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Scleroderma

Introduction

described at drugs.com with

guide to current approach

Rheumatology definition

Evidence of infectious cause

In the September 2009 edition of the Annals of the New York Academy of the Sciences, a study was published that had evaluated, “… the potential role infections may have on the pathogenesis of systemic scleroderma.” In this study, researchers studied serological samples taken from eighty patients of European origin with the disease (as compared to two-hundred and ninety-six healthy controls) to assess the presence of antibodies for a number of infectious agents, including, “… hepatitis B virus, hepatitis C virus, toxoplasmosis, rubella, CMV, EBV, and Treponema pallidum.” Data collected from the study revealed, “… that antibodies against CMV, HBV, and toxoplasmosis were detected more often in patients with SSc.“ Study authors concluded, “This association implies that infectious agents may have a role in disease pathogenesis and expression.”

Source:

https://www.ncbi.nlm.nih.gov/pubmed/19758208

Management

Hypodermitis sclerodermiformis. Successful treatment with ultrasound. 1)

A Guide to Antibiotic Therapy

Bacterial Infection as the Cause of Scleroderma:

Dr. Cantwell reported finding pleomorphic bacteria in the skin of scleroderma patients over 20 years ago. 2)

Member joanbpass: Scleroderma: Assessing my improvements

Recent research

Assessment and management of patients with juvenile localised scleroderma 3)

Intriguing Relationships Between Cancer and Systemic Sclerosis: Role of the Immune System and Other Contributors. 4)

Autologous Stem-Cell Transplantation for Severe Scleroderma.5)

Position Statement from the American Society for Blood and Marrow Transplantation 6)

Short-term progression of interstitial lung disease in systemic sclerosis predicts long-term survival 7)

There are many factors to be taken under consideration with SSc onset, although a strong correlation has been established for only a few. The most distinct factors are: crystalline silica and organic solvents (such as white spirit, aromatic, aliphatic-chain, chlorinated solvents, ketones, welding fumes). For other factors, which include abstestos, air pollution, other chemicals, silicone breast implants, tobacco smoking, drug reactions, diet influence and exposure to heavy metals, the jury is still out, and their position in SSc onset needs further studies. 8)

Data suggest naltrexone could be helpful in the treatment of pruritus and a variety of inflammatory and acantholytic skin diseases refractory to other treatments. At higher doses, liver function tests should be monitored on a periodic basis.9)

Genetic overlap “we performed a cross-disease meta-analysis of Immunochip data from 37,159 patients diagnosed with a seropositive autoimmune disease (11,489 celiac disease (CeD), 15,523 rheumatoid arthritis (RA), 3477 systemic sclerosis (SSc), and 6670 type 1 diabetes (T1D)) and 22,308 healthy controls of European origin using the R package ASSET.” 10)

To determine whether lung involvement is related to microvascular perturbations, nailfold videocapillaroscopy (NVC) was performed in patients with systemic sclerosis. A good correlation was observed between distinctive quantitative and qualitative NVC features with lung functional parameters such as FVC and DLCO. It is suggested that vasculopathy could play a role 11)

The association between cocaine abuse and systemic sclerosis (SSc) is rarely described. a 27 year-old male patient presented limited SSc with skin ulcers and digital gangrene, rapidly evolving to death due to massive intestinal hemorrhage. 12)

Assessment of associations of nailfold videocapillaroscopy (NVC) scleroderma patterns ('early', 'active' and 'late') with future severe clinical involvement in a systemic sclerosis (SSc) population. 13)

This capillaroscopic score may represent a feasible and simple tool in SSc patients' assessment. The routinely use of this parameter might permit to recognize and to preventively treat SSc patients at high risk to develop digital ulcers. 14)

Interview

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<div class=“patientinterviewbox”> <div class=“patientinterviewimage”></html><html></div> <div class=“patientinterviewtext”> <div class=“patientinterviewname”></html>Alan Cantwell<html></div></html>

scleroderma

Read the interview

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Interviews of patients with other diseases are also available.

