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#1 summer

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Posted 10 August 2007 - 10:09 PM

I've been wondering once again, how many of you that have been diagnosed with Limited/Crest have Lung issues?. Also, how far along in the disease was it that you first had problems?

Thanking you all in advance
Celia ;)

#2 nan

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Posted 11 August 2007 - 04:05 AM

Celia,
I was diagnosed in 1998 with Sjogren's, GERD, Raynaud's, and Fibromyalgia. In 2004 I have the major GI bleed when it was discovered that I had GAVE( watermelon stomach). I wasn't diagnosed with CREST until Dec. 2006. I have had asthma all of my life, but I don't have any other lung issues at this time. I think that I have had CREST for a bit and it just wasn't diagnosis. Sorry I couldn't help you out with that. I do know that even though we both have the same diagnosis it will definitely affect us in different ways.
Take Care,
Nan

#3 janey

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Posted 11 August 2007 - 05:18 AM

Celia,
In August 2003 I was diagnosed with "generalized scleroderma". I guess my rheumatologist is old school because that term has now been replaced with "systemic". My skin hardening never went past my hands which implies limited, but disappeared about 6 months after starting methotrexate. At this point I don't have any skin involvement; however, in January 2005 the fibrosis affected the conductive tissue in the heart and I suffered from complete heart block. A pacemaker took care of that problem.

In September 2006 I was diagnosed with PAH and mild pulmonary fibrosis. After looking at my tests from January 2006, my new pulmonary doctor said I should have started treatment back then. During the last 6 months of 2005 was when I noticed an increase in SOB and a growing intolerance to exercise.

There are some very interesting studies on SSc lung involvement on the pulmonary page. The first article "The natural course of progressive SSc patients with interstial lung involvement" states the following:

"In SSc patients with interstitial pulmonary involvement, the disease frequently starts with Raynaud's phenomenon and pulmonary symptoms tend to appear at a mean of 7 years after the onset of disease. The first sign of the disease, the probability of interstitial pulmonary involvement, is highest during the first 15 years after."

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#4 VEGAN

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Posted 12 August 2007 - 03:41 AM

I'm 42 now, discovered high ana at age 25, but no significant symptoms. doctor thinks I had mild case since childhood, progression possibly triggered by hormone changes. Last November Raynauds. diagnosis Limited last month. Having echocardiogram 8/31 for SOB.

Peace,
Satya

#5 truman

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Posted 12 August 2007 - 10:23 AM

Are you saying upon hardening of your hands they returned to normal? Are you giving me the hope that there are possibilities of that. My right forearm is stiffened to the point I feel like I could jump out of my skin. Are there chances of reversal? I taking a lot of notes from all poster's generous sharing, and will have enough ideas and knowledge when I sit down with my Doctor again next week. I've have had symptoms for 16 years, but was diagnosed two weeks ago as my skin began tightening beginning in December. Before that I was to an internist, infectious disease, two orthopedics doctors until I found the rheumatologist who immediately identified it and gave me hope that she believes it's been limited to the forearm.

Truman
Tru

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

#6 janey

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Posted 12 August 2007 - 10:58 AM

Truman,
There is always hope! Yes, the skin on my hands and fingers was hard, thick, shiny, itchy and that dark color like a nice tan. My fingers were also curling as a result and I couldn't straighten past a point because the skin was so tight. Now I have very smooth skin and just a slight curl in my fingers. It started reversing once I went on an immunosuppresant (methotrexate).

I'm glad you've been reading and taking notes to get ready for your doctor appointment. We have to be our own advocate in our healthcare because no cares more about you than you. Please let us know how your appointment goes. If you have any pending questions before you go, please ask- start a new thread. We're so glad you have joined us.

Welcome!

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)

#7 Kamlesh

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Posted 12 August 2007 - 11:28 AM

Hi Truman,

About three years ago I had thick/hard skin(severe) on my chest, left arm (severe), right arm (mild), and on chest (severe). After using Penicillamine for 6 months and Cellcept for over two years, my skin is soft. I have slight skin thickening and pain on left arm due to shingles a year earlier.

