In such an experimental study there is a Control group who is not getting the medicine but a placebo. Who promise you that you will get the medicine and not the placebo.
You are too young to take such a risk.

Hi DJSOUTHFL, The research study you describes sounds like a less expensive and experimental way of fighting refractory PM. Cyclophosphamide is terrific and a standard treatment for ILD. I have not heard of the ATG treatment, but it sound like a method for killing ALL cells and then infuse with replacement stem cells. Will the ATG treatment kill helpful autoantibody protection in addition to killing the bad proteins? Proteins are microbial bacteria.

The problem with ANY treatment is it only addresses killing proteins which are microbial bacteria. Get rid of microbial bacteria and a patient goes into remission for a short period. Our DMARDs kill microbial bacteria, parasites and fungi that adhere to red blood cells. The red blood cell with the infected microbial bacteria goes through the filtering systems of liver, lung, and kidney. The liver, lung, and kidneys are equally effected in systemic disease due to microbial bacteria types adhering to the organs. You are doing a treatment that does the same as a DMARD with an added infusion of new stem cells. In autoimmune disease, we build autoantibodies that protect from virus(es). I wonder if the type of treatment that you are doing might make you susceptible to not having autoantibody protection by killing those helpful immune cells? Will killing the cells in your immune system fail and go into rapid sickness? No immune system protection, then there is a susceptibility to viruses.

I am concerned that you might be removing the helpful protections that The Lord created in the body to stay well.

Treatments like Rituximab kills bad B cells and just those cells. Rituximab does not destroy the entire immune system and it allows the body to fight. Ivig boosts the immune system and it stops internal bleeding. I just do not think stem cells would be enough of an immune system boost after destroying ALL the cells in a patients immune system.

Answer the following questions to yourself...
What about your liver in refractory PM? Is your liver going to be able to handle this level of treatments? How is the pancreas and spleen for this level of treatment? Remember, it is destroying ALL the cells in a patients immune system.

I am on the edge of my seat looking at this one! You can tell we have a lot of questions. Best Wishes.

Michaelvi

I'm very familiar how experimental studies work, but to answer your question. The doctor informed me during my evaluation that I will be receiving the treatment. After I signed the disclosure form, I was given a date to come back.

There is a difference between taking a gamble and taking a calculated risk.

Hello Trpt1 and Everyone

First I want to say its nice to hear from you again. Second, I want to tell you that I know you are only looking out for me and I really appreciate that. I did not want to talk about this procedure until I could confirm that I would be accepted as a candidate to receive the treatment. During my stay at the Northwestern Medical, I will provide daily updates the good and the bad! Third, I want everyone to know that I am a researcher and journalist. Since 2006, I have been researching Stem Cells, visiting people who suffer from autoimmune disease, especially those with Polymyostits, so I am very informed. In addition, I been dealing with Polymyositis for over a decade and I have tried every standard treatment for it, so I am aware of the symptoms, the side effects, but more importantly the dangers of these medication; sadly, I have even lost close friends to Polymyositis. Rightfully, I know a lot of you have questions, and lot of you have concerns. Today, I will tried to answer everyone questions with facts oppose to my opinions.

Neurologists and Rheumatologist Lies:

1. HSCT is experimental. WRONG! HSCT has been performed on cancers more than two million times since 1967 and is currently performed more than 50,000 times every year all around the world for cancer. HSCT is NOT experimental; it is a well-established and well understood legitimate routine medical procedure performed daily. HSCT for MS and began over 15 years ago.

2. HSCT has not been shown to be effective for MS, autoimmune diseases and people relapse soon after treatment. WRONG! HSCT is so far the MOST beneficially effective demonstrated treatment to halt the underlying disease activity & progression of MS and other hematologically-rooted autoimmune diseases and people have now exceeded well more than a decade of complete disease remission.

