Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi - I am new to the group just as of today! i am so glad I found this support group cuz I really need to talk to people who are experiencing some of the same symptoms that I have. A little bk ground. I was diagnosed with a Collagen Vascular Disease and Mixed Connective Tissue Disease which are Lupus, Schleroderma and Polymyositis. Diagonses was about 12 yrs ago- since being diagonsed with these diseases I ran everywhere looking for answers. Doctor anfter
Doctor- was on different types of meds for a few years then just decided to give up the meds due to side effects. My diseases went into remission for about 10 yrs.Within the last year- my health as steadily declined . I really dont know much about Polymyosits but I am learning as I go. I am having trouble with My Voice - sometimes you really can't hear me too well. What I have read is that Polymositis effects your throat muscles- trouble swallowing- I choke - etc.
Is there anyone else out there in our group who is experiencing any of these same symptoms? I also have read that the life expectancy is about 7 yrs???- Is this Cancer?
I would just like to hear from someone who knows what Im going through and maybe we can help each other- thanks everyone!
Doctor- was on different types of meds for a few years then just decided to give up the meds due to side effects. My diseases went into remission for about 10 yrs.Within the last year- my health as steadily declined . I really dont know much about Polymyosits but I am learning as I go. I am having trouble with My Voice - sometimes you really can't hear me too well. What I have read is that Polymositis effects your throat muscles- trouble swallowing- I choke - etc.
Is there anyone else out there in our group who is experiencing any of these same symptoms? I also have read that the life expectancy is about 7 yrs???- Is this Cancer?
I would just like to hear from someone who knows what Im going through and maybe we can help each other- thanks everyone!
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Polymyositis does affect the throat/voice and swallowing - I do not know if you are on Predisone but it helps that. We are all very different with our combination diseases and what works best, and I am not a doctor, but you can live a normal life with these diseases (I asked at the TMA conference). There is an increased risk for cancer the year before and the year after being diagnosed so it is good to get preventive screenings especially for the breast, ovary, colon and skin. Attached is a link from the John Hopkins site explaining the symptoms:
http://www.hopkinsmedicine.org/myositis/myositis/polymyositis.html
I am sorry that you are in our group but we are here to help you!
Love Hugs and Prayers :-)
The cancer risk is greater with Dermatomyositis, and again int he first three years, so if you have had this for 12 years, you likely are past the worry window and just need age appropriate cancer screenings, like Colonoscopy at 50, pap, and such.
The medications can be hard, but they have improved in the last few years, so try no to focus on that worry, finding a specialist is really important though.
Tell us where you are located, and maybe someone will suggest their doctors if they are really happy with them. I go to Stanford DM clinic and then manage at home with my local Rheumy as a team.
Sending you strength and better swallowing and care,
Shawna
Blessings,
Kim
I know the side effects of the medications are scary but it seems to me like those side effects are less impact to our world than the side effects of the disease going untreated. You mention you just finished a round of Prednisone. I'm not sure what you mean. Most of us start on a high dose, like 60 mg and taper over several months/years. Usually we use secondary medications to help control the disease. I guess it depends how much the disease is bothering you. If you can manage without the medications and not have negative impacts on your quality of life, it sounds like a decent choice.
As far as survival rate, my understanding is this is a long term chronic disease that is not terminal if treated. I can see how it would be easy to die of pneumonia or something like that if our immune systems are compromised from the medication. It is a great question.
We look forward to you being part of our discussions!
Hope you find a treatment that works for you.
Amy
As for the throat problems, I have a paralyzed vocal cord resulting from a 1999 surgery, so it's difficult for me to know what the PM causes versus what the paralyzed vocal cord causes. I did have problems swallowing before my diagnosis that I think were due to the PM. I know it's frustrating not being heard well and also from choking. But there are "tricks" to speaking more easily and swallowing better. Talk to your doctor. Blessings and best wishes to you for a quick recovery. Life will get better.
Sending good thoughts and prayers your way..
Maggie