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Disease is Bad first 3 - 5 Years then Tapers


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#1 Peggy

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Posted 13 June 2008 - 05:44 AM

What happens after a person supposedly has this disease really bad the first 3 or 5 years and then tapers off? Does that mean that it goes into remission for a period of time and then what? I see other people use this 3 or 5 year time period too but I was never told what happens after that? I know that our life span can be shortened depending on what organs are involved and how bad our disease is, but I was curious as to after the 3 or 5 year period how long we have before we get bad again.

Thanks.

Warm hugs,

Peggy

#2 truman

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Posted 13 June 2008 - 08:05 AM

Peggy:

I sure hope that 3-5 year span is true, because going on my second year, I need the rest.

Linda
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It is what it is...........

#3 janey

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Posted 13 June 2008 - 08:58 AM

Peggy,
Due to the unpredictability of this disease, no one can really answer this question. It seems to be different for everyone. I'm no doctor, so I certainly can't say, but even doctors don't know. My rheumatologist told me 5 years ago, that the first 3 years were the worst, but that scleroderma can go into remission at any time and no one knows when. Currently, he considers me "stable". Is that remission? Nothing major has happened during the past year (which is a first) so I'm keeping my fingers crossed.

I just pulled out The Scleroderma Book by Maureen Mayes, M.D. and re-read her chapter "living an Unpredictable Life". I think the title says it all. :blink: Even though she discusses what is "suppose" to happen during the first 3 - 5 years, she sums it up by saying "For the most part, I no longer try to predict a patient's outcome."

I'm closing out on year 5 since diagnosis and I must say that the first 4 years were really, really shaky. There was always something new going on. However, my skin tightening on my hands tighten and then softened during year 1. Go figure. At my last visit with my pulmonoligst, she said "I've beaten the ILD and the PH" based on my tests and how I feel. Everything is stable and she'll see me in 6 months! So at this point, I'm maintaining the attitude that the worst is over and it's all downhill from here. If something does happen 10 years from now, at least I haven't been sitting around waiting for it to happen.

BTW - how are you feeling? I know you finished you last IVIg treatment a couple of weeks ago. Have you gotten your test results? Any good news? I just finished an IVIg treatment this week. It only takes a couple of days for mine to kick in, so I'm looking forward to Sunday. I have a long TO DO list to work on. :)

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 Karenlee

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Posted 16 June 2008 - 03:17 AM

I have a question. When they say the 3-5 year period, that means of skin involvement. What is considered skin involvement? Tightening, thickening, pigment change? Does that include CREST symptoms? Sorry for sounding ignorant but it's confusing. B)

Thanks
Karen

#5 Gidget

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Posted 16 June 2008 - 04:52 AM

Here is my understanding of the disease lifeline for systemic sclero. I can't speak to limited.

Imagine a bell curve. At the disease onset you are at the bottom of the bell curve. As the disease progresses and flares up, you move up the bellcurve. At some point the bell curve peaks and then the disease life line flattens out and becomes straight or the line slightly moves downward from the peak but not by much. Where the disease peaks on the bellcurve is what you are pretty much stuck with. So that is why it is so important to get the most aggressive treatment possible while you are heading up the bell curve. If you can get the bell curve to peak lower rather than higher on the bell curve, then chances are you will be left with better functions ie. lung, gi, etc.. Also, with the aggressive treatment, not only do you hope to have the bell curve peak lower and flatten out but you also hope to have the bell curve peak earlier (closer to the 3 year mark) in order to also be left with more functions ie. lung, gi, etc..

So, I am not sure if I explained it correctly but once the disease life line flattens out then you are considered "stable". I my case, I think I am on or getting to the flattening out stage. So that means, that my lung function is at 65% and will probably stay in that range for the rest of my life. My skin function may improve slightly or it may not. But this is what I mean when I say you are stuck with what you are stuck with at the flattening out stage. I am below the 3 year average at this point. Good Luck Gidget

#6 Peggy

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Posted 16 June 2008 - 06:31 AM

Karen, I'm with you on how confusing this is. Also, when they say remission does that mean permanently or does it happen all over again down the road, that is if we are still here. It's just hard to get a hold on what will happen. I know it depends on the organ involvement but does that stop too when in remission or is that still happening?

