Scleroderma, The Proven Therapy That Can Save Your Life

I have a friend who is in total remission from scleroderma. She heard about a therapy developed by Dr. Tom Brown in Boston. Dr. Brown began treating patients who had Reumatoid Arthritis with Minocycline. They all began to have their RA reversed and went into remission. Dr. Brown noticed that a few of his patients who had RA also had scleroderma and they, too, were reversing scleroderma and going into complete remission with Dr. Brown's Minocycline therapy. Eventually, Dr. Brown passed away, but my friend saw his colleague, Dr. David Trentham, who started her on Minocycline therapy. She was on it for two years and is today completely healed of scleroderma. There is a book which tells the whole story about Dr. Brown and his therapy entitled, "Scleroderma, The Proven Therapy That Can Save Your Life," by Henry Scammell. There is also a foundation associated with this effort called The Road Back. Their website is www.roadback.org. I registered at this website and they sent me a list of doctors in my area who practice this therapy. I had my first visit today and will start treatment today. It is a long-term therapy and the book explains why. I hope to be on the road to wellness soon.

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23 replies. Join the discussion

I am happy for your friend . However I do not reccon
mend dr. trentham . I went to him for 9 years . Makes bad decisions . did noxrays for 7 years . I asked for pain meds as I was in agoy . When he finally got aroudto doing xrays . my hips were so badly damaged I need 3 hip replacements . never went back to him . He never had any compassion for the amount of pain that I was in he just fluffed me off . biggest mistake That I have made to date. I also have lupus,sjogrens ,and severe psoriasis . ,as well as rheumatoid arthritis . he made me fell like a hypochondriac . find someone else.
cathy from ma

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i camn only type with one hand and thatis why sp and typingis so bad . severely crippled from arthritis .
cathy from ma

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This type of therapy is very controversial and has never been proven to work. I am not saying it won't work, just that it does not have any medical research to back it up even though it has been around for over twenty years.

There are a lot of threads on this site about this type of therapy. If you read them, you will see that there are a lot of strong opinions for the positive and for the negative about using this type of treatment.

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Cathy - Why on earth would you continue to see a doctor that you were that disatisfied with for nine years?

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You will be relieved to hear that Dr. T . has retired.He was not really an AP doctor but a regular rheumatologist
that would give you a minocin prescription if you asked for it.He did have many patients on it who did quite well but he never studied up on micoplasma or any other infection that could cause one to come down with SD.He had no idea that Lyme was so often involved in rheumatic diseases until many of his patients went back with proof they had it.He was as blind to the effects of it as most doctors.

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I read the Arthritis Breakthrough book several years ago and was so hopeful. My rhumy gave me minocycline, which I took for about 4 years. Following my hip replacement in 2010, it was determined that the minocycline had turned my bones black/green and made them very dense, and not particularly in a good way so I stopped taking it.

My husband drove me from LI to Boston and I had a consult with Dr. Trentham in 2006, just after I started taking the minocycline. What a waste of time!!! He barely examined me, and did NOT look at any of the reports I brought. Honestly, he seemed dazed and confused. He suggested a follow-up appt, which of course I did not do. Glad to hear he is retired!

Some people report great results from minocycline, and many of them started on it very soon after diagnosis. I had scleroderma or symptoms of it for several years before I ever took minocycline, and unfortunately it did not help me.

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I believe the Harvard studies involved minocycline Being used to treat patients with diffuse scleroderma. Several patients had their symptoms completely reversed. That is more than I have been able to read about with the "traditional" therapy of prednisone and other drugs that have more side effects. I,too, decided to try the minocycline and achieved almost total remission. Only had a little Raynauds in my hands and feet. I decided after about a year on the minocycline that I was cured and stopped taking it. After about 6 months, I started having hip pain and severe muscle spasms. Some of my other symptoms started to return so I decided to start back on minocycline. My muscle spasms went away and my hip pain got better so I know the minocycline was the reason. I never took anything else other than my dermatologist put me on doxycycline before I started the minocycline.