3. HSCT is dangerous and will probably kill you. Super WRONG! Autologous HSCT for MS and other autoimmune disorders is safer than regularly driving/riding in an automobile

AUTOIMMUNE DISEASES CURRENTLY TREATED BY HSCT IN CHICAGO:
- Multiple Sclerosis (RRMS Only)
- Scleroderma (Systemic Sclerosis)
- Systemic Lupus Erythematosus (SLE)
- Chronic inflammatory demyelinating polyneuropathy (CIDP)
- Devic's Disease (NMO)
- Myasthenia Gravis (MG)
- Rheumatoid Arthritis (RA)
- Diabetes mellitus type 1 (if HSCT is performed within 6 months of disease onset)
- Wegener's granulomatosis
- Churg-Strauss syndrome
- Microscopic polyangiitis
- Relapsing polychondritis
- Pemphigus vulgaris
- Sarcoidosis
- Polymyositis - Dermatomyositis - Evans syndrome
- Stiff Person's Syndrome (SPS)

Facts:

Most Neurologist and Rheumatologist are very uneducated about HSCT. Of course they will be against this procedure. Their services won't be needed any longer (basically, they will lose a client).

Does Rituxain stop Polymyositis or any other autoimmune disease? No

Does HSCT stop autoimmune diseases? At the very minimum it will stop it, with a POSSIBILITY of reversal of symptoms.

HSCT has been performed since 1967 for certain types of cancers. More recently (about 1995) for autoimmune diseases.
Its FDA and IRB approved and many insurances cover the procedure; including Medicare!

The Division of Immunotherapy and Autoimmune Diseases (DIAD) at Northwestern University is the only center in the world devoted to a unique area of treatment and research that provides intensive immunosuppression and hematopoietic stem cell transplantation for patients with severe autoimmune diseases.

Many people do not know that Bone Marrow Transplant is Stem Cell Therapy! It been used over 40 years and because of this operation, it has saved countless of lives (cancer, autoimmune diseases).

HSCT is not cheap! At Northwestern Medical, the procedure can cost you anywhere from $125,000 to $200,000 000 and that does not including lodging, travel, and food expenses.
I repeat, Disease-modifying antirheumatic drugs (DMARD) do not kill microbial bacteria or parasites and fungi that adhere to red blood cells; medications such as AZITHROMYCIN will. DMARD are effective by suppressing the immune system and normally used for treating Rheumatoid Arthritis and is always given to patients who are ready to undergo surgery or transplant. I repeat, DMARD is nothing like HSCT. A 5 year old girl and a 65 year old man has received HSCT and did not endure any complications during and after the transplant.

What is HSCT?

HSCT is like rebooting your computer. HSCT restarts your immune system so that the immune disease doesn't attack your body anymore. Chemo destroys and wipes out your faulty immune system. Your new healthy blank stem cells that are transplanted back into you, are "Blank" so they have not got a specific job in body yet. These blank cells go where they are needed to repair and grow a healthy new immune system. The primary function of stem cell re-infusion is to rebuild your new immune system and expedite recovery. The stem cells are not the cure. The chemo is! No Chemo No Cure!

I would like to end by saying one of Nelson Mandelas quotes. Education is the most powerful weapon which you can use to change the world.

Remember Everyone.
"Every passing minute is another chance for the Creator to turn it all around.

Until now you described only the advantages of the method,
What are the disadvantages of the method, What should be careful when using it

Hi DJSOUTHFL, To begin, here is the site that explains the clinical trial that you will be doing so that everyone can see the medications and procedures involved:

Stem Cell Transplantation in Idiopathic Inflammatory... https://clinicaltrials.gov/ct2/show/NCT00278564

I looked into the ATG protein treatment. (Yes, proteins are microbial bacteria types. This is why our rheumys run the C-Reactive protein test and SED rate tests to see how high the levels of microbial bacteria are in the body.) The ATG is new research into cellular autophagy where cells eat themselves. Here is an article so everyone can look into this new research:

Hidden Behind Autophagy: The Unconventional Roles of ATG Proteins. www.researchgate.net/.../248382955_Hidden_Behind_Autop...

