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.
Greetings,
Been reading others stories and issues and wanted to share mine.
I was diagnosed with DM in 2005. I was extremely tired cor a couple weeks and finally went to an ER. A doc there came up with a guess that it was DM. Spent 4 weeks in a hospital where I was poked and prodded. A shoulder muscle biopsy confirmed the diagnosis. The 4 weeks were spent with IV prednisone to control my CPK levels. I then spent 2 months at home recovering some of my mobility. I returned to work, computer programming and network admin. 2 years ago it all became too much for me and I went on SSD and stopped working.
My skin isnt that bad but I am still noticably weak in the legs and arms/shoulders. Have to use 2 toilet set risers in my bathroom and a powerlift chair. Biggest issue is calcification in knees elbows shoulder blades. They can be very painful and when they open the produce "milk of calcium". First time my left elbow became bad doc put me in the hospital thinking it was infection. Was there for a week with IV antibiotics. But it wasnt infection just intense calcifation/inflammation.
Also been struggling with hypertension. No matter how much aerobic/walking exercise I do doesnt seem to help BP. Its in the 140/90 range. Worries me and I seem to be getting swollen ankles and feet. How do others exercise? Ive had troubles with it due to fatigue pain and injury. But last 8-10 weeks Ive been able to push it. I walk on treadmill for 25 mins at 2.8 mph and do about 30 mins stretching spread thu the day. That should lower my BP (lots of fruit and veg diet). But I dont think its having effect
On 30mg prednisone, 200mg plaquenil, 100 mg losartan(for BP), 90mg nifedipine (for BP). We have tried all the other meds that are meant to get me off pred but pred seems to be the only thing that doesnt have terrible side effects and a trully seems to help.
Thanks for being here. Can get pretty lonely when friendships dwindle. And this winter (I am in NE US) keeps me stuck in house for long periods of time. Got bored with WoW, MC and TV sucks so winters can be rough.
Thanks for the community :)
Been reading others stories and issues and wanted to share mine.
I was diagnosed with DM in 2005. I was extremely tired cor a couple weeks and finally went to an ER. A doc there came up with a guess that it was DM. Spent 4 weeks in a hospital where I was poked and prodded. A shoulder muscle biopsy confirmed the diagnosis. The 4 weeks were spent with IV prednisone to control my CPK levels. I then spent 2 months at home recovering some of my mobility. I returned to work, computer programming and network admin. 2 years ago it all became too much for me and I went on SSD and stopped working.
My skin isnt that bad but I am still noticably weak in the legs and arms/shoulders. Have to use 2 toilet set risers in my bathroom and a powerlift chair. Biggest issue is calcification in knees elbows shoulder blades. They can be very painful and when they open the produce "milk of calcium". First time my left elbow became bad doc put me in the hospital thinking it was infection. Was there for a week with IV antibiotics. But it wasnt infection just intense calcifation/inflammation.
Also been struggling with hypertension. No matter how much aerobic/walking exercise I do doesnt seem to help BP. Its in the 140/90 range. Worries me and I seem to be getting swollen ankles and feet. How do others exercise? Ive had troubles with it due to fatigue pain and injury. But last 8-10 weeks Ive been able to push it. I walk on treadmill for 25 mins at 2.8 mph and do about 30 mins stretching spread thu the day. That should lower my BP (lots of fruit and veg diet). But I dont think its having effect
On 30mg prednisone, 200mg plaquenil, 100 mg losartan(for BP), 90mg nifedipine (for BP). We have tried all the other meds that are meant to get me off pred but pred seems to be the only thing that doesnt have terrible side effects and a trully seems to help.
Thanks for being here. Can get pretty lonely when friendships dwindle. And this winter (I am in NE US) keeps me stuck in house for long periods of time. Got bored with WoW, MC and TV sucks so winters can be rough.
Thanks for the community :)
My diet is gluten-free and artificial sweetener free. I also avoid most refined sugar. In addition, I eat grass-fed beef and some fermented foods, and I make most meals and baked goods at home. These things work for me. Hopefully you will find something that works for you and helps to bring your BP down. A friend of mine with BP problems used to make juice from celery, apple, and garlic. It helped her for several years. Best wishes to you.
I do believe that obsessing over my BP does increase it :) But its hard to control that sometimes when you have alot of free time. I know that Pred increases BP too. So I am thinking its not my fault and that my exercise is good still. Funny thing with the prednisone is that I didn't have alot of the side effects of pred till the last year or so. And I have trouble keeping weight on, just don't want to eat like I used to. Before my disease I was 235 lbs, after I was 185 lbs and have stayed there. But there are many times when I loose a pound or two just cause Im not taking in enough calories, sometimes it seems my diet is about 1500 calories or so per day :( Never heard of beetroot, Ill investigate... My sister went gluten free and swears by it, gluten and sodium are pretty hard to avoid, but I do my best.
I am not at the point for needing calcinosis medications. Have you tried Colchicine for the calcinosis? Have you tried a bisphosphonate like alendronate which is also used for calcinosis prevention? I would be interested in knowing what medications you think have worked best since many of us will face calcinosis in the future.
Best Wishes. Keep us posted.
For me the "nodules" appear at places of repeated injury. So my elbows, because I lean on them and use exercise them. Same with knees. My shoulder blades are a problem because I lay on them and put pressure on them when I sit. Hips from walking. Recently I am hurting in my right forearm. I think its from overuse of a computer mouse.
Alot of times there is a knot under the skin that stays there and doesnt botther, but then in a 12 hr period it can inflame and open up, producing what I call pancake batter. Many times it takes a couple months to run its course and skin doesn't fully heal.
Big hassle to keep the openings clean, bound up and all. I try to help them push out the fluid. Sometimes it helps other times it doesn't. But if I don't, they can swell and really hurt in unbelievable ways.
My current doctor told me that Fosamax, Boniva, and Actonel are all in the biophosphonate family.
http://saveourbones.com/boniva-side-effects/
http://www.drugs.com/sfx/boniva-side-effects.html
Bisphosphonates in Chronic Kidney Disease; Balancing Potential Benefits and Adverse Effects on Bone and Soft Tissue cjasn.asnjournal.org/content/4/1/221.full
Rapid improvement of calcinosis in juvenile ...-PubFacts www.pubfacts.com/.../Rapid-improvement-of-calcinosis-in-juvenile-dermat...
GI problems sort of go with the whole soup that is happening in the body. I see a gastroenterologist on a regular basis for liver and intestinal (slow) issues.
I hope this helps. Best Wishes.