More Stuff That Doesn't Work For Scleroderma

I hate scleroderma.  I think I may have mentioned this before.  It seems that nothing seems to work in this condition, not even for the non-life-threatening but life-sucking symptoms like digital ulcers and calcinosis.  In the fall, the ACR had two presentations on the use of imatinab (Gleevec).  One small study suggested some small but encouraging benefit while the second study was extremely small because the investigators called the whole thing off.  I decided to remain optimistic against all hope, but that all changed when I met one of the investigators from the second group at a recent conference.  She was not at all wishy-washy, telling me that these patients did not tolerate the drug at all, even at sub-targeted doses.  Forget it.  Move along.  

Well I have, and I've even found the next drug that probably won't work for scleroderma.  Perfenidone, a novel, not-sure-how-it-works anti-fibrotic drug has just received a rather non-ringing endorsement from the FDA advisory committee for the treatment of idiopathic pulmonary fibrosis.  In Vivo has an article on how one of the FDA referees voted no regarding safety and no regarding effectiveness but then voted yes for approval.  The logic, which sounds familiar to any scleroderma patient or treating physician, was that even if it didn't impress him, there really isn't anything better out there.  So I'm sure there are scleroderma trials underway trying to break the long streak of failures on record.  We can only wish them luck.  Lots of it.

Comments

[Margaret]

I have scleroderma. I can't say I hate it, because it has taught me so much.

The first thing it taught me was that my neurologist, the one who did the ANA sck-70, but didn't think it important, probably didn't realize the seriousness of the positive lab.

The second thing it taught me was that not all rheumatologists see enough scleroderma patients to really be helpful, and I can thank the first rheumatologist I saw for telling me that he was not one who had, and that I really should find one who did see lots of scleroderma patients.

The third thing I learned was that when seeking advise from your medical doctor relatives look at everything they say, not just the advise they give you. My niece's rheumatologist buddy at Stanford sent me a list of Bay Area rheumatologists who see lots of scleroderma patients, but it was her advise 'no ap' that ultimately lead me to the scleroderma patients who are getting well.

I've learned that rheumatologists are not taught that scleroderma is a bacterial infections, so most won't even consider the possibility.

I've learned that not only did my scleroderma reverse with antibiotics, so did other neurological symptoms.

I've learned that getting tested for lyme is a critical piece of the scleroderma puzzle.

I've been on antibiotics for nine months, and I don't have a single physical symptom of scleroderma left. I have my life back, my husband has his wife back, my sons have their mom back.

The treatment of scleroderma patients with antibiotics is not a failure, it is a success.

I invite you to talk to us, 'the ones who are getting well, we'd love to show you our labs, our skin, and our progress. We are well educated, professional women, not ignorant bumpkins. Come and see.

Margaret
916-532-2484

[Cheryl Ferguson]

I too do not hate scleroderma. Only four years ago I was told that it would likely take my daughter's life within a few short years. She was 16, the symptoms were progressing rapidly and included lung involvment and digital ulcers on her finger tips that had "eaten" into the bone. Hyperbaric wound care was being scheduled and amputation was being considered.

I did my homework and found options that were not being offered by the rheumatologist that diagnosed her. We flew to Boston to see a doctor who had successfully treated systemic scleroderma. She began the treatment and GOT BETTER. Here is a link to an article that ran in the Scleroderma Foundation Magazine, "Scleroderma Voice." http://www.scleroderma.org/pdf/News/2009/swimming9-09.pdf
It pretty much tells the story. She is now finishing her Junior year of college and she has two NCAA Championship appearances, one NCAA National Title (1st place) and a school record. How's that for a kid with documented lung involvement due to scleroderma less than four years ago.

Scleroderma, if treated correctly and early, is nothing to hate.

Cheryl

[Kim]

Count me in as another Scleroderma SURVIVOR thanks to the Antibiotic Protocol. When I was diagnosed five years ago I went through the shock of being told I had a fatal disease with no known cure. Thank God for the internet because it allowed me to find the treatment that literally saved my life, funny how it wasn't offered as one of my treatment options by my rheumatologist. When I approached him about using antibiotics he flatly refused telling me they didn't work, and also telling me there was really nothing else that did! I found a doctor that would help and today am in remission.

At some point mainstream rheumatology has got to suck it up and start listening to the patients who are getting better from this dreadful disease. Doctors have got to quit being seduced by drug companies with the latest and greatest......blah, blah, blah. If the best treatment is an old, out-of-patent antibiotic like Minocin, then for the patient's sake.......USE IT.

