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Scleroderma & Raynaud's UK (SRUK)

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any researchers here? I might of found something

Runningblind profile image
9 Replies

I’m on another scleroderma forum and my posts either get ignored or they become invisible. I don’t really want to waste more time writing about this until I find out for myself but I’ll try again first.

I can’t find anyone else who is looking into this but I thought I’d ask here.

has anyone researched or looked into caveolin 1?

I feel like actual real treatment options are being suppressed.

caveolin 1 seems to be a protein that controls a lot of things 1 being subcutaneous fat and fibrosis.

Restoring this in animals with a deficiency that had fat loss and induced fibrosis similar to scleroderma treated the fat loss and inhibited fibrosis there’s also a study from 10 years ago that suggested restoration or normalizing caveolin 1 levels could stop lung fibrosis- a main cause of death in this disease.

has anyone looked into this.?

I am personally pursuing my goal to seek a geneticist and acquire this stuff in peptide form and administer it to myself as a way to treat the fat loss, but first I am awaiting a way to test for a deficiency In this first.

This could be the key to stopping fibrosis and bringing back the lost fat as this protein seems to be responsible for the production and regulation

Of subcutaneous fat and fibrosis.

There isn’t a lot of information on this but I wanted to check if anyone has looked into it.

I am going to find this stuff and someone who can guide me through the process of checking and administering it.

Will make another post if I get there.

If anyone has looked into caveolin 1 - scaffolding domain peptide as a way to stop fibrosis or bring back lost subcutaneous fat please message me here or leave a comment.

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Runningblind profile image
Runningblind
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9 Replies
Lucyscure profile image
Lucyscure

Hi Runningblind, unfortunately i have never heard of this particular protien nor of its role on the production and regulation of subcutaneous fat and fibrosis. Although it is a really fascinating hypothesis that the restoration of the caveolin 1 protein would effectively inhibit the fibrosis process that is synonymous with scleroderma. I have only recently been diagnosed with scleroderma and am still learning to navigate my way through all the medical information.

Hopefully some of the more experienced and more scientifically minded members will be able to answer your questions.

Please keep us updated on this pioneering research project, that could effectively prove to be a potential game changer of a incurable disease.

NSV69 profile image
NSV69

This sounds really interesting and hope you get a response

Alice1956 profile image
Alice1956

I have lung fibrosis and loss of body fat. I haven't heard of any research being done into Caveolin 1 protein but would be interested to find out more about it. Where can I see the 10 year old article which you mentioned? Thanks.

pigeonCl-HU profile image
pigeonCl-HU in reply to Alice1956

Alice, here is a google search about Caveolin 1. Plenty of info.

google.com/search?client=fi...

SVBO profile image
SVBO

It is said not approved to use in humans…

Runningblind profile image
Runningblind in reply to SVBO

did you see an article that said that?

From what I can tell there arnt any human studies using this on human tissue except outside of the body.

Cells and genes seem to have the same roles for human and animals so this could potentially have the same effects I’m still looking into potential complications as this can effect a lot of other things however if someone is deficient it could make sense that having a normal level restored wouldn’t cause other issues .

I’m going to look into this a lot more

Runningblind profile image
Runningblind in reply to SVBO

it may not be approved yet but that doesn’t mean it won’t work.

A lot of what we have has, unfortunately been tested on animals first and I havnt seen any information yet that says this has been turned down for human use, only that it hasn’t been.

Certain things have worked in humans that weren’t intended because we have similar interaction with drugs/medications and functions.

one example I can think of was

”finaplix” it was made to increase the muscle mass and weight for cattle to increase profit for sales but bodybuilders started extracting the active ingredient from the pellets and using it as an injectable steroid (trenbolone) before it became available in a vial.

Im not suggesting it’s safe or anything I am looking into a lot of study for what else it can interfere with and all the information I can find on it.

But my main goal is to see if I have a deficiency in it with a test.

If I do It will make sense for what I think and confirm if I’m on the right track.

If I have a deficiency I’m going to try this stuff if I can get it and find out dosages.

If you found somewhere that specifically said that it wasn’t approved for human use id really appreciate a link because so far I can only find animal studies but nothing that mentions humans aside from on tissue outside the body

SVBO profile image
SVBO

I followed the link and saw it in one of the tables. I wish you a good luck in your research! We all hope there will be a cure one day (hopefully very soon)

Verbena_67 profile image
Verbena_67

Thank you for posting what you found. I wish there would be more like you who post potential treatments, even if unconventional. I to an constantly researching. And I agree with you, treatment options are being suppressed.

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