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Hi, Bunny, let me add my welcome, too. The ISN Sclero Forums are a great place for information and support. Sounds like from reading your other posts, you have a lot to offer as well. I look forward to getting to know you better.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi. I'm very new to this and I hope I'm doing the posts and replies right.

I'm 48 and have just recently been diagnosed 2 months ago after a year of doctoring. Now that I have the diagnosis that I was so hoping for now the real batle begins. And I mean battle.

I have been started on cyclophosphamide to battle a protein marker that apparently really heightens the possiblity of my getting lymphoma with my having sjogren's and with the sclero. So I don't just get to battle sclero, I have to also battle sjogren's and raynauds/ battle this protein lymphoma marker and all of the symptoms and side effects from the disease and the cyclophosphamide that I'm taking.

Quesiton - I was told the biggest battle is to hold off the sclero getting into my lungs as once it's there there's not much they can do? Is that what others have heard also? I have some lung involvement, but not much and will be tested again in April. I was just wondering what others have heard.

If you know, please feel free to send me a personal email as I haven't gotten this website down pat to know where to find everyone's replies and advice.

Thanks for listening.

Peggy

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Peggy,

I'm sorry to read about your diagnosis and all the battles you are fighting. You do however, sound very strong and able to fight back.

I've noticed that you are doing very well in posting and replying, so I'll just address your question about lung involvement. First of all, the cyclophosphamide will probably help to postpone, possibly indefinitely additional lung involvement - but then we never really know. It is used to treat patients once it's developed, so it makes sense, that it could also prolong it. If you lung involvement is pulmonary fibrosis, it is usually not reversible because that is a scarring of internal lung tissue that allows the transfer of oxygen. The trick with fibrosis is to catch it early and prevent it from getting worse. Pulmonary hypertension can be reduced in some patients with some of these medications. I'm on Tracleer (Bosentan) and my PA pressure has dropped from 45 to 30. (I also have a mild fibrosis, but enough for me to require supplemental oxygen when I exercise, run errands and sleep).

We have a couple of links on cyclophosphamide - general information and studies.  I hope this information helps.

Welcome to the ISN family!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi,

My name is Deb. I was diagnosed spring of 2006. It was really long and drawn out. I has Raynaud's for years. And my doctor said yea that what you have. Then I was getting digital sores on my finger tips every winter which I thought it was the Raynaud's with the hand soap we used at work. So started going to a dermatologist. March 30 2006 I stopped smoking (HURRAY) But three weeks later I was admitted to the hospital with chest pressure. I had sick-sinus syndrome which made my heart rate go below 30 when sleeping. So a the age of 50 I got a pacemaker. When I went back to the dermatologist he put two and two together and sent me to the rheumatologist. After the test I was diagnosed with CREST syndrome. I have the Raynaud's, GERD, hardening of the skin, something with rounding, and tightening of the fingertips. I also have arthritis. Sometimes it becomes to be too much. And I don't think people understand. I work and can take care of myself, thankfully. Has anyone been put on Methotraxate for it?

I will be nice to talk with people who understand. Thanks for this site. rolleyes.gif

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Hello Everyone,

 

 

I kinda skipped ahead of the introductions and posted a few times. A little about my sweetie. She was diagnosed with SS in 1989. She has been through most of the usual symptoms. Symmetric thickening of skin, Finger ulcers, Raynaud's, Bowels and constipation to name a few. Her fingers have curled in ,and she has limited use, She had a stroke from bleeding in the left side of the brain that required Neurosurgery. She is now is fighting depression. She has been on various cocktails of medication for the last few years and seems to be getting a little better.

 

On Nov 26th we are scheduled to see doctor Furst @ UCLA . He has truly changed our lives. We audio tape our visits to make sure his instructions are followed by our local Doctors.

 

Best Wishes

 

Bahaboyga

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Hi, my name is Kim, I'm 45 and was diagnosed with CREST about 7 years ago. Each year things have gotten a little worse but nothing serious yet.

 

My thyroid stopped working after the birth of my son, almost 15 years ago. Then my fingers would turn white and get little sores on them. Restless legs took me to the doctor who sent me to a rheumatologist. My ANA and symptoms pointed to CREST. I have no skin involvement which makes it hard to get doctors to understand you feel horrible. I have a lot of muscle pain, especially in my hips.

 

I've had motility issues in my esophagus for years but have had extreme bloating, belching and gas issues for the past 2 years. It really limits the foods I can eat.

 

Having a silent disease is a problem because no one thinks you look sick. I have pain, fatigue, stomach issues, insomnia, restless legs, Raynaud's, etc. No one wants to hear you complain and look at you and assume you're either a whiner or it's all in your head. My rheumatologist retired and finding doctor who knows about CREST and it's complications and who is willing to take pain patients in this town is impossible.

 

Life is good, though. I have a wonderful husband of 23 years. A strong-willed but good son of 14 and 2 adorable whippets, who adore me and who love to snuggle and sleep. Thanks for being here.

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Hi, I'm new to this message board. I am a member of the PH message board and the squamus cell carcinoma message board and now I've found you. I was diagnosed with scleroderma and PH about the same time in 2006 when my right heart failed. We were doing a PET scan to see how bad the scarring was in my lungs when we found the cancer. So now I'm dealing with all three terminal diseases and just need some support some days. Thanks for being here.

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Hi Patti,

 

Welcome to the Sclero Forums. I'm really glad you found us, but sorry it's due to your multiple diagnoses. You have come to the right place for support! You will find a wealth of information here, in addition to some great friends.

 

Again, welcome.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Everyone. My name is Constance (Connie) and I am just now going through diagnosis. I am 53 years old and I already know I have Pulmonary Hypertension. My treadmill test showed a BP of 209/60 when I finshed it. I have Shortness of Breath with most any exertion. I have one hand that has a couple of trigger fingers to it and a couple of deformed knuckles now. My hand feels tight and swollen a lot. I have been diagnosed last year with Hashimotos Disease. This is all so upsetting for me. I am afraid by most everything I read. I am seeing a pulmonologist Thurs.. He probably will order some kind of a CT scan to look at my lungs. Yestrerday I had an eco of my heart and haven't heard the results. My guess is that I have systemic scleroderma. I feel like I really need a support group around this. I live in Santa Rosa, California. Well, thanks for letting me air my fears at what is only now unfolding for me. I just wish there was a simple blood test to tell me what I have, NOW.... I so appreciate any thoughts and comments and just the fellowship will help. I had never even heard of any of this before so I am kinda shocky about it all..... :(

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Hi Connie!

 

Welcome to the Sclero Forums. So glad you are here. I'm sorry to hear about the symptoms you are having, and your impending diagnosis.

 

You've come to the right place for support, and best of all it's from people that suffer from the same illness, so we can truly relate!

 

Look forward to knowing you better.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi, Patti. Just wanted to welcome to the forum and look forward to hearing more from you on the boards. Finding out about the cancer must have been a real shocker for you. Pulmonary Hypertension is often a complication of scleroderma. I know it's hard not too, but try not to think of these diagnoses as terminal diseases. Think of them as challenges which you can beat with the help of a good medical team, a positive attitude, an open mind and a good support structure. Keep us posted on your progress.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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