With regard to my treatments I can honestly say I have had no improvement. The muscle and joint pain is as bad or even worse than it was before. I don't know if it's from the sclero or if it's the Polymyositis. I have my quarterly appointment next Monday with my both the neurologist and my sclero doctor so needless to say I have a lot of questions.

Warm hugs,

Peggy

#7 Snowbird

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Posted 16 June 2008 - 01:59 PM

I find it all confusing too....is there a difference between the disease being active and being full blown? If this is explainable, then I'm guessing there is a difference from when we start showing symptoms in the beginning to getting loads of symptoms...but what do I know??

Gidget/Janey, with your descriptions, given my thoughts, would that mean the bottom of the bell curve would mean the disease is now active say in the first year and the top of the bell curve would mean it's full blown disease say between years 3-5, and then it would settle down again or am I just out to lunch on all of this? :unsure:
Sending good wishes your way!

#8 Karenlee

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Posted 17 June 2008 - 02:21 AM

Thanks for the explination Gidget. I now understand what you mean about the bell curve and the waxing, waning etc.

I just have to figure out what point I am at in that curve. I don't really know when to say I had skin involvement. When I was 19, is when my doctor said my immune system issues started ie: hair falling out, thyriod shutting down. It was not until about 3-4 (late 30's) years ago that the Raynauds started which is part of the CREST syndrome. About 2 years ago I noticed the tangs. on my face. The actual skin involvement started early this year. And the UCTD I noticed for the first time about 1.5 years ago, but not sure exactly when that started for sure. Sorry for rambling and babbling but it's a tricky puzzle to peice together. B)
Either way, I am hoping that the Plaquenil will stall the disease if I am in the bad stage.

Karen

#9 Gidget

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Posted 17 June 2008 - 05:15 AM

Snowbird,
Your understanding of my bell curve example is correct. The disease is at it's worst at the top of the bell curve I.e somewhere between years 3-5 and at that point it tapers off but you are for the most part left with the limited functions at the time of the peak ie. they don't reverse themselves except for maybe the skin might get somewhat softer. That is my understanding for systemic or diffuse scleroderma. For Limited or Crest, I have no idea what the disease life is.

So basically, For Lungs lets say, as an example -- if You assume your lungs are at 95% at the beginning of the bell curve and at the top of the bell curve, lets say they would be at 45% -- what you want to do is while you are traveling up the bell curve to have some form of treatment to shorten the peak of the bell curve -- maybe take cyclophosphamide or have a stem cell -- or whatever. So in this example, lets say your shorten the bell curve with your lungs at 70% because you were able to halt the disease progression and in essence cause the peak to be at 70% for your lungs instead of the 45% peak had you not had any treatment. Also, in the course of halting the bell curve and peaking with your lungs at 70%, you may very well be in the 36 month time window instead of the 60 month time window when the peak occurs.

So again, I urge everyone to make sure they are getting the best and most appropriate treatment as there is no time to wait and see if something works when you have systemic because again, when the disease peaks, these are the functions you are left with for the most part. I mean, I am not expecting my lungs to get any better after the peak, but at least I can breathe on my own.

I hope my explanation makes sense as it probably works better visually in drawing a bell curve with the flattenting, etc... Regards, Gidget



#10 debonair susie

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Posted 17 June 2008 - 06:36 AM

Hi Peggy and all ladies who posted on this great thread...

Very interesting! I was told what Janey was told.
However, as Janey also stated, each of us deals withdifferent things, making it virtually impossible to "predict" how things will go...w/each and every one of us.
I can't tell you how many times my doctors have "changed" or added diagnoses... IMHO, it's a toss of a coin.

Janey said that her skin started softening after 1 year, whereas my skin didn't begin to soften until 8 years after my initial diagnosis. As a matter of fact, it was only last summer {since the onset of the Scleroderma}, that I've been able to perspire! Now, I do so profusely, which I really don't mind...I just make sure I keep up withthe fluids and Powerade!

Also, I've seen several make reference to a "remission" here, but I've always thought that I was in a flare and then finally stablized... I guess I never viewed it as a remission.

So...there's My 2 cents worth :lol: !lol

Hugs,
Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#11 Snowbird

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Posted 17 June 2008 - 01:48 PM

Hi

Thanks again Gidget, your explanation makes good sense.