Patient

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===== Notes and comments =====

look for content in https://www.marshallprotocol.com/search.php?s=1&q=Scleroderma&forum_id=35

fix** reports Thu Oct 9th, 2014 “Youngest daughter Lyme/Scleroderma/RA (age 18) has been on the MP for 5 years and 6 months. Massive improvement. Very occasional, very low grade IP remains, approx. 90% well”

Dixie posted Tue Jan 24th, 2012 17:44 to baypilot (Jen?) “I had hard white bumps on my right eyelid that is a result of calcification due to scleroderma. Within a few months of starting MP, they disappeared.”

Dixie “I was leaning towards getting mega IV doses of clinda because my scleroderma symptoms are worsening… …I think that I have Sine Scleroderma. “Fri Dec 3rd, 2010 00:46 1 yr anniv.

I am tempted to start a regimen with herbs. I know that they are contraindicated with MP, but I know of someone that is doing both. She has Lymes and Scleroderma and has done quite well on the dual regimen. She gets her herbs from an herbalist/acupuncturist. She has been on MP for 2 years and has been taking herbs during that time too.

I did consult with Dr. Wuhlfman in Vermont. It was a telephone consult and he has some MP experience. He said that the hardening and thickening of the pleural lining of my lungs is from the scleroderma and could take some time to respond to the MP. Wed Jul 13th, 2011 18:28

(SDJoy to Dixie: The fact that you have Scleroderma certainly could explain the increasing issues with your lungs. That is a difficult disease to say the least, and then you apparently have advanced Sarcoidosis on top of that. We do not necessarily get better the first 2-3 years (at least) on the MP. We usually have a lot of IP and feel worse before we begin to feel better. It takes many (but not all) of us some time on the MP before our symptoms get better, and as you know, Scleroderma can do a lot of damage to organs. And as I'm sure you know there are no other good options (steroids, etc.) Hang in there (and follow the guidelines and advice carefully) and in the next couple years you should see some gradual improvements in your symptoms and then eventually larger improvements and real reversal of the disease process. The Dr. in Vermont is correct; it could/will definitely take some time to reverse the scleroderma's effects in your lungs. As far as the MP goes, perseverance is definitely a requirement! )

Yes, I think that I have a double whammy. It's interesting that I was diagnosed with sarcoidosis first and six months into the MP was diagnosed with scleroderma. The physician's know so little about chronic illness and couldn't explain the lining issues with my lungs and a prolapsed urethra, which is all from the scleroderma. It was a disappointment because I first thought that all symptoms were from sarc.

Bobsyouruncle ec 2009 6 months in I noticed this week that the scleroderma on my foot it healing up slowly. However, my skin in generally in poor shape with infected folices on my chest, legs and back often. Small wart-like skin-colored growths continue to appear (they have been for long time, new ones keep arriving).

Elijuh as new member ” Last July after being on Minocin for a year for my Scleroderma, I realized I had Lyme also. ”

Prof M Scleroderma is a Th1 disease. It is suspected to be due to inappropriate activity of the collagen oligomeric matrix protein (COMP) during the formation of the skin. COMP is a protein which relies upon Vitamin D, at least in part, for its stability. You might even see improvement when you cut your daughter's 25-D down to more reasonable levels, but I don't want to raise your hopes too much just yet:) Scleroderma is unlikely to to go away overnight:)

Dr Alan Cantwell spent a lot of his professional life looking at the links between Th1 bacteria and Scleroderma. You will find one of his papers on the subject at https://www.JOIMR.org (search for 'scleroderma' on that page)

Elijuh The vomiting is not something new and I am pretty sure it isn't totally IP. It is partly the gastroparesis from the Scleroderma. It always gets worse in March/April and then again in the fall.