I just think the clinical trial part that is scary is NOT the stem cells. The Cyclophosphamide, Rituxan, Steroid, ATG treatments followed by stem cells are too many treatments at once. I would encourage you to please read the posts here about what patients experience with just one Rituximab or Ivig treatment. I do not see how doing all these poisons followed by a stem cell boost would be a good idea. Maybe if you could explain how they do this process with all these medications in a safe way, that might be helpful.

It appears the stem cells are getting used with other traditional treatments. I would not like to see stem cells as a replacement for traditional treatments.

DMARDs do suppress the immune system AND they kill microbial bacteria, parasites and fungi. Here are several articles that are helpful:

Mycophenolate Mofitil: effects on cellular immune subsets, infectious complications and antimicrobial activity www.ncbi.nlm.nih.gov/pmc/article/PMC2852585/

Methotrexate is Highly Potent Against Pyrimethamine-Resistant Plasmodium Vivax www.ncbi.nih.gov/pmc/articles/PMC3071051/

Bacteria, Fungi, Parasites and idiopathic Inflammatory Myopathy www.medscape.com/viewarticle/751211_4

Anti-Malarial Drugs-John Hopkins Lupus Center www.hopkinslupus.org/lupus-treatment/lupus-medications/antimalarial-drugs

The stem cells do not appear to stop disease. Our current treatments can slow down disease processes. The ATG treatment looks like it would be helpful for autophagy. Stem cells appear to be just an immune system booster.

Let us know how the process you are doing is safe. Best Wishes

My doctor letter to Dr. Burt

Mr. (purposely left blank) is a pleasant and intelligent 30 year-old male who I have had the pleasure of treating from the rheumatologic standpoint since 9/25/12.

Unfortunately, he has recalcitrant Polymyositis since 2004 despite treatment with a variety of medications including Prednisone, Imuran, Cellcept, IVIG, Methotrexate, and most recently IV Rituxan sub-Q Humira, and Acthar.

He has been experiencing increasing weakness and spontaneously falling over the last few months.
In addition, he has severe hypertension (with LVH on echo heart) and difficult to control diabetes (Prednisone induce). Despite these multiple medical issues, he has persevered and obtained a college degree.

Consideration was given for IV Cytoxan in 11/14, but I gave him a trial of Humira which was discontinued due to him feeling worse.

Please evaluate him for an alternative treatment regimen including stem-cell protocol as he is experiencing worsening quality of life and has failed multiple agents.

I did not have to post my personal health info that my doctor took the time to write on to this site, but I did it to make a point. When you have been on the standard treatments and medications that require infusion for quite some time. Here is what nobody will tell you about the severe side effects, but I will. Eventually, it will affect your heart, it will affect your eyes, and then it will start affecting your lungs. In addition, the fact that youre taking immunosuppressants drugs. You will always be prone to getting sick. Because of the prednisone, you will eventually develop insomnia (making it difficult to go to sleep), and will have to start taking Ambien just to go to sleep. In addition to the prednisone, your blood sugar will become abnormal and you will have to take insulin to control it. As I have said, I been dealing with this for over 10 years.

and that why I am writing a book to spread awareness.
.

I went to see Dr, Burt in Chicago last month for my evaluation. He was shocked when he reviewed the medications I had taken for Polymyositis. Those Anti-TNF drugs such as Remicade, Humira, and Rituxain treat many diseases including Rheumatoid Arthrits, but they are not standard treatments for PM. If you go on to their website, you will not see PM or DM listed as a treatable disease. Can you explain to me why? Perfect example of doctors treating PM patients as if they suffer from Rheumatoid Arthritis this has to stop! Now, Im not saying a persons condition wont improve. I know many people felt some relief after taking Rituxain, but I also know many who almost lost their lives in the infusion room while receiving it (They dont tell you this). You said The Cyclophosphamide,Rituxan, Steroid, ATG treatments followed by stem cells are too many treatments at once; yet, no one has die from reeving all these treatments and all of the treatments you mentioned are not done at the same time. Please help me because I am confused. Are you suggesting you would rather support and take a drug to treat your disease; yet, your disease is not even listed on the company website as being a disease that the company treat? Now that scary!

