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.
http://www.nationalpost.com/m/wp/blog.html?b=news.nationalpost.com%2F%2Fhealth%2Fstem-cell-treatment-that-reboots-entire-immune-system-might-be-ground-breaking-ms-therapy
A new stem cell treatment that reboots the entire immune system is enabling multiple sclerosis sufferers to walk, run and even dance again, in results branded miraculous by doctors.
http://www.nationalpost.com/m/wp/blog.html?b=news.nationalpost.com%2F%2Fhealth%2Fstem-cell-treatment-that-reboots-entire-immune-system-might-be-ground-breaking-ms-therapy
Since 2008 the so-called HPV vaccine, that protects against cancers caused by human papillomavirus (HPV) infection, has routinely been given to 12 and 13-year-old girls all over the world, but an increasing number of girls say they suffer from side effects.
https://screen.yahoo.com/hpv-vaccine-thousands-suffer-serious-092208211.html
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3100525/
First, I want to say to you. I appreciate you going out to conduct your own investigation/ research. However, I need to point out some tips for you when conducting research. Just think of it as me providing you a dose of constructive criticism.
When you post an article to support or validate your claim (especially an article that involves health). It's imperative the source you provide -NIH- contains data that is relevant (any article that is more than a year old is no longer deemed relevant). Let me explain, if you were enrolled in college, a professor would have dismissed your argument because of the time-stamp of your source ( the article) -
Received: 5 Feb 2008
Accepted: 14 May 2008
Published online: 07 Jul 2009.
You provided a link that reveals an article supporting information that was written 6 years ago. It holds no weight, because it's too old. Can you imagine how many breakthroughs that have came out since that article have been published?
Second, if you have read the entire article ( which I beg to differ). You would have known that this was an old experimental study. Even if you didn't read the entire article. Just by reading the words within the title - advantages and disadvantages - it should have given you a hint, a clue, or a heads up; that a clinical trial was performed, and the authors have reported and concluded the researchers findings within the article that was Published online: 07 Jul 2009.
I will give you the benefit of doubt and say you didn't attempt to look at the publish date...
However, here is one of the right ways to publish relevant information to validate any given report..
On March 10, 2015. An abstract released by the NIH conducted a clinical trial - Autologous hematopoietic stem cell transplantation (HSTC) in multiple sclerosis: a phase II trial - which concluded by saying " Intense immunosuppression followed by AHSCT is significantly superior to MTX (methotrexate) in reducing MRI activity in severe cases of MS. These results strongly support further phase III studies with primary clinical endpoints.
Work Cited
http://www.ncbi.nlm.nih.gov/pubmed/25672923
Neurology. 2015 Mar 10;84(10):981-8. doi: 10.1212/WNL.0000000000001329. Epub 2015 Feb 11.
"Every passing minute is another chance for the Creator to turn it all around."
Date Off Article Jan 20, 2015
Source - Sciencedaily (The JAMA Network Journals)
Summary of the report.
Results from a preliminary study indicate that among patients with relapsing-remitting multiple sclerosis (MS), treatment with nonmyeloablative hematopoietic stem cell transplantation was associated with improvement in measures of disability and quality of life, according to a study.
http://www.sciencedaily.com/releases/2015/01/150120120640.htm
" The best advice I ever got was that knowledge is power and to keep reading"
By David Bailey.
Stems cells will not be replacing any medication used for DM/PM. Stem cells are going through the trials to use with current DM/PM medications. Stem cells are just immune system boosters. Cyclophosphamide is a good medication that is often used for ILD to help the lungs.
I think Michealvi's post was a good point about the cyclophosphamide too. I appreciate his post.
The bottom line is medications are between a doctor and patient. I do not understand why you feel the need to convince everyone on a website about the merits of stem cells. A doctor would be the one to determine what is appropriate treatment for a particular patient. Medications also work differently for each person too.
I am glad that you are enthusiastic about the stem cells that you have never tried. We really do not need the cheer leading of "Give me an S..give me a T..give me an E..." etc.. Our doctors determine what is right for each of us.
I hope your treatments for refractory PM turn out to work well for you.
Best Wishes.
you don't need to inform me about the medications that are involved in the HSCT procedure. Im been studying stem cells since 2006; even more, when accepted for Dr. Burt HSTC, he provides his selective candidates a 20 page disclosure that goes into depth on about the procedure such as; the side effects, the medications, the difference nurses that will provide care; what food can be consumed, the length of the treatment, the follow-ups, and the expectations after the transplant. This is something you don't have, because this information is not posted on his website or on the clinical trial.gov.
If you dont like what I am saying please stop following. Youre not going to stop me from spreading awareness, because to many people on this site have expressed to me that want to know more about it.
Now, let continue with the real matter at hand.
Helping people.
What a incrediable interview. Very informative! I know you all will like this one.
Continue to email me! I love reading everyone's feedback. In addition, I want to take the time to say. Thank you all for your support. I really appreciate that.
Just remember. I do it for you.
http://www.stemcell-immunotherapy.com/audio/Hematopoietic_Stem_Cell_Transplantation_for_Multiple_Sclerosis.mp3
http://www.nature.com/pr/journal/v71/n4-2/full/pr201157a.html#/trm
http://fox17online.com/2015/01/06/blue-cross-overturns-decision-approves-stem-cell-transplant-coverage/
Happy Sunday.
I been so busy with back to back meetings, so if I did not get back to you. Just know it was not intentional.
I know many of you have asked if I received a schedule date to return back to chi-town and the answer is no. However, I was told that the nurse will likely schedule me to come back during the first week of October, so that cool. In addition, some of you have asked about transportation. Before I left for Chicago, I heard traffic sucks in downtown Chicago. Thank god I took the train and you can catch at the airport, I took the orange line and red line to get to my evaluation, anyhow, it is so easy to navigate around downtown. Trust me you all.
Everyone, it's easy for me to just answer your question on here, instead of responding back to ever email. However, if I didn't answer your question on here. Shoot me another one with red flag.
Finally, it's nice to hear that some of you have completed the application and waiting for a response from Dr. Burt office. Wow! I'm so speechless. Words cannot express how I felt. It really means a lot to me, but I'm so happy for you all. If you happen to receive an evaluation date while I'm still in the hospital. Come see me or keep me inform on when you're coming. Some people are coming for their 6 month follow up and we plan together and eat!
Well GN
You all are amazing!