Just to educate about Scleroderma; with SD the body over produces collagen which then deposits in connective tissues. For example, if you have surgery you can expect a keloid type scar. From November of 2004 to November of 2006 I have been in and out of leg casts…mostly in…. from collagen deposits on peroneus longus tendons in both legs. The collagen deposits harden and then cause tendons to tear. In the last two days I have a new collagen deposit forming near an old (24 yrs)snake bite on my lower right leg. Do you think I could arrest this with Benicar? Is it IP? Thanks in advance for any help?

broken link removed Bacterial Infection as the Cause of Scleroderma: A Guide to Antibiotic Therapy by Dr. Alan Cantwell MD, Pat Ganger This easy-read article (with pictures) is intended as an Internet guide

UNABLE TO FIND SO FAR, THEREFORE REMOVED BELOW Bacterial Infection as the Cause of Scleroderma:

by Dr. Alan Cantwell MD, Pat Ganger

This easy-read article (with pictures) is intended as an Internet guide to considering this disease for antibiotic therapy, and a review of supporting literature. Dr Cantwell's illuminating microscopic work and understanding of CWD pathogens occupies the first half of the article. Pat Ganger completes the article as she describes her use of The Road Back therapy in the mid 1980's and how it saved her life (A 1995 Canadian study by Abu-Shakra and Lee showed 61% of systemic scleroderma patients died within 9 years).

Pat Ganger continues to take minocycline today, 23 years later. (MPer's might see this as a complementary, but limited antibiotic therapy by today's MP standards, but also, there was no MP in 1985.)

