Cure for Scleroderma in 2-5 years

[JustDiagnosedChris]

I am in personal contact with Dr. N at Michigan State University. I don’t know if you guys have heard of this. This research is groundbreaking. http://msutoday.msu.edu/news/2014/flipping-the-switch-on-scleroderma/

[richie]

I think that appears very promising research by a prestigious group –however their statement mentioned improvement of quality of life -which is a cautious responsible statement –where did you see “cure in 2–5 years” thats an awful bold statement and I might add in the absence of studies etc irresponsible -if they did say it —
Richie

[richie]

Hi By the way -happened to look up serenagen that you are taking the second ingredient listed is silica –which is a known cause of SD –also vit C in large doses promote the growth of collagen –I would recommend you discuss these supplements you are taking with your doctor —
richie

[greypilgrim256]

I remember reading this earlier this year. There are many new drugs in the pipeline coming for scleroderma. I believe the article your mentioned talks about 2-5 years till clinical trials begin, not a certain cure, but before they start testing the drug in live humans. Sadly, drugs take YEARS to move along the FDA approval process. Orphan disease drugs tend to be pushed faster. Lets hope it moves fast!

[richie]

Hi

I am naturally pessimistic cause over the years I have seen so many of these so-called wonder drugs come and go and after 15 years nothing has even approached minocin as an effective treatment to the over disease–
richie

[JustDiagnosedChris]

Well for people such as myself who might be close to developing DILE, it gives me some kind of hope. I don’t know. Only time can tell.

[richie]

What is DILE –never heard of it –The antibiotic treatment for diffuse scleroderma provides much more than hope –it provides real remission in 80 something % –based on Dr T’s informal findings back in about 2005 —
richie

[mary77]

Richie,
FYI:
DILE is short for Drug Induced Lupus Erythematosus…minocin is known to cause this in some individuals. I have struggled with this myself, as has Maz. The only way to reverse it is to stop the offending medication. It is quite devastating to have this occur when one is initially getting better with minocin, then getting worse BECAUSE of minocin.
Mary

[richie]

Thx -=I understood it is quite rare -it would be upsetting to me if it ocured to me —
richie

[richie]

To Chris -What makes you think that minocycline has caused this problem –whats your ANA ?
richie

[richie]

If you are afraid of this D I L E –talk to DR F about a different antibiotic –
richie

[JustDiagnosedChris]

I have a homogenous pattern ANA and antihistone antibodies.

[JustDiagnosedChris]

Are there any other antibiotics that have ever worked for anyone here with SD?

[richie]

Some people have used azithromycin or erythromycin –results have been mixed –some did well -some didnt on it –
Richie

[Denyse]

@JustDiagnosedChris wrote:

Are there any other antibiotics that have ever worked for anyone here with SD?

Doxycycline can also be used if you think you are developing DILE, this is what is used for Lupus, I had to go on it for about a year till things turned around. Hope this helps

CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIR

[Author]

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