[Maria]

I don't hate Scleroderma anymore, either. After being mis-diagnosed and flat out ignored by 18 "specialists" for 15 months, I came up with my own diagnosis, and found AP. I was told by 3 hematologists, 2 oncologists, 2 neurologists, 2 vascular specialists, a cardiologist, etc...that "you definitively don't have Scleroderma", and they laughed at me when I mentioned Lyme Disease. I have BOTH. The rheumatologist who finally listened and saw my skin diagnosed me (hesitantly) with diffuse scleroderma, and said that based on my progression, I had about 2 years to live. She'd seen 2 other cases in 25 years, and recommended I go to a "top scleroderma research doctor" in the area. Very prestigious institution, and I was offered standard and extremely toxic drugs. AP was the ONLY thing that made sense, and I'm grateful that I never ventured down the traditional path offered to me. I will never understand why this isn't an option offered to us, and at the same time realize that Scleroderma is an "orphan disease" and there isn't any money in actually finding the CAUSE of what makes us sick. So, we become guinea pigs in clinical studies. Welcome to modern medicine!! If more doctors opened their minds to the infectious theory of disease (which makes PERFECT sense) instead of relying on what they were taught in medical school as being the holy grail, perhaps we'd find cures to all sorts of diseases. How is it that laypeople like us can figure it out, and you can't?? WAKE UP, please!! I'm 90% recovered after only a year on antibiotics for Scleroderma and Lyme. Is it "spontaneous remission" or a vaild treatment? At this point, who cares, I have my life back, thank you very much.

[Marion]

Minocycline is a highly effective treatment for scleroderma. You might like to connect with Dr. David Trentham in Boston who conducted the Minocycline in Early Diffuse Scleroderma trials. He treats countless scleroderma patients successfully with this simple antibiotic prescribed to teens longterm for acne every day. Dubbed, "The Harvard Protocol," patients simply take 100mg BID. Would also recommend the book by Henry Scammell, "Scleroderma - The Proven Therapy That Can Save Your Life."

Minocycline in Early Diffuse Scleroderma SSc - The Next Step - The Minocycline in Early Diffuse Scleroderma Study published in the November 28, 1998, issue of The Lancet validated minocycline as an effective treatment for scleroderma.

http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/68.html

http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/67.html

http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/113.html

Infection with Bacteria as The Cause of Scleroderma

by Alan Cantwell, Jr., M.D. © 2000 (see studies at foot of article)

http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/102.html

Acute exacerbation of systemic scleroderma in Borrelia burgdorferi infection

http://www.ingentaconnect.com/content/bsc/jdv/2005/00000019/00000001/art00015?crawler=true

Journal Articles Pertinent to Using Antibiotics for Rheumatic Disease

Scleroderma

http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/76.html

http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/419.html

Scleroderma

Minocycline in Early Diffuse Scleroderma, Christine Le, Alejandro Morales, David E. Trentham, Lancet, 1998; 352:9142, 1755-1756.

Outcome Measurement in Scleroderma Clinical Trials, JE Pope, N Bellamy, Sem in Arth & Rheum, 1993; 23:1, 22-23.

Photopheresis for Scleroderma? No! JF Fries, JR Seibold, TA Medsger, Jr, J Rheum, 1992; 19:7, 1011-1013.

Histologic Forms Resembling "Large Bodies" in Scleroderma and Pseudoscleroderma, AR Cantwell, Jr., Am J Derm, 1980, 2:3, 273-276.

Acid-Fast Bacteria in Scleroderma and Morphea, AR Cantwell, Jr., DW Kelso, Arch of Derm, 1971, 104:7, 21-25.

Acid-Fast Bacteria as a Possible Cause of Scleroderma, AR Cantwell, Jr. E Craggs, JW Wilson, F Swatek, Dermatologica, 1968; 136, 141-150.

Etiology of Scleroderma: A Preliminary Clinical Report, V Wuerthele-Caspe, E Brodkin, C Mermod, J Med Soc NY, 1947, 42:52, 256-259.]

Tetracyclines: nonantibiotic properties and their clinical implications.. Sapadin AN, Fleischmajer R., Am Acad Dermatol. 2006 Feb;54(2):258-65.The therapeutic effects of tetracycline and its analogues in various diseases have also been investigated. These include autoimmune disorders such as rheumatoid arthritis and scleroderma. Department of Dermatology, Mount Sinai School of Medicine, New York.