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===== References =====

1)
Rowe L, Cantwell AJ. Hypodermitis sclerodermiformis. Successful treatment with ultrasound. Arch Dermatol. 1982 May;118(5):312-4. doi: 10.1001/archderm.118.5.312.
[PMID: 7082022] [DOI: 10.1001/archderm.118.5.312]
2)
Cantwell ARJ. Histologic observations of pleomorphic, variably acid-fast bacteria in scleroderma, morphea, and lichen sclerosus et atrophicus. Int J Dermatol. 1984 Jan-Feb;23(1):45-52. doi: 10.1111/j.1365-4362.1984.tb05662.x.
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3)
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4)
Maria ATJ, Partouche L, Goulabchand R, Rivière S, Rozier P, Bourgier C, Le Quellec A, Morel J, Noël D, Guilpain P. Intriguing Relationships Between Cancer and Systemic Sclerosis: Role of the Immune System and Other Contributors. Front Immunol. 2019 Jan 10;9:3112. doi: 10.3389/fimmu.2018.03112. eCollection 2018.
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5)
Sullivan KM, Goldmuntz EA, Keyes-Elstein L, McSweeney PA, Pinckney A, Welch B, Mayes MD, Nash RA, Crofford LJ, Eggleston B, Castina S, Griffith LM, Goldstein JS, Wallace D, Craciunescu O, Khanna D, Folz RJ, Goldin J, St Clair EW, Seibold JR, Phillips K, Mineishi S, Simms RW, Ballen K, Wener MH, Georges GE, Heimfeld S, Hosing C, Forman S, Kafaja S, Silver RM, Griffing L, Storek J, LeClercq S, Brasington R, Csuka ME, Bredeson C, Keever-Taylor C, Domsic RT, Kahaleh MB, Medsger T, Furst DE, SCOT Study Investigators. Myeloablative Autologous Stem-Cell Transplantation for Severe Scleroderma. N Engl J Med. 2018 Jan 4;378(1):35-47. doi: 10.1056/nejmoa1703327.
[PMID: 29298160] [PMCID: 5846574] [DOI: 10.1056/nejmoa1703327]
6)
Sullivan KM, Majhail NS, Bredeson C, Carpenter PA, Chatterjee S, Crofford LJ, Georges GE, Nash RA, Pasquini MC, Sarantopoulos S, Storek J, Savani B, St Clair EW. Systemic Sclerosis as an Indication for Autologous Hematopoietic Cell Transplantation: Position Statement from the American Society for Blood and Marrow Transplantation. Biol Blood Marrow Transplant. 2018 Oct;24(10):1961-1964. doi: 10.1016/j.bbmt.2018.06.025. Epub 2018 Jun 25.
[PMID: 29953945] [PMCID: 6239926] [DOI: 10.1016/j.bbmt.2018.06.025]
7)
Volkmann ER, Tashkin DP, Sim M, Li N, Goldmuntz E, Keyes-Elstein L, Pinckney A, Furst DE, Clements PJ, Khanna D, Steen V, Schraufnagel DE, Arami S, Hsu V, Roth MD, Elashoff RM, Sullivan KM, SLS I and SLS II study groups. Short-term progression of interstitial lung disease in systemic sclerosis predicts long-term survival in two independent clinical trial cohorts. Ann Rheum Dis. 2019 Jan;78(1):122-130. doi: 10.1136/annrheumdis-2018-213708. Epub 2018 Nov 8.
[PMID: 30409830] [PMCID: 6311344] [DOI: 10.1136/annrheumdis-2018-213708]
8)
Walecka I, Roszkiewicz M, Malewska A. Potential occupational and environmental factors in SSc onset. Ann Agric Environ Med. 2018 Dec 19;25(4):596-601. doi: 10.26444/aaem/75894. Epub 2017 Jul 14.
[PMID: 30586984] [DOI: 10.26444/aaem/75894]
9)
Lee B, Elston DM. The uses of naltrexone in dermatologic conditions. J Am Acad Dermatol. 2019 Jun;80(6):1746-1752. doi: 10.1016/j.jaad.2018.12.031. Epub 2018 Dec 21.
[PMID: 30582992] [DOI: 10.1016/j.jaad.2018.12.031]
10)
Márquez A, Kerick M, Zhernakova A, Gutierrez-Achury J, Chen W, Onengut-Gumuscu S, González-Álvaro I, Rodriguez-Rodriguez L, Rios-Fernández R, González-Gay MA, Mayes MD, Raychaudhuri S, Rich SS, Wijmenga C, Martín J, Type 1 Diabetes Genetics Consortium. Meta-analysis of Immunochip data of four autoimmune diseases reveals novel single-disease and cross-phenotype associations. Genome Med. 2018 Dec 20;10(1):97. doi: 10.1186/s13073-018-0604-8.
[PMID: 30572963] [PMCID: 6302306] [DOI: 10.1186/s13073-018-0604-8]
11)
Guillén-Del-Castillo A, Simeón-Aznar CP, Callejas-Moraga EL, Tolosa-Vilella C, Alonso-Vila S, Fonollosa-Pla V, Selva-O'Callaghan A. Quantitative videocapillaroscopy correlates with functional respiratory parameters: a clue for vasculopathy as a pathogenic mechanism for lung injury in systemic sclerosis. Arthritis Res Ther. 2018 Dec 19;20(1):281. doi: 10.1186/s13075-018-1775-9.
[PMID: 30567570] [PMCID: 6299957] [DOI: 10.1186/s13075-018-1775-9]
12)
Andreussi R, Silva LMB, da Silva HC, Luppino-Assad AP, Andrade DCO, Sampaio-Barros PD. Systemic sclerosis induced by the use of cocaine: is there an association?. Rheumatol Int. 2019 Feb;39(2):387-393. doi: 10.1007/s00296-018-4227-6. Epub 2018 Dec 15.
[PMID: 30554308] [DOI: 10.1007/s00296-018-4227-6]
13)
Smith V, Decuman S, Sulli A, Bonroy C, Piettte Y, Deschepper E, de Keyser F, Cutolo M. Do worsening scleroderma capillaroscopic patterns predict future severe organ involvement? a pilot study. Ann Rheum Dis. 2012 Oct;71(10):1636-9. doi: 10.1136/annrheumdis-2011-200780. Epub 2012 Mar 8.
[PMID: 22402146] [DOI: 10.1136/annrheumdis-2011-200780]
14)
Sebastiani M, Manfredi A, Colaci M, Giuggioli D, La Sala R, Elkhaldi N, Antonelli A, Ferri C. [Correlation of a quantitative videocapillaroscopic score with the development of digital skin ulcers in scleroderma patients]. Reumatismo. 2008 Jul-Sep;60(3):199-205. doi: 10.4081/reumatismo.2008.199.
[PMID: 18854881] [DOI: 10.4081/reumatismo.2008.199]
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