like to tell my doctor about this and if you could tell me more i would greatly appreciated.
Hi Sharimagia,
Cyclophosphamide is a chemotherapy drug which when used for the treatment of cancer is given in much larger doses ( I think 1000's of milligrammes rather than the low dose I take). It is also called Endoxana. I haven't experienced any side effects taking it and as long as I drink plenty of water and take a preventative antibiotic to protect my bladder I shouldn't have any problems. Unfortunately I cannot stay on it forever. I don't know how long I will be allowed to continue on it but Ive been taking it 16 months already and my next appointment isn't till August.
I hope this is some help to you.

 
Old 05-25-2010, 12:54 PM   #12
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toribird97 HB User
Re: I have Polymyositis

Hi Elaine my mom has Polymyositis just wondering if you have ever had any treatment with Rituxan ??? Unfortunately I don't have anything positive to share with you nothing has worked for my mom but the Dr's are saying they are confidant about this infusion. Right now we are trying to get her covered so that we may take her to the Myositis Clinic in Baltimore before we start the infusion because we just don't know and the side effects make me nervous. It's so very frustrating, Good luck to you and do not give up there really has to be something. If we have any luck on June 24th I will send you a message.

 
Old 01-19-2011, 08:26 PM   #13
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Re: I have Polymyositis

Quote:
Originally Posted by wagdomlet View Post
Hi, my name is Elaine. I was diagnosed with Polymyositis in 1984. I am 65 years of age and recently retired. I have been on steroids since 1984. My doctor has put me on many medications including Igg iv which did not help. I am presently taking Imuran along with my Prednisone. It keeps me functioning. The frustration part is that everytime my cpk count goes down my doctor tries to wein me slowly off the Prednisone and when we do then I get a flare up so its back to a higher dose. I have learned to live with this disease which too much is still not known about it but when I feel I am doing everything right in taking my medication, trying to eat healthy doing light exercise because I can't exercise too long and just not giving into it and then I go to the doctor and no progress has been made in my tests I get so discouraged. I went to the doctor today and my cpk count was higher then it has been. I am now going to go for physical therapy and go back to the neurologist to see if there is anything new at his end. My muscles are getting weaker, I can't get off a chair without help. I can't even walk up a curb without help. This is the first time I really feel like giving up. If anyone has any other ideas of things I can try that might have worked for you, please let me know.
Boy we have a lot in common. I was diagnosed in 1985. I am now 64 and I retired from teaching in June 2010. I am lucky though my CPK has been low for a while. I am now trying to get off the Medrol, a steroid. Pred did not work for me so they put me on Medrol.(I consider Medrol GOD sent.) My poly is very painful. I know not all of them are. But the Medrol took the pain away!
It has been a long process trying to get off of the Medrol. I have been trying for about 6 years. Each doctor I go to says oh we can do it in about a year. RIGHT! The Endo I now have says he don't think I will ever be able to get off of them after 25 years. My adrenal gland just won't kick back in. He said he would be happy to get me down to 4 mg. I guess I will just have to live with that.

I, like you in the past, everytime they lowered the steroids the Poly would raise its ugly head and up we would go back up on the Medrol. I have also been on Imuran and methotrexate. Both of wich I stopped because they damaged my liver. My GI doctor said do not take that poison.
I know they tell us to exercise, but I have found that when I do the poly flares back up. I joined a Gym and fractured the vertibrae in my back working out on their equipment. You know bad bones because of the steroids.
I hope you are feeling better. Please keep me posted.

Last edited by Iodine64; 01-19-2011 at 08:27 PM. Reason: misspelled word

 
Old 02-04-2011, 10:46 AM   #14
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Re: I have Polymyositis

Elaine,

Have you asked your doctor about Rituxan infusion? I tried it after going off Imuran and it did not work. IVIG has shown significant improvement after one year of monthly infusions.

The downside of IVIG in my case is that I still need 10mg of Prednisone to keep the CK level down. Prednisone has given me a few critical side effects in the past three years.

Good luck with your medication search.

bxq

 
Old 02-07-2011, 10:33 AM   #15
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socalldad HB User
Re: I have Polymyositis

Elaine. I have been fighting for just about alittle over two years. By the time of my first visit with the nuero i was in a very progressive stage of the disease. Unable to walk, swallow and ended up in the hospital with a peg tube that was removed about a year ago. The reason i share this is this disease hits everyone differently and recovery and remission takes its own course. If you were to see me today the average lay person would not be able to recognize the visible diasability until I try to walk down a stair, run after a ball or even get up off the floor. But through time these quality of life circumstance will come back but not 100%. I also take Immran but was weeded of pred. Definetly noticed loss of strenght. I guess all I can say is try doing something new everyday that you had difficulty acheiving yesterday. Hope this helps.

 
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