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.
I have looked into the stem cell clinical trial that you will be doing. It does appear that many medications like cyclophosphamide, rituxan, steroids, and the ATG will be used along with the stem cells. It simply looks like a new method of trying traditional meds and including the stem cells to put a new boost in the immune system. I see a lot of things on the internet that show a move to stem cells as a new addition to standard treatment. My concern is the removal of antibody protection that the body has already built might put a patient at risk for illness. I am also concerned about using all the medications of cyclophosphamide, rituxan, steroid and ATG whether it is together or spread over time as maybe too much for the body to assimilate.
Our DMARDs are used for RA, Lupus, and many autoimmune diseases. There are many similarities to different autoimmune diseases so I guess these are standard treatments. The only thing I see as new and maybe promising is that ATG treatment that deals with autophagy. The stem cell part looks like an attempt at boosting the immune system in a new way.
I do not know about using the word "cure" when it comes to a medical treatment. A clinical trial is an attempt to see if new medications might be helpful.
I do wish you well with your clinical trial. Our bodies do take a beating over time with disease and medications. I hope things will work for you as anticipated. Keep us posted. Best Wishes.
It's nice to hear that your internet connection is back up. I agreed with you. All the medications that will be used in the HSCT scared me as well; especially, the cyclophospamide and ATG. I never taken these drugs before and I have been told by many doctors that Cytoxan is a powerful drug.
In regards to the antibody protection. I'm not really sure what will happen. I was told that the HSCT procedure will wipe out the entire immune system (except the bone marrow).
I also agree with you in regards to cure, because that word can be subjective.
I want to thank you for taking the time to conduct your own research. I respect that.
I know that this procedure will not be a walk in the park. That why I will update everyone with the good and bad.
I am happy to hear you so enthusiastic about your trial and I truly hope it works for you and you lead the way. Myself? I prefer to work with the Medical Advisory Board for the TMA and the TMA itself. They DO have a very strong interest in helping us feel better and find a "cure" for us. If they haven't talked about it, I'm probably not interested. but then again, I've never been an "early adopter" of new things and I don't take my remaining health lightly. I wouldn't want to negatively impact my well-being with some experimental treatment. If it is a clinical trial, it is still considered experimental.
Please let us know how it works for you. I would be interested in how you feel during the trial, once it is done, 6 months out, 1 year out and beyond. If you are onto something, we will all be anxious to follow suit.
It nice to meet you and I hope all is well with you. Im sorry if I gave off the impression that I was boasting, because that is not my objective. However, I have taken the time to speak with individuals who had Polymyositis and now are capable of doing things they couldnt do 6 months ago. When I went to Chicago for my evaluation, I was able to meet a nice young lady at Northwestern Hospital who also had Polymyositis. While conversing, she had demonstrated to me all of the things couldnt do before she undergone the HSCT. What better testimony is there?
Forgive me and I mean no disrespect when I say this. The TMA is not looking to cure those who have myositis, but instead, they are looking for ways to treat those who suffer from myositis. TMA are in alliance with the big pharma; they receive incentive from them and that is why you dont see anything in regards to stem cell under their treatment category.
Listen, doctors and drug companies make money by offering their patients and customers medical treatment. I know this may sound somber, but why would doctors and pharmaceutical companies would be interested in producing a cure? How is it beneficial for them? Pharmaceutical companies makes trillion of dollars and the doctors receive a kick-back for their contributions. Dont be nave and believe they are in the business of curing people. When was the last time America, Australia, England, and France produce a cure for any disease? No. They are in the business of treating people. Here the reason why Pharmaceutical companies hate stem cells. Its because they are aware they cannot patent something that derive from a person body.