I do believe that I have some micoplasma that caused my disease. As most doctors will tell you there is no cure for SD but i believe you can keep it in remission. It doesn't make sense to me to wait until you have severe progression of the disease to start treatment. My sister did the traditional treatment and the meds made her sicker than before treatment. She had Sjogrens and I believe diffuse SD. I have the diffuse SD. Also had some skin involvement on arms and face...all gone now.

I can't say enough how grateful I am that I found the Roadback foundation.

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http://www.sclero.org/medical/treatments/clinical-trials/completed/negative /minocycline/a-to-z.html


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Scleroderma Clinical Trials (MAIN MENU)
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Overview
Alpha Interferon
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Chlorambucil/5-flourouracil
Gamma Interferon Minocycline (Antibiotic)
Penicillamine, Cuprimine, Depen
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Negative Results for Scleroderma: Minocycline (Doxycycline) Antibiotics
Warning: Minocycline (doxycycline) treatment has been proven to be ineffective for the treatment of systemic scleroderma by reliable scientific study. See Disclaimer.
Research Update Research Published in Lancet
Introduction Study Recap
Dr. David Trentham Study Limitations
Research Update
Minocycline is not effective in systemic sclerosis: results of an open-label multicenter trial. The degree of change in the MRSS (modified Rodnan skin thickness score) was similar to that expected in the natural course of this disease. Based on these data, minocycline is not an effective therapy for SSc. PubMed. Arthritis Rheum. 2004 Feb;50(2):553-7.
For current treatments and clinical trials for systemic sclerosis (SSc, or scleroderma), please consult a scleroderma expert or see:
Scleroderma Treatments and Clinical Trials
Scleroderma Symptoms and Treatments (Look up individual symptom pages)
Scleroderma Newsroom
Drug-induced lupus. Antibodies to ds-DNA are a rare finding and would tend to favour a diagnosis of idiopathic SLE. They have been associated with the use of tumour necrosis factor inhibitors (ant-TNF) and minocycline. Aguirre Zamorano MA. (PubMed) Med Clin (Barc). 2010 Jun 19;135(3):124-129. (Also see: Lupus)
Minocycline-induced cutaneous polyarteritis nodosa. Although minocycline is an effective medication with a wide variety of clinical uses, clinicians must be aware of its potential side effects including autoimmune-related disorders such as polyarteritis nodosa or systemic lupus erythematosus. (PubMed) J Clin Rheumatol. 2007 Jun;13(3):146-9.
Minocycline-induced central nervous system-pulmonary hypersensitivity syndrome. Reported side-effects include hypersensitivity pneumonitis, drug-induced lupus, Antineutrophil Cytoplasmic Antibody (ANCA) ANCA-positive vasculitis, and other autoimmune syndromes. We report the second case of severe central nervous system-pulmonary syndrome in a patient taking minocycline, which required high-dose corticosteroid therapy. PubMed. Int J Dermatol 2003 Apr;42(4):316-7.
Introduction
On 5/10/98, Dr. David Trentham announced the results of a Minocycline study in the treatment of diffuse Scleroderma, in Boston, Massachusetts at the International Society for Rheumatic Studies. Simultaneously, a book about it was released by Henry Scammell.
Dr. David Trentham
Dr. Trentham is chief rheumatologist at Beth Israel hospital in Boston. The Minocycline Study was sponsored by the Road Back Foundation and the NIH (National Institute of Health).
Research Published in Lancet
This study was published in "Lancet", Vol. 352, Issue 9142, on November 28, 1998.
Study Recap
From my reading of the book Scleroderma: The Proven Therapy That Can Save Your Life by Henry Scammell, it seems that 11 people were enrolled in the study, which used (oral) Minocycline for patients with early diffuse Scleroderma. Progress was tracked only by skin scores. Five people dropped out of the study (two died of an unrelated cancer, two had Scleroderma kidney, and two people failed protocol. Of the six who finished the study, all showed improvement in skin scores and four were considered "cured."
Study Limitations
It was a very small sample of patients, and there was nearly a 50% failure rate in completing he study, which is very high, and two people (20%) died of Scleroderma renal failure within the first few months who had no evidence of renal disease beforehand.
This was not a double-blind test. Both the patients and the doctor knew what medication was being used. No measurements were taken of internal organ involvement. The skin scores it was based on are a purely subjective measurement. The natural course of Scleroderma is for the skin to initially harden, and then begin softening.
Many treatments have initially seemed promising for Scleroderma which in larger studies were proven to be of no benefit. The most recent example of this is Penicillamine (Depen), which was widely used for the treatment of Scleroderma in the U.S. until a large, double-blind study proved it to be of no benefit.
Hotline: Minocycline Treatment for Scleroderma. The study was sponsored in part by The Road Back Foundation and NIH. The results of this small open label study must be interpreted with extreme caution. These results do not represent a "cure" for scleroderma. American College of Rheumatology. May 14, 1998.