I was told that I have Systemic Scleroderma Limited/CREST...so I'm certain it's as you describe....for systemic & diffuse.
Sending good wishes your way!

#12 CraigR

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Posted 21 June 2008 - 11:48 AM

I think we might be somewhat confused about how this (these) disease(s) are characterized.

"CREST" or limited scleroderma is systemic. Non-systemic scleroderma generally limited to a skin condition (say, on the arm) but does not have organ involvment. Perhaps "diffuse" is a better term for the most severe form(?). The diffuse form seems to "rage" when it comes on.

The more people I meet with this disease, the more it seems like everyone has their own version. So it can be quite difficult to categorize, and unpredicatable.

As a CREST (actually CRST) (limited) sufferer, my disease (as well as my father's) was very slow and insidious, starting out with cold hands (as a child I was told that dad had cold hands because he smoked) and a common "heartburn". He was in his fifties before serious pulmonary problems brought a scleroderma diagnosis. I've never had heartburn a day in my life - but my first Raynaud's attack was serious enough to cause ulceration.

My father also had migraines - and I have epilepsy. Probably related to vascular issues due to scleroderma.

In my own mind, I think of "diffuse" as "raging" scleroderma (when it comes on you know you're sick!) and limited (CREST) as "insidious" scleroderma (it may take decades before the symtoms are severe enough for diagnosis).

My 2 cents worth...

Craig

#13 YFChoice

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Posted 21 June 2008 - 02:16 PM

Unfortunately, the bell curve, just like the treatments for SD, does not work for everyone. I have systemic (or whatever it's called....the kind affecting joints and internal organs). When I was first diagnosed, I was given less than a year to live. This was in 1983. The first 3-5 years were rough, being in and out of hospitals and going thru all of the "stuff." Then I had 2 years where everything got better.....skin softened and all of the other problems lessened. From 1990 - 1997, the SD took me on an easy roller coaster ride.....sometimes causing bad problems but most of the time nothing I couldn't handle.

Then, SD took vengeance on me. In 1998, my lungs got worse and I went thru a round of chemo. In 2000, I had a heart attack (SD related). Then I had 2 more rounds of rough chemo due to lung problems. However, like a bad storm, it let up and I've been on the plateau again, enjoying an uneasy truce. Until, last week. My latest PFT test showed some dramatic changes which coincide with how I've been feeling lately. So we'll see what's coming up next. I do think my first 3-5 years weren't as bad as some of the others.

Having said that, I am not one of those who pays much attention to test numbers, blood indicators or the like. If I feel bad, I take care of it. If I don't feel bad or if it's something I've done before, then I don't worry about it. My rheumatologist has commented before, that, according to my test results, I shouldn't be able to snowshoe or ski or hike.

I've had SD for 26 years (I know I had it for a year before being "diagnosed"). My suggestion: Don't worry about how many years of living with SD are good ones or bad ones..........just make sure they're all worthwhile ones.
~ You have to think anyway.....you might as well think big

#14 truman

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Posted 21 June 2008 - 03:03 PM

Thank you Craig for the definitions. As a CREST diagnosis, I can never get the terms or definitions correct. My dad too, had so many of the symptoms and it was said that it was from cigarettes and coffee. When you included the migraines, it has me thinking in that both my sons had (don't know if they still do), severe migraines as children. I guess more and more, it seems there could be a predisposition in families to this disease and that of Scleroderma.
Tru

It is what it is...........

#15 truman

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Posted 21 June 2008 - 03:11 PM

YF:

You are indeed an inspiration! I too agree with your rationale of not reading into numbers and it's how you feel, as well. I treat problems as they arise. I'm going on 17 years of "knowing" and basically was in denial all those years as I felt I needed to push on to raise my sons and provide enough through to their emancipation. I also, though in denial, wanted to make sure I provided for me for when I chose to "acknowledge" this disease and when the official diagnosis came in 2007.

One day at a time.....that's the way I take it, and one symptom at a time. Sometimes the load of so many symptoms at one time can be daunting, and I get up each morning thinking how am I ever going to do this, but you do, day after day, you do.
Tru

It is what it is...........