In regards to TMA. This is what they say about stem cells Recent years have witnessed an explosion of stem cell "therapy centers" that purport to cure diseases, including many forms of myositis. The Myositis Association has received a number of inquiries regarding fat-derived stem cell treatments. These stem cell therapy centers promise to cure a myriad of diseases by using patients' own fat derived "stem cells." If I did not have the knowledge that I have now about stem cells, I would be scare out of my mind to agree to this procedure. However, I say shame on The Myositis Association for trying to bamboozle its audience. First off, no one should go to a therapy center to receive stem cells! Stem cells are done in a hospital where the patient is admitted for 3-4 weeks! Second, stem cells do not cure anything. The chemo is the cure by knocking out the immune system. No chemo, NO cure! Stem Cell centers will only give you stem cells and tell the patient in 3 to four days. You will get better. This is the main reason why stem cells is receiving a bad reputation. The TMA clearly know this, but because it is back by big Pharma. It will continue to use this information to scare people. In addition, they will say things like TMA's Medical Advisory Board cautions against the use of such treatments, since there is very little scientific data to validate the claims that these stem cell treatments provide a viable treatment option or cure. Really? Then explain why the NIH (national institute of health) report on stem cells being positive and fully support the 11 HSCT around the world?
They are only 11 HSCT centers (hospitals) around the world that the NIH and the international community recognizes. Dont be deceive!
I want to thank you for wishing me the best and I will keep you informed.
Work Cites
http://www.the-irf.org/autoimmunity/hospitals-performing-hsct.aspx
https://www.nhlbi.nih.gov/health/health-topics/topics/bmsct
Is there anyone whom i could report about the . slander that was written here that many doctors do not want to cure people. They want the CONTINUING INCOME STREAM from sick people getting prescriptions and continuing to come for doctor visits and treatment at hospitals.
I don't mean to sound like a neighsayer but my intuition tells me this is someone who works for a company looking to solicit support for their program. The strong personal notes against the TMA and the doctor's who are dedicating their lives to help us is a big clue for me.
While I encourage everyone to find what is right for them, and sometimes alternative treatments are, I do not choose to fight that way and I am very turned off by someone that boasts (yes boasts) their way is the only way.
I can say when I was see the experts at Johns Hopkins, I asked about Stem Cell. The doctor (who was on the board of the TMA) said there are some that think there is something there but nothing has proven effective yet and there are better treatments at this time that are effective. Maybe down the line we will learn different but for now, I'm curious but uninterested. Hopefully DJ will share his experience and help us learn more as he goes through his stem cell treatments. A dream of a cure is pretty amazing.
I find it hilarious and odd that you would say I work for a company to solicit to support for their program. Really? Is that your response to the factual information I provided or is it because, I am spreading awareness to people that there is another way to get better? You really lost me with that statement. Let me share with you 2 questions I receive the most from the people who visit and the ones who are members on this site. 1. Are they familiar with Recalcitrant Polymyositis? 2. Why are they not contesting the information you post with the links to articles that reveal supporting information? 3. Do they even read the articles you post with links?
Finally, in regards to the TMA. I have no problem speaking against them. They never did anything for me, but redirect me and others to third party companies.
As I have said before, my focus is helping those with Recalcitrant Polymyositis. Please let not stray away from that. To many people on here and those who visit are looking for help and I don't want to waste their time reading negative comments on my post. Many people read my post to receive updates on the procedure and on my well being. Please, I ask if you do not have anything positive or enlightening to share. Please do not comment.
Good Day
Knowledge is power. Information is liberating. Education is the premise of progress, in every society, in every family.
Kofi Annan
http://www.nbcnews.com/health/health-news/dr-sean-orr-accused-ms-misdiagnosis-scheme-back-business-n395716
Unite for sight said on their webpage " One problem that often plagues progress in global health is the slow translation of research into practice. Oftentimes, a disconnect exists between those who create the evidence base and those who are positioned to implement the research findings. The underlying problem is in the way in which the production of evidence is organized institutionally with highly centralized mechanisms, whereas the application of that science is highly decentralized. This social distance prevails because scientists are more oriented to the international audiences of other scientists for which they publish than to the needs of practitioners, policy makers, or the local public."
As I have said "knowledge is power. Don't be deceive."
Most of us discuss the medications that we take and our daily aches & pains. We do try to be NICE and supportive to one another.