The Multiple Properties of Tetracyclines

http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/110.html

Although the following was presented to the American College of Rheumatology this past fall in relation to RA, there is some in-depth description of the many immune-modulating properties of tetracyclines:

http://acr.confex.com/acr/2009/webprogram/Paper10631.html

Adwan’s presentation stated that, “Animal and in vitro studies have shown them to modify the inflammatory process in various ways unrelated to their antimicrobial activities. These include effects on matrix metalloproteinases, Nitric oxide, phospholipase A2, inflammatory cytokines, immunomodulatory and anti-oxidant effect, as well as effects on angiogenesis, apoptosis, MAP kinases, TGF beta and poly (ADP-ribose) polymerase-1."

[Michelle]

Another AP Success story in the making...My mother is 66 years young. She has been failed by the medical and pharmaceutical community for many, many years. 20+ years ago she was told she had an autoimmune "problem" – Her many doctors through the years weren't really sure what it was but, she was finally diagnosed with "Inflammatory Arthritis." Lupus was tossed around, Sjorgen’s Syndrome and a myriad of other AI diseases. Her last Rheumatologist was pretty worthless as a doctor; he blew her off time and time again, loaded her with NSAIDS, Steriods and Methotrexate. The most recent time he blew her off was when she asked him to test her for scleroderma 2 yrs ago. Two totally random medical professionals asked her if she had this disease. It was obvious to them by her appearance and her decreased ability to open her mouth. Her Rheumie looked at her, laughed and said "you don't have scleroderma!" Now, fast forward 2 years to today...after her kidneys failed last year due to scleroderma renal failure, after a diagnosis of moderate PAH, Raynauds Syndrome, horrible arthritis (one shoulder replaced and one knee and the others need replacing too), skin pigment changes, slight hardening of arms, chest and face, slight finger and mouth contractures, gut issues, eye issues…I could go on and on. BUT today we are beating Scleroderma with Antibiotics only because I “happened” to find a book on Amazon by Henry Scamell called Scleroderma - The Proven Therapy That Can Save Your Life. Praise be to GOD I found that book. My mom has been on Minocycline for almost a year now. She also pulses Zithromax on Thursdays only. She is doing so much better! Each day she improves. She has not used her oxygen in 5 months, her skin is soft, she has energy, she smiles, sings and has a better outlook on life. Antibiotic Therapy should be an available treatment for Scleroderma and other Rheumatoid diseases. It should not be hidden. It is the only thing that makes any sense. I recently lost a friend to Scleroderma. It was too late for her to gain any improvement other than skin softening by the time she started her therapy. She was too far advanced in her disease. She was 36 years old and died of cardiac arrest a few weeks ago. She too was failed by the medical community. I believe that if at the time of diagnosis (5 yrs ago) she was given AP, she would still be here and her two small children would still have a mommy. AP has been around a very long time. It’s a sin that it is not given more credence.

[Minnie Washington]

I see the antibiotic people are having a field day here....

Minnie

[R. H. Stone]

AS one who has experienced complete remission from diffuse scleroderma by going to Dr David Trentham of Harvards Beth Israel Deaconess Hospital and being treated with minocycline -I wonder what the comment "having a field day" means --does the person mean that all these mentions of remissions are less than true ??? If that is the case then that person is just destined to continue suffering -=--

[Connie]

All of the other posters have commented so eloquently, I dont know that there is anything else I could possibly add, except for this: I am also on antibiotic therapy for my limited Scleroderma / CREST and I am seeing success with it. I will continue with the Minocin therapy, and I expect nothing less than a full, complete and PERMANENT recovery from Scleroderma. it is OK to hate Scleroderma.. I think most people do... its just a matter of using AP to treat it. www.rbfbb.org.

[Trudi]

I think Minnie's comment is meant to be condescending. How sad to display such an attitude towards those who only want to get the word out about a successful treatment for this horrific disease.

[Sue]

My son who is only 15 was also diagnosed with scleroderma last year. He too is on the antibiotic protocol. His skin patches are gone, his hair has grown back and his skin is soft again. As a Mom, I can not comprehend how a Dr. who has sworn to heal ignores this simple protocol. Why do Dr's. want us to hurt our babies with these toxic drugs like methotrexate. Is money from the pharmeceutical companies that important to them. If it were their child what would they do? Wouldn't they want to feel safe and secure in the knowledge that the Dr. did not care about big pharma and wanted only the best for the child? Please, help us get the word out that this works so that we don't have to lose any of our loved ones because they don't know about the treatment or because they still "believe" that the Dr. knows best.

