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.
Most of you know me from my topic "Still battling Polymyositis". Well, I have passed my evaluation and was accepted into Northwestern University research study. I wanted to wait before I decided to create a new topic to provide regular updates. The research I will be participating in is for people who have myositis; specifically, for those who have not responded to standard treatment methods.
What is the Reason for doing this study?
This is an experimental study designed to examine whether treating patients with high dose cyclophosphamide (a drug which reduces the function of the immune system) and AG ( a protein that kills the immune cells that are thought to be causing the disease), followed by return of the patients own previously collected blood stem cells will stop the progression of the patients myositis. The purpose of the high hose cyclophosphamide and ATG is to destroy the cells in a patient immune system. The purpose of the stem cell infusion is to evaluate whether this treatment will produce a normal immune system that will no longer attack the patient body.
I am schedule to go in for mobilization at the end of September.
What is the Reason for doing this study?
This is an experimental study designed to examine whether treating patients with high dose cyclophosphamide (a drug which reduces the function of the immune system) and AG ( a protein that kills the immune cells that are thought to be causing the disease), followed by return of the patients own previously collected blood stem cells will stop the progression of the patients myositis. The purpose of the high hose cyclophosphamide and ATG is to destroy the cells in a patient immune system. The purpose of the stem cell infusion is to evaluate whether this treatment will produce a normal immune system that will no longer attack the patient body.
I am schedule to go in for mobilization at the end of September.
Here a video of Jim's life who was an American pilot who almost succumbed to an autoimmune disease.
http://youtu.be/KpqAq_y9EVQ
Ok, this answer is strictly for those who have Polymyositis. I will ask the nurse if the procedure also applies to those who have DM. For evaluation, you have to go through extensive testing such as, special blood testing (25 tubes), MRI, cat scan of both femur, and pulmonary test. The next day, you will have to meet with one of the top neurologist at NW. He will review all of your medical records and decide if you will benefit from the study. You can also ask him any questions. Trust me. Him and his nurse assistant are very friendly
What test I hated the most? Good question. I would have to say the cat-scan. It took two hours and I couldn't move during the whole test.
Do they take insurance? Yes they do, but those who reside out of the country. You would have to pay out-of-pocket.
How long did I stay in Chicago for my evaluation and are you allow to bring your children. Well, I flew in on a Wednesday, stay one night at hotel next to the hospital. Finish my last test the next morning, and left Chicago that evening. Kids are allowed.
Thank you all for sending your questions and for your support. It's also nice to see you all on HSCT Facebook group.
I will continue answer everyone questions as fast as I can.
Peace & Love to you all.
Many you have chosen to remain anonymous and if you ask me. I don't blame you all. I have already promise to all of you to not reveal your names and to not engage with those who have already expressed their disinterest with HSTC. However,I was just informed that if you hit the ignore on the user that continues to attack this post. You won't see any of their comments any more.
Thank you my friends for all the love and support.
What do we always say to each other? Peace & Love.
The quote for today...
"Common sense is a flower that doesn't grow in everyone's garden."
Video below.
http://www.stemcell-immunotherapy.com/pub_vid_yt_devics.html
I haven't forgot you all and yes. I finally received my schedule and I will traveling back to Chicago on November 30th. If any of you will be traveling around those dates. Let me know.
DJ
I hope you all enjoyed your Halloween. Well this is it, I leave for Chicago on Nov 29 and will live in Chicago for two months. The best part is that my insurance covers the entire transplant, travel expenses. and lodging expenses. I know some of you have evaluation in December, so I can't wait to meet up. I have emailed some you in regards to what insurance I have, but if you want to know just hit me up at my email or Facebook.
See you in Chicago!!!
Edwin McCure - the great comeback. Watch the incredible video.
No more sickness and no more medications. Woo-hoo!!
I do not know of any health insurance that covers transplant, transportation and lodging expenses, so I am very interested in knowing what company does that kind of treatment. In Texas, many of us on the PPO type insurance got canceled for 2016 and we must go to an HMO system. Insurance here ran into financial trouble from covering the high costs of cancer treatments, so they are changing coverage for many of us. My medication formulary, doctor list, hospitals, are all a much smaller list that the insurance will cover. I can not use the hospital that is ten minutes from my home since it is out of network and will not be covered. I have a lot of concerns over any infusion coverage too.
Your post just does not sound like it is true to what the rest of us work with in insurance coverage and what doctors would normally approve for myositis treatments. How did you get this kind of treatment when insurance must comply with the affordable care act? We would all like to know the answer. Thank you.