Let put this in better perspective to bring logic into this. The transplant is around $125,000 a one-time treatment that is able to reverse a disability and the patient will never have to take medications ever again. Just with that statement alone. Is it really that difficult to see how the benefits outweigh the risk? Would you rather keep taking poison for x amount of time (months or years) or would you rather take it for two weeks and when finish. You will never have to take another poison (medication) again?

It is a win win situation. Its a win for the insurance company, and its a win for the patient. The insurance companies save money capered to continuing IVIG or very expense Anti TnF medications. Its a win for the patient because he/she does not have to continuing having to worry about taking toxic medications such as, Cellcept and Methotrexate; however, this is what I find odd about one of your questions in regards to toxicity. You had expressed concerns about the toxicity of the medications I would receive while receiving my stem cell transplant and what kind of effect will it have on my liver. Really? Do you see where Im going with this? If you were to ask me, Im surprise I still have a liver after 10 years suppressing it with all the poison I was instructed to take I being for real! In the end, if a 5 year old can go through chemo, ATG, and steroids. Im pretty sure a majority of us can handle the operation too.

Now back to the DMARDs. I only discovered one of the several DMARDs that is an antibiotic Minocin, yet it is used for RA. Like I said, Rheumatoid Arthritis With Disease-Modifying Drugs are not used for treating patients with bacteria, fungus, or parasite. They are used as immunosuppressants and normally they are not used as a stand-alone treatment. Its usually combine with another immunosuppressant such as Methotrexate to provide a more potent affect in suppressing one's immune system. Even more, DMARDs are not consider standard treatment for patients with Polymyositis. That not scary to you? Taking a medication that was created to treat RA, but youre taking it to try stop your muscle from wasting.

Im still confuse why you posted a link for Anti malarial drugs which talks about why they are used to treat Lupus? You lost me. Mycophenolate = Cellcept (immunosuppressant) Lupus, RA, and PM only have one thing in common. All three are autoimmune diseases and that were the similarities of three diseases end. Rheumatoid Arthritis is not Polymyositis or vice versa.

The time is now and we need to educate people better.

Hello Trpt1

I want to first tell you. If my last response offended you in anyway. I would like to apologize to you. Sometimes when I am speaking or writing on something I am passionate about. Sometimes I take off. I know you and everyone on here are only looking out for me and I appreciate that.

Thank you for providing the links. When a person has been accepted to partake in the study. Dr. Burt gives the person a consent form and authorization for research that goes into great details on what the patient will expect such as: the risk, pre-treatment testing,pre- screening procedures, and the treatment itself.

Once again, I apologize if I came off offensive towards you.

You described the treatment as a Win-Win situation, but as you know in medicine you cannot predicate what will be outcome of the treatment.
In his website Dr Burt is not telling what is the % of success . So you are going to pay 125,000$ and not reciving a promise that you will not have to continuing having to worry about taking toxic medications such as, Cellcept and Methotrexate.

Hello Michaelvi

You had said "You described the treatment as a Win-Win situation, but as you know in medicine you cannot predicate what will be outcome of the treatment."

With medicine, you cannot predicate a 100% the result of anything. However, using statistics, we can determine how many people have benefited from receiving - a given - treatment (clinical trial).

You had also said the following "In his website Dr Burt is not telling what is the % of success . So you are going to pay 125,000$ and not reciving a promise that you will not have to continuing having to worry about taking toxic medications such as, Cellcept and Methotrexate."

My friend please don't take this as me trying to demean you in anyway, but I will like to inform you the difference between taking a Gamble & taking a Calculated Risk.

In calculated risk - you consider all the odds, justify the risk, and then make an intelligent decision based on conservative judgement.

A gamble (as you are aware) - is something over which you have no control and the outcome is just a roll of the dice.