[Wayne Tognolini]

After a bad start to treatment for systemic Scleroderma last year, and after being told the devistating news that there is no successful treatment or cure available for this disease, my wife found that there are people treating SD in a different way using antibiotics. We read there stories and wondered if this was too good to be true. I took the plunge and embraced this way of thinking about SD and started AP (antibiotic protocol). Now after 7 months of AP, my SD is slowing, some symptoms are begining to ease off and there is definately going to be life after a diagnosis of aggressive Diffused Scleroderma. Last week I had a CT lung scan and there has been no interval change over the last 6 months. My lungs remain clear and that is just plain awesome news. Getting better doesn't happen overnight, but it sure does happen using AP. I feel that Rheumatologist's all over the world will one day recognise the benifits of AP, and the the fact that they can save there patients lives by using it.

[Alice]

I too can function because of AP and am on the road to recovery from CREST/limited scleroderma. Just ask my mom, father and kids what it is like to see the old me back. They will certainly tell you there is something to AP and I thank God he directed me to this life saving information. I just don't get the disdain towards people getting better? I guess those folks who want to stick with Western medicine like supporting big drug companies. No thanks.

[Yvonne Savoy]

I am another AP success story. As an RN, I decided to research my options for my aggressive case of systemic scleroderma. I declined the immunosuppressant therapy, as I did not believe it would eradicate the problem and because of the potentially negative long-term side effects. I have been on AP for 6 months and no longer feel ill, I do not feel like I have scleroderma anymore. I know beyond a shadow of a doubt that AP works. Ask my family practitioner who had not seen me since I started AP--he was astounded and will now offer AP to others. I am also speaking to other physicians I know through the business I own, hoping they will offer this treatment to others. I try to get the word out to others who are suffering needlessly, because the established medical community does not recognize AP as traditional therapy. AP is a safe and effective treatment for scleroderma and other autoimmune disorders.

[Karen Snyder]

Minnie's comment is accurate. There was a thread on the AP website encouraging their members to post here.

The OP is clearly frustrated by the lack of a proven breakthrough. A handful of AP success stories is nice to hear, but not exactly a breakthrough. We want our doctors to hate scleroderma because they will keep trying to cure it!

[Karen Snyder]

Also, to Alice (above), how exactly is an antibiotic NOT Western medicine? It is still a drug. Manufactured by (horrors!) a pharmaceutical company.

I love that the APers try to align with the holistic movement when antibiotics are among the most commonly-prescribed drugs ever!

[3+speckled]

I'll be honest, I have never heard of the Road Back foundation. I'm intrigued by all the testimonials and have looked into the minocycline story a little closer. I have posted a summary of my little investigation today.

I appreciate the information some have provided but am alarmed at the simplistic doctor-bashing opinion of others. (No Sue, we are not pharma-loving baby hurters.)

Feel free to continue the discussion. I'll be reading.

[Yvonne]

3+specklede----Please do continue reading--we need someone to listen and maybe you are the someone who will make a difference for others. Just prior to starting AP, I had an appointment with a rheumatologist at a highly regarded scleroderma center. After being examined I was offered cellcept, which I declined and indicated I had opted for AP. The rheumatologist immediately offered to prescribe minocycline. I again declined, as I had already scheduled an appointment with an AP physician for the following week and I wanted the IV Clindamycin initially that was offered as part of his protocol. Just found that very interesting. After my success with AP was obvious, I communicated with her by email on several occasions and expressed the frustration so many of us experience as we navigate the roadblocks of the medical establishment to find a safe, effective and simple answer to the treatment of this devastating disease. The rheumatologist responded that maybe more clinical trials need to be done. I even suggested maybe she could be the one to facilitate that...never heard another word from her. Something else you might find interesting. She had suggested at my appointment that I should see her colleague for consideration of a stem cell transplant. I am so far from anything resembling that drastic of a measure now, it just seems unbelievable. Also, just curious if you have any information regarding the long-term success rates and development of negative side effects with immunosuppresant therapy for scleroderma?

[Jack]

Okay, I will wiegh in here as well. My wife has a similar story. After finally being dx'd with a agressive form of systemic diffuse scleroderma she was offered cancer drugs and immunosupressants(cellcept, mtx, enbrel, prednisone). We did our research and found out about AP through the roadback foundation. My wife is doing amazingly well. She ran a 1/2 marathon in September and is off of all of her blood pressure and pain drugs. The only thing she currently takes is minocin and she is functioning very well. This stuff clearly works. For anyone to be offered anything else as a first line treatment is downright criminal in my eyes.

