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Healing / Reversal

healing reversal

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#1 Susannah

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Posted 10 June 2016 - 10:55 PM

Has anybody experienced complete healing / reversal from scleroderma?

#2 Joelf

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Posted 11 June 2016 - 04:04 AM

Hi Susannah,

How lovely to hear from you again.

Although there are a fair few "cures" abounding for scleroderma on the internet, unfortunately they tend to be quack medicines and therapies. We have a list in our guidelines . At present there is no actual cure for scleroderma, although it does wax and wane and also stabilise in some cases.

However, it may be possible to reverse some of the symptoms; when I was first diagnosed I had inflammation on my lungs, which had it been ignored and not treated, would have developed into fibrosis and probably killed me! Because of the prompt treatment I received with cyclophosphamide, the inflammation was reversed; the key point being that the inflammation was treated very fast in the initial stages, before it had a chance to become fibrosis and therefore irreversible.

We have some medical pages on Scleroderma Clinical Trials, which does show positive and negative results.

Kind regards,

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#3 Amanda Thorpe

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Posted 11 June 2016 - 05:32 AM

Hey Susannah put it this way, I'm in the reversal queue and before you (I'm pushy) so if anyone is getting reversed, it's me!

Seriously, this is possible but it's better explained that scleroderma waxes and wanes. My skin involvement improved but other things have worsened. Wax and wane for sure.

Great question and take care.
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#4 Kathy D

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Posted 12 June 2016 - 10:20 PM

I had what I might call a temporary reversal.  I gave birth to my first child at age 40.  I felt better than I had my entire life including childhood during my pregnancy and for a year after.  I was diagnosed with JRA as a child and it supposedly "mysteriously" went away.  Nope, I just became better at thinking all little girls feel the same as I do, and or masking the joint pain and fatigue as it waxed/waned, I wanted to be what my parents expected me to be....  

 

That pregnancy "remission/reversal" slowly came to an end about a year after I gave birth.  My blood tests for inflammation and a few other blood tests that were usually irregular were in the normal range during and for awhile after pregnancy, very nice!  I am thrilled to have a child we hoped for after 17 years of marriage, but sclero wise I am back in the same boat now as I was pre-pregnancy and a bit worse too.

 

I have found and made contact with distant relatives from the family line my autoimmune gene originated from.  One relative told me her grandmother and mother (born 1900's and 1920's) both were thrilled to be pregnant as much as possible because they felt so much better while pregnant.  I can totally understand that now.  I was too old to conceive again, and not sure my husband could take on another baby as he both works too hard to provide for us and is caregiver to both of us on top of that.  We would have done it if circumstances were different and I could have conceived again.


Diffuse Scleroderma Diagnosed March 2009

#5 Kathy D

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Posted 12 June 2016 - 10:22 PM

[Quote Amanda] Hey Susannah put it this way, I'm in the reversal queue and before you (I'm pushy) so if anyone is getting reversed, it's me!

 

 

:lol: 


Diffuse Scleroderma Diagnosed March 2009

#6 miocean

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Posted 14 June 2016 - 11:16 AM

I think the waxes and wanes part is important to know. 

 

After sudden onset diffuse and scleroderma renal failure I found almost immediate improvement after a kidney transplant.  I felt like I was at a plateau for about 5 years and now everything is back with a vengeance.

 

All I can do is hope that the waning part will come soon because having tight skin again is painful.  My lung function has declined and my oxygen needs increased to where it will be a totally new lifestyle to adapt to.  I didn't think this would happen, specially the skin changing again.

 

miocean


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#7 Shelley Ensz

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Posted 15 June 2016 - 05:43 PM

Amanda, you've totally cracked me up, yet again! :happy:

 

Miocean, I hope you get to another waning then plateau stage again soon!

 

I've experienced the waxing and waning myself, sometimes just through the natural course of the disease itself, and sometimes through various treatments. It's an emotional hurdle to leap across, each time we encounter the waxing bit again. It's such an uncertainty, knowing what it was like when it worsened before, wondering if this is going to be the final downturn, but also knowing that things -- a few symptoms, or all -- could improve at any moment. That's what makes scleroderma such a roller coaster ride, and while not exactly thrilling, it is certainly enough to make us want to scream at times, isn't it?

 

I'm glad we have each other, for comfort when the going gets tough or tougher, and for rejoicing together when things get a bit mild or milder. Fasten your seatbelt, follow expert advice, enjoy life as much as possible plus a bit more than that -- and then hang on for dear life, for scleroderma may be an interesting ride, but very seldom is it a boring or easy one!

 

:hug-group:


Warm Hugs,

Shelley Ensz
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#8 Amanda Thorpe

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Posted 16 June 2016 - 09:16 AM

Ah, yes Shelley, I love the roller coaster comparison and Kathy, what a fascinating family you have!

Hmm...I guess we could also say...put your head between you knees and kiss your butt goodbye! Might be too much though, for any newbies?

Take care, one and all!
Amanda Thorpe
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