Yes, my friend there is hope. We can win/control Scleroderma.

Take care.
Kind regards,

Kamlesh


#8 truman

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Posted 12 August 2007 - 11:33 AM

Thanks so much for the hope. It's funny, the past few years people kept commenting about my lovely tan.........rarely in the sun.

If you can think of any questions I should ask, please let me know before doctor's visit. Please remember, I'm gun shy and all alone at this point so I basically probably won't ask what I should; don't want to breakdown in tears and have to walk thru the waiting room. Just finished crying again. I have to get my act together and remember the person I was two weeks ago before the name was put to the condition. I'm a tough lady, just without family support at this moment, it's harder to get it all together.

Thanks so much again...........

Tru
Tru

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

#9 truman

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Posted 12 August 2007 - 11:41 AM

Kamlesh:

I haven't told my doctor but I have a patch on my stomach that is about the size of a coffee saucer and tan in color. Some days it stands out, some days it fades. I have conditions that I never tell the doctor and go to all efforts to hide in order not to face the reality of what I've known all along. Since finding this site, I've not only realized that this is a giving, uplifting, united group of wonderful people...but that there is life with sclero and crest.

Thank you all so much............

I may not have my family's support........but thank goodness I have you all.........(Sorry..many tears coming now for the friends I've found).

Tru
Tru

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

#10 CraigR

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Posted 13 August 2007 - 06:27 AM

First serious Raynauds attack in 1977, at age 22. Looking back, however, I think I probably always had problems possibly related to Limited Scleroderma (my father also had it). I developed epilepsy in 1970 at age 15, which I suspect is related.

Lung problems became apparent in 1996 at the age of 41. At that time I took up rigorous swimming 5 nights a week, and had been working in a job for many years that required walking a few miles a day over hilly terrain. I also get a lot of exercise gardening. I'm always at my ideal weight.

After about 6 months on the swimming program I noticed that I still had to stop to catch my breath, while obviously obese, out of shape people 20 years older than me would swim right past me. I also noticed that when hiking, I would be far more out of breath than others. Also, my father had had serious pulmonary fibrosis.

I went to my primary care physician who did a lung volume test that consisted of blowing into a gun-shaped device. My scores came out very high, sometimes 200% of the expected volume of air. My primary care physician told me that there was no problem, and that I was just "out of shape" (???????????!!!!!!!!!!!!!!!).

So I went to a pulmonologist. The first thing I learned from him was that very high scores on lung volume are a symptom of early pulmonary fibrosis! (especially in individuals who get a lot of exercise.) I had reduced (64%) diffusion, which means that I was not able to take in as much of the oxygen that I breathed. However, this doctor told me that the diffusion problem was not that bad, and, with my high capacity, I should do as well as anyone (WRONG! - tell that to my hiking friends who have to wait for me to catch my breath...). Again, the usual Doctor arrogance when I tried to explain the situation (maybe I needed a psychiatrist to explain to me that I really wasn't out of breath after climbing a flight of stairs, that it was all in my head...).

A few years later, following treatment for Burkitt's Lymphoma that included an autologous stem cell transplant, I developed raging Pulmonary Hypertension. It was originally diagnosed as double lower-lobe pneumonia, and was unresponsive to treatment. It was so bad that the mere act of standing up made me extremely breathless. I was hospitalized at one of the top places in the world for PH. I was tested and had numbers that indicated very serious PH. However, after about 10 days, it went away! I had the "two-week" PH. (though I still have low-grade PH). It confounded the doctors. The said that "I couldn't do that" or "it can't be true". It was hilarious. (what could be more fun than confounding arrogant doctors?)

I take Tracleer (Bosentan) for the fairly mild PH.. A major lesson that I've learned is that the field of medicine isn't much concerned unless your symptoms are very severe. The PH clinic doesn't seem to think I have much of a problem, since I walk the "6 minute walk" (flat) quite quickly - but try walking with me up an incline and a serious problem becomes obvious!


Craig