SCLERODERMA

[RSCHAFF]

My only question for everyone is how do we know AP works if it takes so long to see change, which from what I learned with Scleroderma it is normal to get better after about 2 years, unless have Rapid Progression variant?

From my readings it appears to work for most, but was wondering if anyone can comment on this. 

[richie]

Hi–The majority of diffuse scleroderma does not spontaneously subside after two years –this is a huge  fallacy or theory promoted by doctors who just refuse to acknowledge the effectiveness of minocin in treating SD —-A 60 % mortality rate for diffuse scleroderma in 10 years was formerly the grim statistics — puts to bed this two year thing -These figures have changed somewhat due to the wider spread use of minocin for treating SD —-In fact many rheumatologists here on Long Island send their SD patients up to Boston for a first visit and then take over the treatment –I use that  doctor up at Harvard who used to laugh at these claims for spontaneous remission especially after one is taking minocin for a few years !!!!! Spontaneous remission is rubbish !!

richie

[JeffN]

I agree with Richie. When I first was DXd with SD the pouplar wisdom was you had a 40% chance of living ten years with the leading cause of death being kidney failure. When first Dxd I did a lot of reading and Sd did not appear to be similar to a two year long cold that suddenly gets better. I was quite suprised a couple of years in to read the info that after two years SD goes into spontaneous remission. From my time on  various boards I did not see this happening. When I read about this two year to remission issue I posted a question on another board that has several “old hands” that have had SD for many years and are on traditional treatments. I asked about their experience with the course of their SD. What I found out from their responses was that while the progression of their disease did slow down after a time (for some) they still had ongoing issues with progression. While the progression was not is all areas previously affected they still had progression none the less. Some were doing well but all were watching their condition closely as I still do. I don't recall any having said their SD went into remission and their symptoms resolved after two years. Small sample granted but that is what I learned.

This also begs the question “who is going to wait two years with no treatment and hope they go into spontaneous remission”? For me I hurt too much to not be on something and for me the risk/benefit came down to AP. For others the choice will be different – to each their own. I think you would be hard pressed to find very many two years and out SD sufferers. Go to the various forums and ask, I don't think you will find many cases of spontneous remission without treatment or those on traditional treatments.

In addition for a while the net was awash in “Oh you are on AP and are improved it can't be the AP it must be spontaneous remission”  Fortunately it appears that many of us APers are in the spontaneous remission catagory. Kind of an odd correlation that. If any improvement on AP is attributable to spontaneous remission why is improvement on a traditional course of treatment the result of the treatment and not spontaneous remission? 

 

[Zoe]

Take it from me my limited SD has progressed in the 13 years since diagnosed. I am very luck to not have organ involvement but my hands, feet, and joints are effected. I have just learned about AP and started a month ago in hopes of stopping it from progressing to the organs. I wish I had known about AP in the beginning! Best to all, Zoe

[Steve201]

well…not sure this will help….I was dx'd 10 yrs ago last july with Systemic SD….my life expectancy was 6 mos….I've known a few people who also got it…and did not survive….broke my heart cuz I had hope they would make it…problem was they got treatment late into the disease…..

if you get dx'd with this disease….your chances are slim to none without treatment..aggressive treatment…..if someone tells you that it will go away….they are blowing smoke up your skirt…….

all I can say is take this disease seriously……get aggressive…..change your diet…change your way of life…reduce your stress….try different drugs that your body will accept…have a sense of humor…..you can beat it..but it takes teamwork….it takes determination…and it takes faith..faith in your friends..faith in your family….faith in yourself..your doc' and god….

I'm proof it can be done…..it was hard…I thought it would kill me but I wasn't ready to give up…

 

just my two braincells firing off…

 

Steve

 

 

[mschmidt]

Omg, I read this and get the chills.  PLEASE take what everyone has said up to this point to heart.  I, too, was reading and hearing what you are saying.  I held onto that hope briefly because I was in denial that I had SD, despite my very obvious symptoms.  I'm not saying YOU are in denial, I'm telling you that I was at the time. 

Many have said it, and I'm just going to repeat it:  SD can hit like a freight train, and I would much rather have a plan (traditional meds or AP–totally up to you) than not.  It's SO unpredictable–why would you risk letting time pass by to “see what happens?”

I was given a lofty 2 years to live, based on my progression, which was only SKIN progression and joint involvement.  I've mostly reversed my condition in 1 1/2 years treating SD aggressively with Minocin and clindy iv's. (and also treating my Lyme disease).  Thank GOD I decided to do something instead of just waiting to see if “spontaneous remission” was going to happen for me.  I'm not so sure I'd be around had I done nothing.  I just celebrate my 2 year anniversary since being told that I had 2 years to live.  I feel FANTASTIC, and don't have any plans on checking out anytime soon:)

Maria

 

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