Anybody have experience with Polymyositis?

lillymom · Jun 22, 2011

I work with pt's that have this and you definately need to see a rheumatologist if you haven't already. There are not many people that have this but most are on continuous low dose prednisone therapy. The other options don't seem to work as well or have side effects that people do not want to deal with. Here is a link to the American College of Rheumatology about this condition. Our office pretty much does everything the link says.

Like almost all autoimmune diseases it is hard to say what will work for an individual and what the exact symptoms will be because they vary greatly among each person with the exception of the muscle weakness. Sorry I couldn't be of more help.

http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/myopathies.asp

dthfytr, ADN, LPN, RN, EMT-B, EMT-I · Jun 22, 2011

Thanks for the reply.

I've got a Rhematologist. She thinks it's hysterical that I'm a walking encyclopedia of Emergency/Trauma medicine, but get all nervous when she talks about "tumor necrosis factor blockers" like Humira or Cemzia, or other intricacies of the immune system I've never dealt with in the ER. Like I've always said, healthcare is a gift, better to give than recieve.

I'm hoping to get feeling physically stable enough to work part time, or maybe do tele-nursing.

lillymom · Jun 22, 2011

Yeah, When you work or have these autoimmune conditions it a different world. I am not in nursing school yet but I have an idea that they don't cover that in nursing school or medical school as much as other diseases. The docs prescribe those medications all the time but there are many patients who do not like the thoughts of them, with most being cancer drugs and all but they work very well for most people. Just have to find the right drug for the right person.

I must say that the majority of pt's in our office are on disability but there are also quite a bit who manage to work with the help of FMLA or part-time employment. I hope that you can get your condition under control and are able to do anything that you would like.

hopefulwhoop · Jun 22, 2011

I had a patient 2 weeks ago who was admitted for IV therapy for her polymyositis. She was admitted for IV infusions of an immunoglobulin.

dthfytr, ADN, LPN, RN, EMT-B, EMT-I · Jun 22, 2011

I'm on SS Disability, not eligible for Medicare for another year, but too "rich" for medicaid. My last employer just raised my COBRA insurance premiums from $350/month to $1100/month. I can't possible afford $1100/month which I guess was the whole point of raising the premiums so high. After a lifetime as a caregiver, now I have to pay cash for my meds and Dr visits. Just try to get a Dr's office visit without insurance!!!

It's teribly humiliating knowing that your life is worth nothing. You can only live if you have enough money, and being too sick to work makes for a real short story.

Thak you all for your feedback.

lillymom · Jun 23, 2011

I do alot with insurance with patients and it is ridiculous. MOst of the medicare pts can't afford the TNF's that they need for the disease so they try to get outside assistance. Most of them cost $2,000 per month and who can afford that? COBRA, as well as all insurances, are getting more ridiculous all the time.

It's really sad when someone who has spent the majority of thier life helping others and providing them medical care can't get adequate care themselves. I am terribly sorry for your troubles and hopefully it will get better soon.

dthfytr, ADN, LPN, RN, EMT-B, EMT-I · Jun 23, 2011

I do alot with insurance with patients and it is ridiculous. MOst of the medicare pts can't afford the TNF's that they need for the disease so they try to get outside assistance. Most of them cost $2,000 per month and who can afford that? COBRA, as well as all insurances, are getting more ridiculous all the time.
It's really sad when someone who has spent the majority of thier life helping others and providing them medical care can't get adequate care themselves. I am terribly sorry for your troubles and hopefully it will get better soon.

It really helps knowing at least one person knows how I feel. Thanks. If you hear of a gringo nurse robbing a bank in El Paso to get healthcare, you heard it here first.

FlyingScot, RN · Jun 23, 2011

My dad has dermatomyositis. They first thought he had Lyme disease so it took awhile for them to figure it out. It was a very rough course for about 6 months. Thankfully he is in remission and on a very low dose of steroids and Methotrexate. Biggest change for him was he had to sell his sailboat since sun exposure is an absolutely no-no. I absolutely won't give you medical advice but PM me if you have specific questions about living with this disease.

Judith401 · Jun 23, 2011

I was diagnosed with dermatomyositis since the age of 12. I am now 25 and living with this disease has definitely been a challenge. Some days are better than ofthers. I responded well to prednisone and have been on and off for 13 years. In addition to steroids, I also took Imuran, MTX and plaquenil. As if having dermatolyositis wasnt hard enough, you still have to seek treatment for the side effects associated with the meds that have been prescribed, especially steroids. For me, the disease would go into remission but flare up during stressful times so it is important to avoid stress. I also found that getting enough sleep, stretching, walking and sunscreen also helped. It is also important to have a good support system for days when you just don't have the strength to go on. The healthcare thing definitely sucks. I had health insurance through my work but had to cut back to part time. My health insurance was cancelled and when I sought out treatment for the months I was uninsured, I felt like there really was not a place for me to go. I just didn't feel welcome seeking treatment as an uninsured patient. I now get health insurance through my school. Polymyositis may fall under the umbrella of muscular dystrophy diseases. MDA is a great organization and they can help with medical needs too. Good luck to you and let me know if you have any questions!

NeoPediRN · Jun 23, 2011

I had a patient with this who received IV methotrexate weekly and PO methotrexate daily. This pt went into remission and recently started walking.