[Alice]

Linda, you are right, my apollogies for the stupidity in my comment re: Western medicine and the impression it gave that I bash doctors. This is as you so wrote, not the whole story because I do take prescribed medication (minocycline as well as low dose naltrexone). I obtained these prescriptions from my wonderful internist and a rheumatologist both of whom I might add are very open to other options, as well as open to more holistic ways of treating the body. I am extremely grateful for these professionals. They took the stance that it can't hurt, so let's see if it helps. I regret to say though that I have a bit of a bad taste in my mouth for those MDs who don't open their minds, listen to their patients and dig a little deeper. I have lost my sister, my best, friend and the mother of two beautiful boys because she was incorrectly diagnosed (she had lupus but was diagnosed with just depression). She was shuffled from doctor to doctor, hospital to hospital and was prescribed many, many pharmaceuticals that, in my mind, killed her. If someone had listened to her like my doctors have me (I asked for the ANA test knowing something wasn't right and my doctor LISTENED), she just may be posting her success story on this blog too. All I am saying is there just may be more out there then what is being offered that may be the ticket to feeling well again. There certainly was for me. Why not you?

[caroline jeavons]

my siter was diagnosed in june with diffuse scleroderma. she has just been given immunosuppressants and has been taking them for 1 week
we have found the road back foundation and have read the book we strongly believe in dr browns theory and she wants to get on minocyclene asap. we are worried at the possible effects the immmunosupressents will have on the ability of the antibiotic to fight off the bacteria. has any one taken these strong drugs(Methotrexate) (i think! )along side minocyn and what was your sucess. she is scared to up the dose and regrets being talked into taking them incase they compromise her hopefull recovery from minocyclene. please help if you have been in a similar sitution she has been ill since about january 2010 and has had fast progression since then until today having skin thickening on arms ,chest, hands, face, feet, ankles,neck, but as yet no internal organ involvement. thankyou

[Celia]

Hi, i was diagnosed with limited/Crest scleroderma in 2007. I have no skin issues yet, but scleroderma has destroyed my digestion system, specifically the bowels, I also have decreased lung capacity. I am looking at having an ileostomy this year. Firstly I would like to know if taking in Minocycline can reverse the damage to my digestive system.
I did begin to take minocycline in 2008 with IV clindamycin, and had a severe reaction, stomach bloated and red like I was 9 months pregnant, hives, severe reflux that wouldnt subside, you name it I had it, also mild halluncinations. I was seeing a doctor, who believed in Dr browns theory, but charged like $100 for one hour. I decided that I would stop AP, due t the fact on how sick I became, and having a toddler to look after. I am in two minds whether to go back on it. when I was sick, like I mentioned, i ended up in emergency, and they gave me a short dose of Prednisolone, which decreased the symptoms.
Your advice is much appreciated.

[Carole]

My sister is in the hospital on a ventilator I am so scared. I don't know what to do. She has Scleroderma. They can't get her to digest anything through a feeding tube it just sits in her stomach and then she throws it up and they can't get it in the small bowel. She has kidney failure. Also her white blood count is low. Please help me help my sister to recover and not die.

[charlene]

if anyone who has had success with AP treatment that is willing to email me to so i can ask some questions i would really appreciate it. My husband is suffering really bad with diffuse scleroderma and has just started IV antibiotics - it would be lovely to have someone to talk to for some reassurance. please emai: [email protected]

[Christine]

I have scleroderma (rheumatologist used to call it "undifferentiated connective tissue disease" because she didn't want me to have a label... Why?) But I have not been told if it is "diffuse" or anything else. Recently my doc prescribed the antibiotic erythromycin because of my many emerging sites with calcinosis and infection (hands and feet), as well as with ongoing esophagus and colon problems. Is use of erythromycin the same as the minocycline therapy? When on minocycline, is this a 24/7 for rest of your life therapy (i.e., controls the symptoms) or does it cure the disease (i.e., does it target the cause)?

[Ekin]

Hi everyone, My mom died due to scleroderma (lung fibrosis) 25 days ago...She was on Celcept and Prednisone , and 4 months ago a tumor was found on the left part of lung. They try to investigate if it is benign or malign..They did nothing, even could not decide if it benign or not..She had hemoptysis and breathing became harder and harder. She died in intensive care unit, because of poor diagnosis, poor treatment etc...God bless you!!

[Acne Treatment]

What is it to say, all diseases are bad. I just wish scleroderma was like acne and could vanish after an appropriate good treatment.