polymyositis life expectancy

I don't know it if will help, but I went completely gluten free, whole foods, paleo and I feel better. I will not eat anything processed and I refuse any big pharms.
If you are in a state with legal pot, it helps lots of people with the pain, anxiety, and appetite and there are no long term side effects.
Cry with him, when I was sick, when people cried, it helped me to know that they loved me. Hug and cry on him, tell'm how you feel!!! YOU are in this too and YOU feel the pain, do not hold it back your pain to anyone!
I lost my husband a few years back, I held it all in and I know that it made things worse.
Hang in there. Keep feeling.

I am 80 with polimyositis since 2008

Beautiful story. Very inspiring :-) I have SLE aka lupus. God Bless You and Your Hubby :-)

You must tell your family parent etc of your illness and keep them involved for support notwithstanding the fact that you may get upset with their questions. If you have the funds also try the Mayo Clinic as they have much more information on this and the diseases that may occur in conjunction with this problem ie Raynaud's Disease, and Scleroderma

Hi, my name is Linda Martin and I was just diagnosed with Polymyositis this last Friday May 27th 2016. I am 63 yrs old and am an RN at a hospital in New Mexico- this last year has been a roller coaster ride for me with trying to figure out what was going on with me. Swallowing issues , muscle weakness and concentration problems and I had a fight Friday with my Rhemo doc so we terminated our relationship and this Tuesday I am seeing a new one that comes highly recommended. I am scared, in denial and not emotionally dealing with it very well. It has affected my professional life and my personal life and not sure if I will be able to continue working or looking at going on disability. I have always been a gym activist and was running. The doc on Friday said I would need to go on Methotrexate- I hear that is a nasty medicine and I also take care of my elderly parents who live with me- have had shingles 4 times over last year. Glad to hear some positive feedback out there. I am truly scared right now and not sure what the road ahead is going to look like for me going forward. I will continue to check in with all of you for any suggestions and feedback. God bless us all.

I live in a state where medical marijuana is legal. I have just been diagnosed with Polymyositis and am due to see a new Rheumo doc this Tuesday May30th ( terminated my last doc this last Friday), and due to see a new one this next Tuesday. I am scared, an RN currently working and in the worse pain of my life. Are you taking any heavy meds the docs prescribe or living your life as you choose and having pot for pain relief ? I'm always been an exercise addict, runner, lifting weights and too afraid to start Methotrexate which is what they are suggesting for me now. Please let me know your thoughts and advice. Thanks so much.

Just diagnosed with polymyositis, on waiting list for hospital what can I do whilst I wait as could be months?

each case is different.. I would never presume to tell you how your life would be "no different"... it depends on how soon it was diagnosed, how much muscle tissue scarring you've had, and many other factors. these boards can be helpful but also dangerous with lay people making medical assumptions..

Hi Linda, I just found these posts. I hope that your new doctor worked out for you and got you on the right meds. I have RA, Sjogrens, my Primary issue until recently, causing chronic kidney issue, blood sugar issue,etc), migraines, and now Dermatomyositis- but with no skin issues, so I feel like it's Polymyositis. Started with swallowing difficulty/choking, then I couldn't get up stairs, off floor, etc. Now I'm on 2500mg CellCept. Took care of all muscles except for swallowing. Had to add Prednisone. Started at 30mg. That helped decently, but not all the way by any means. Doc tried to taper me back down, so-so at 25, started choking again at 20. Now back at 25 and raised the CellCept to 2500 from 2000. If this doesn't work, he wants to try Rituxan. REALLY don't want to. It's so scary and isolating! I have been on Inspire, but haven't found anyone with Polymyositis on there. This feed has been great to read. You never want to see others suffering, but it helps to not feel alone. If you get this and can, please let me know how you are doing. I hope you are feeling better. Take good care! Kerry

Kimberly, I just found this site. I hope that you are still doing well. You are the first person that I have found with Dermatomyositis. I have been diagnosed with that, though I have yet to have any skin affectation. I consider it Polymyositis at this point. Started with great difficulty swallowing, then I could barely get up our stairs. Then I was at Target, bent down and couldn't get back up. I mentioned it to my doc and she ran my muscle enzyme levels and they were at 2500. I have been seeing a Rheumy for almost 20 years as I have RA and Sjjogrens, which is my Primary causing many other problems for me. Anyway, so far I was on 2000mg of CellCept for the Myositis which helped everything except for the swallowing. So he added 30 mg of Prednisone. That helped a bit. He started having me taper down and the choking came back. So we are upping the Cellcept, the aired is back to 25. He says if this doesn't work he wants to try the Rituxan. I am feeling very nervous about it, but your entry made me feel better. I'm glad that you had so much relief and improvement from it. You have suffered so much from these diseases! Thank you for sharing, take good care! Kerry

Hello, it's been awhile since your post. I hope that both of you are doing better. How is your boyfriend doing on his meds? Still with the same doc? I don't know how big your community is and what your options are, but the most ports to thing for him is to have a doctor that he is comfortable with and that he feels supports him, listens to him and is, absolutely there for him.m if he doesn't feel that, then he needs to move on to another Rheumatologist. If he is still not feeling better, his body may not be responding to that combination or type of drug. Unfortunately he probably will always need to be on some kind of med. The trick is to find the lowest dose of the right kind to feel well enough now, prevent as much future damage as possible without the meds themselves doing too much damage. It's a very precarious 'dance'. That's why it's so important to have a good doctor that you trust and feel good about. He is very lucky to have you to care so much about him. Good luck to both of you!

My wife contracted polymisitus at age thirty-nine. It started with serious joint pain. By age 42 it had gotten into her lungs. I was fortunate enough to get her to Mayo Clinic. Eventually the disease cascaded. The problem with her lungs began to overwork her heart, causing an enlarged heart. Her only option was a lung transplant, but she really was not a candidate. She passed away at age fifty-three.

I hesitate to write this because it obviously did not have a happy ending. If I had written the question, however, I would want an honest answer. Every case if different. I wish you the best of luck

That's a long time to suffer; how painful for you to watch her decline. I am sorry for your loss.

Recently diagnosed with polymyositis. Started in the thighs. Has gone to hips, calfs, and shoulders. I have a cartoon character walk. But, beer helps the tremors when standing up. Yeah, I know, not a good treatment, but ya can't live forever. I'm less than a year out of prostate cancer surgery. 59 years old, but in my head I'm still 35. Be tough everyone. Love your family and your friends.

My heart goes out to you. Whatever works is a good treatment, there's not much out there! I recently bought a gluten free beer (celiacs), maybe it will help me too. Yes, we are trying to be tough, but my tough is running out. I am almost 57 and my parents who are in their 80's will outlive me. I am tired, and ready to leave this world. I am calling the doc today to order hospice; I can't fight this any longer. I can't do this any longer