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Well I guess beauty is in the eye of the beholder. Both mino and Dr. Trentham's care worked wonders for me. He was my third rheumy in less than a year, the first was a total waste of time, the second very good but he had no interest in mino, then I switched to Dr. Trentham for a six month self imposed trial of mino. If AP had not worked I would have gone back to rheumy #2 probably. I have a PCP that is very good and is charge of my general well being and between he and Dr. Trentham I was able to regain my former life. Looking back I feel that I have been suffering from SD symptoms on and off for at least thirty years before SD my really took off. We all need to be our best advocate, if something is not working move on and try something else. For me all options were on the table. Not every program works for everybody. I find most (not all) of the people that are critical of AP have never been on it and would never entertain using it, so I look their negativity from that angle. We could fill pages and pages with the side effects, downsides, and the negative results experienced by SD suffers on traditional SD meds too. I don't revel in anothers failure to get well. Whatever works for any SD suffer in my view is a wonder drug. In short it is up to each of us do our research and make our own choices.

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The mino works for me. I will continue taking it because it does. Never any where is a claim made that mino cures SD. So far there is no cure, but this is the closest thing to it for me. I believe it could have saved my sister if her doctors had been open minded enough to try it. I did try to get him to try it, but he refused. Maybe it wouldn't have but it at least it was worth a try. She became sicker immediately after taking the cancer drug and high doses of predizone to mention a few. There was no natural harden of her skin initially as she had diffuse with little skin involvement.

Well said, acksd.

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Sigh. Yes, each of us needs to do our own research. Yes, I have seriously entertained trying AP but decided against it.

Many on this site have tried it unsuccessfully but don't speak up anymore because of personal attacks and flame wars.

I don't normally speak up unless someone gives out information that is misleading or they recommend a doctor that others have had a very bad experience with (Dr. Trentham). i.e. Harvard study as a scientific reason to use AP. Or, as the original post stated, "completely healed" of scleroderma due to AP.

I think there has to be a balance of information for and against each of the treatment options so that each person can make up your own mind. Including the option that you could do nothing at all but reduce stress and take better care of yourself and go into "natural" remission or just wait for the disease to settle down on its own. I rejoice when I hear someone is doing well for whatever reason. This disease totally sucks and emotions run high when talking about living or dying.

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I achieved remission from systemic scleroderma and chronic lyme with Minocycline only. Symptoms started in 5/09 and rapidly progressed by 9/09 to 50% skin fibrosis, extreme fatigue, joint pain, lung, heart and esophageal involvement. All have normalized now (per follow up lung and heart testing a year after starting antibiotic protocol), with trace of Raynaud's and some stiffness in PIP joints of hands that continues to slowly improve. Remission since 2009. I have been on Doxycycline 200 mg day since 3/10, due to Minocycline toxicity that manifested with some skin pigmentation discoloration. That has resolved with the cessation of Doxycycline.

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Painreliefseeker,

I hope you don't mind my asking, but have you actually been diagnosed with scleoderma? You had a previous post where you were complaining about stabbing pain, but now you talk about your friend having been part of this wonderful treatment and you mention a book that explains it all. Furthermore, you state that your friend is in complete remission and has been following this regimen for two years... And although I'm guessing the cure didn't happen overnight, I imagine you could see your friend's improvement along the way, and yet you have not tried this therapy yourself until now? Please forgive my skepticism but I am always curious when I see posts that strongly endorse specific doctors, lawyers, products and other services -- especially if the person who initiated the post has had no experience with a particular treatment....

