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Polymyositis

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Posted 4/9/2018 4:07 AM (GMT 0)
I have been having extreme hip pain that goes down my legs for months now, as well as back and neck pain. I chalked it up to lupus, RA and fibro, which it very well may be, I figure it is inflammation related. Within the last 6 months I’ve also been dealing with some issues with my throat where I feel like it’s closing, have a hard time swallowing at times and wake up at night coughing. Anyway, this evening I received some information from my younger 1/2 sister whom I do not have much contact with, she told me that her twin brother was diagnosed with polymyositis a few months back. And that she was in the process of under going testing herself because of issues she was having with her esophagus and heart.

I looked up polymyositis and read that a lot of the issues I have been dealing with fit the symptoms and it is related to lupus, sjogrens and raynauds (sigh). I did a search here but couldn’t find any posts related to polymyositis. Does anyone know have any dealings with it or anything about it that they could enlighten me with? I’m going to email my doctor tomorrow but right now just looking for info.

Thanks
Melissa
Posted 4/9/2018 3:28 PM (GMT 0)
Have you searched HW for polymyositis? Our Lupus forum member, Bill (Bsime) has it in connection with his MCTD. He posted here just a few days ago, although is isn't always around all that much, if you check the recent post by Fawn P. you can see a post from him and email him directly. (Although, of course, it'd be better to communicate here so we can all be educated!)

Best wishes,
Posted 4/9/2018 8:10 PM (GMT 0)
Pretty sure Bill had some IVIG treatments for his polymyositis, along with some high dose (60 mg) prednisone.
Posted 4/10/2018 2:55 AM (GMT 0)
I have had polymyositis since 2005. Lupus is an entirely different disease although some of the symptoms can be similar. Many of us have symptoms of both diseases in an overlap condition called mixed connective tissue disease which can also include symptoms of scleroderma and even other autoimmune diseases. Treatment is pretty standard in most cases, prednisone and then some pred sparing med like azathioprine or methotrexate. For resistant cases rituximab, IVIG, cellcept and other meds can be used to treat. Cases can run from mild to deadly. Mine was extreme and I am fortunate to be here but got great care and also got lucky. PM has been in remission since Jan 2006 but lupus has come back over the past 4 years and I am currently being treated with pred and had an IVIG infusion 2 weeks ago.

If you want a good source for PM go to www.myositis.org. If you want to hear my full story the Myositis Association made a video of my patient story and you can find it on Youtube by searching my name....Bill Simeral.

Beside muscle issues dysphagia, heart and lung issues are sometimes present and make treatment more difficult. After losig 40 lbs of muscle in a week I was near death with autoimmune induced hepatitis, quadriplegic with a feeding tube. IVIG saved my life because even extreme doses of IV steroids wasn't working and my liver was almost gone. In spite of how severe my situation was I have made a one of a kind recovery and have led an active life of downhill skiing, hiking, golf and other activities despite my age...late 70s.

These are autoimmune diseases and are not contagious but AI diseases do run in families but it is extremely rare for different members of the same family to get the same disease. If you are having swallowing problems that could be from lupus or PM. I was able to rehab and get my tube pulled and eat and drink normally now. Typically the small muscles used in swallow are weakened so you need to see an ENT doctor and get a video swallow test. Another possible cause is that the muscle on top of your stomach has weakened and acid reflux is causing the dysphagia.

Bill
Posted 4/10/2018 4:30 AM (GMT 0)
Bill, Thank you so much for sharing your story and the information regarding polymyositis with me. I have had lupus NPSLE, Sjogrens and raynauds for 22 years. Our father had Crohns, RA and possibly lupus SLE , my son has lupus NPSLE and RA, and I have 2 sisters with lupus SLE and now a brother with polymyositis and his twin sister who is in the process of being tested. So, we definitely have an unfortunate genetic link.

I have been dealing with issues regarding hip pain that they cannot find the source to for about 6 months now. Prior to that I had to have a neurostimulator placed because of extreme nerve pain that has racked my body, my face, neck, arms, back and is now going down my legs. I have dealt with issues regarding gastroparisis and currently take medicine daily in order to keep my food down because the nerve in my stomach has stopped working. The gastroenterologist does said if this medicine stops working they will also have to place a “pacemaker” of sorts in my stomach to keep food down. I was down to 88 lbs at one point about a year ago.

I had no idea what polymyositis was until yesterday when I was advised about my brother, I had been chalking all these issues up to having to do with Lupus. I wish you and everyone on here the best for sure,

I’m falling asleep but I will definitely do some more research and let y’all know where I’m at with it.

Thank you
Melissa
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