If you have ever been prescribed Cellcept, Methotrexate, or Immuran. You are aware that your doctor will have to draw blood from you every 2 to 3 weeks. Do you know why? Are you aware that Methotrexate can cause serious or life-threatening side effects on your liver, lungs, or kidneys and that is why your blood is tested so often. Do you know that some people have died from taking these drugs everyday by accident? I didn't even mention the side effects of DMARDs that are used in conjunction with the medications I mentioned above.

The reason why the patient benefits from HSCT is because it is not a procedure he/she will need to have done repeatedly (one time); whereas, the medications I mentioned above. The individual will have to continue keep taking those medication hoping one day their disease will go into remission. That is the million dollar question. When? While he/she is waiting, I can only pray that their body doesn't suffer any severe damage from taking Cellcept, Immuran, and especially Methotrexate. Beside prednisone, there is only one medication that brought a little relief to me and the name of the medication is called H.P Acthar. The reason why I was not hesitant of taking this drug, because the company list Dermatomyositis and Polymyositis - on their company website - as a disease they treat and I never had any side effects when I was on that medication. Not one...

With that being said, I hope you were able to distinguish the difference between a calculated risk and a gamble with the supporting information I mentioned above.

In regards to Dr. Burt website not providing his success rate. You must of went to the wrong website. Please select his website link at the bottom and under News & Publications. Please read his articles and publications.

In regards to the win-win comment I mentioned in my previous post. A recent news article that came out on February 10, 2015 had addressed and validated this claim. I also provided you the link below.

In the end, I welcome you and thank you for bringing up some good questions. I hope, I was able to address them all.

Take Care,

The Links....

http://www.stemcell-immunotherapy.com/index.html

http://www.acthar.com/other-indications.html

http://fox17online.com/2015/02/09/doctor-calls-life-changing-stem-cell-treatment-a-win-win-for-patients-and-insurance-companies/

I was prescribed, Methotrexate, and Immuran, for the past 8 years I am on Methotrexate , my doctor draw me blood work every 2 month, not as you wrote..
Every medication can have life-threatening side effects also Stem cell therapies.
You are not demean me. I am just having fan reading what you are writing here (quoting whole paragraph) from Dr Burt website.

Hello Michaelvi

If the medications you're taking has brought you relief and you're in remission. God bless!

The purpose of me joining DailyStrength and other support groups is to spread awareness. Especially for the people who have tried every single medication that their doctors has recommend, but have felt no relief and yet, they're still suffering. In addition, for the people who do not want to continue taking poison for 7 to 10 years (no offense) and looking for a way to quickly put their disease into remission.

I have received countless of emails, spoken to many people from this support group (not just people with myositis) over the phone. As I have told them. They know HSCT is going to cut their income tremendously. Truthfully drug companies and 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.

But I figure if "JUST ONE MORE" hears about HSCT and comes and gets cured then someday they might remember "some guy I don't know his name mentioned HSCT and here I am today, CURED!"

God Bless!

You wrote that " Truthfully drug companies and 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."
If you compare the cost of MTX against HSCT and rely on what you wrote that " doctors do not want to cure people".
The conclusion is to invest less money in Medical solutions,
I am sure you are not taking a gamble, but your calculated risk is not well Calculate.
I wish you to be cured in any way you choose
God Bless!

Hello Michaelvi

Multiple members on this support group had sent me emails in regards to what you had said and I had to come to the site to see if it was indeed true. It sadden me that your last post reveals that youre deliberately trying to hoodwink the people that read my post by implying that I believe that a single medication such as MTX will cost more than a HSTC procedure.

It is evident that youre not posting to be well informed or to ask genuine questions. Sir, I want to make one thing real clear with you. I did not join this site to promote negativity or engage in a debate with anyone. Im not here to force anyone that he/she should stop taking their medications and start taking something different. As I have said, my objective is to spread awareness to everyone. Youre entitle to your opinions, but I appreciate that you do not delude or use deflection. My concern are for the people who have recalcitrant polymyositis and are looking for help. I do not want to take focus away from that.

Best of luck in your future endeavors.

Same to you