Truthfully, when one of us needs Ivig or Rituxan it is usually with many questions and sometimes a sense of dread. I just do not get why you want to do a sales pitch for stem cells when you have not experienced the serious infusions involved in the clinical trial? It seems like you are too excited about the unknown.
TMA is a great resource for those of us with myositis. TMA does not treat anyone. Stem cells are not pushed by TMA, nor is any other treatment. TMA is simply a resource for information and support on myositis.
It is good business to have a continuing income stream. I am not the least bit bothered by any good doctor treating sick patients and getting paid.
I know all of us look forward to hearing about your clinical trial.
Best Wishes.
http://www.nbcnews.com/health/health-news/dr-sean-orr-accused-ms-misdiagnosis-scheme-back-business-n395716
http://www.truth-out.org/news/item/21365-six-drugs-whose-dangerous-risks-were-buried-so-big-pharma-could-make-money
This is the last comment I going to talk about Stem Cells and medications; because the people that come to view my post are not interested which one is better. They come to be informed. People are sick and medications have not helped them and they're looking for other options,so please. As I have said before, my focus is helping those with Recalcitrant Polymyositis. Please let not stray away from that. I understand they are people on this site who fully trust their medications and their doctors, but please understand. They're also people who do not want to continue taking medications for the rest of their life (or half their life), I am one of those people. If you're one the people who love medications, then this post may not be for you.
I would make it even clearer. I believe that the body can heal itself, so any treatment that corresponds to that I will fully support. However, I do not support the continuous of taking any medications! Period.. And please do not misinterpret my words by implying that I am suggesting people should not take their medications.
Finally, if there is a procedure that would eliminate a debilitating disease and I never will have to take single medication to keep it in remission or take pain med to deal with the pain. Then I want to know about it. People on this website have already expressed to me that they want to know about it.
I repeat! If you're one the people who love medications, then this post may not be for you and it's best for you to stop following. No disrespect, but if you don't like a show on TV. Just change the channel.
Let me say this. There is a difference between excitement and optimistic. I will not stop but continue to post articles and provide supporting information about HSTC and my updates when I go in for the procedure.
Have a Good Day
Knowledge is power. Information is liberating. Education is the premise of progress, in every society, in every family.
Kofi Annan "
As the man said "doctors and drug companies make money by offering their patients and customers medical treatment. "
This procedure HSCT , doctor who practice it also get money .
Knowledge is power. Information is liberating. Beware of promise that can't be fulfill,
Beware of Witch doctors.
I have provided the link below.
http://www.the-irf.org/autoimmunity/hospitals-performing-hsct.aspx
The article is very informative and goes into great details on how HSCT knocks out one's immune system to provide one with a new immune system.
However, as he said on his website "(Please note: the following article is quite long. Though it covers a very important topic and Ive tried to make it as accessible as possible, Id suggest getting comfy and grabbing a nice beverage before diving in)
http://www.wheelchairkamikaze.com/2015/06/recent-research-on-hsct-stem-cell.html?m=1
I do think success with any chronic illness is good disease maintenance. A good diet, exercise, correct medications and proper dosage amounts play a role in feeling well.
A hasty generalization is when someone says "ALL ____." A hasty generalization is a fallacy in logic and is not true. To say "all doctors" and "big pharma" fall into hasty generalization. It is like saying "all blondes are ____." My doctors would gladly give me a cure if there was a cure for my DM. Many diseases just do not have a cure, so it then becomes a matter of good disease maintenance. Truthfully, if you are concerned about doctors and pharmaceuticals making money, I think they would make a whole lot more money if there were medications that could actually cure. Your point about there is no cure because doctors and "big pharma" just want to keep making money does not work. My doctors care a great deal about me and they are good doctors.
I know that we all look forward to the outcome of your clinical trial. You have a lot of enthusiasm for stem cells. Quite frankly, I hope stem cells turn out to be another option to help control DM/PM. I would like to see medications that could help all of us stay out of the refractory stage and maintain a good long-term disease control.
Best Wishes.