I am not challenging the authenticity of your claims as I have had no experience with this particular type of approach to ease scleroderma symptoms, so I wondered what makes you recommend Dr. Brown's work, his book, and Dr Tenthram when it appears you haven't gone through their therapy -- and especially after the study that was mentioned was only performed with 11 patients, which is nowhere close to meeting criteria for an accurate clinical trial.

Having said that, I agree that beauty is in the eye of the beholder and I am by no means putting down any type of treatment - to each their own...

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Thank you everyone for your thoughtful posts. I am seriously considering this treatment due to severe and sudden increase in skin tightening everywhere on my body. My rheumy wants me on Cellcept and won't consider the AP therapy, this is the first time since my initial diagnosis (5 years ago) that I've been very afraid. My skin is rapidly getting tighter but all other tests (PFT, echo, bloodowork, etc...) are the same, the only thing that has changed is I moved 4 months ago to an area with very poor air/water quality (didn't know this before I moved here) and I stopped eatting a probiotic yogurt each morning. I'm escaping the dust bowl in less than a week to a smaller city with good air/ water quality and I'm adding the yogurt back to my diet. I'm thinking of going on the Cellcept after the move for a few weeks to see if it will stop the skin tightening and if that doesn't work maybe trying the AP therapy. The Cellcept is sitting on my counter but I'm afraid to start it now for fear I'll get sick while I'm trying to move. Thanks again and prayers for all.

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Michelle120172

I visited the Green Valley area in Arizona when I was first diagnosed. At that time I was having a little pulmonary hypertension and I had a harder time breathing there. Don't know if it was the dryness or altitude. I don't know anything about cellcept but I think you can take the minocycline with it. I think now other antibiotics are being used to knock out any bacterial infection that may be causing the flares. Since no one knows what causes SD, some could be caused from metals such as lead or mercury. Maybe that is why some don't respond to the AP therapy. Some may have an underlying tiny bacteria that is their cause and that may be why the AP works for them. I don't know. In my case, I was desperate to find help.


I have a friend whose dermatologist put her on 50 mg of minocycline daily for rosacea. He told her not to be concerned about the side effects of it. Some have mentioned getting a green tinge to the skin. I haven't experienced this or anything else, but have read taking vit c takes care of the skin. I still have a tight tingling in my lips. It is gradually going away, but I do notice it.

Good luck in your new home.

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Should have mentioned to check with your dr about the cellcept and minocycline, but I am sure you would do that.

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Becuse at the time .dr. trentham was the CHIEF of RHEUMATOLOGY at beth Israel hospital in boston . Supposed to be the best doctor . My husband kept saying. "if he can'thelp you then there is no one else . he is the best ..WRONG!!! I trusted him . I am an R. N.
cathy from ma

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June..thank you for the thoughtful response. It's strange you should say that about your pulmonary problems when you were here because I was just looking at www.airnow.gov and it's horribly apparent that I moved to a place with the worst air quality in our country. I think I may have 'valley fever", it's a fungus that floats around in the dust here and can cause flu like symptoms, I'm going to get tested for it tomorrow and it's easily treatable so if I do have it I can take Difulcan or some other antifungal. It's one of those things a normal person might fight off without every being symptomatic (sp) but something that can cause problems in a person with lowered immune function. I just hope things get back to normal after I move north. Thanks again.

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Thank you! Every one else acted like it was my imagination.

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Well by this time I hope you have Rheumy you are happy with AND getting good results. I still don't understand why you would stick with a doctor for nine years that did not trust and were disatisfied with. Personally I can see being attracted to a particular doctor due to their reputation initally but don't think I would stay with them if I was having no positive result and concerned about not being given getting the proper tests etc. I understand about wanting to trust a particular doctors views but after watching my parents travel through the medical system I learned the hard way to pay attention not take too much for granted. A reputation only goes so far both for doctors and particular hospitals, results are far more of an indicator of how we the patient are doing, in my view. You stayed in part because of your husbands advice, is he in the medical community too?

As I said I hope you have a docotor you are happy at this point.

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