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another newbie

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#1 dustygal


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Posted 08 November 2009 - 07:01 PM


I'm new here and have enjoyed reading several posts tonight.

I was diagnosed with systemic sclerosis in May, 2007. I have completed an 8 month course of cyclophosphamide this year for interstitial lung disease. I've been off work since January of 2008. I also have autoimmune hypothyroidism, scleroderma-related rheumatoid-like arthritis, esophageal dysfunction, and diffuse skin changes. I am Scl-70 positive, ANA positive, and anti-centromere positive (even though I know that Scl-70 and anti-centromere are supposed to be mutually exclusive--I just can't help myself).

I love spending time with my kids, riding my horse, and reading. I used to work out a lot, play tennis, and run or walk several times a week. When I was not longer able to do those activities, I took up horseback riding (I also rode as a kid) which gets me outdoors and exercising. It's great 'cause my horse does most of the work. biggrin.gif That's why I'm...

Dusty Gal! bye.gif

#2 Shelley Ensz

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Posted 09 November 2009 - 06:51 AM

Hi Dustygal,

Welcome to Sclero Forums! I'm sorry you have scleroderma, but glad you found us. Its delightful that you've found some great new hobbies to replace those that are no longer on the menu.

I have a son who has horses, and he dearly loves them, too.
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Jeannie McClelland

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Posted 09 November 2009 - 06:57 AM

Hi Dusty Gal!

I want to welcome you to the Forum too. It's a great place to come to make new friends and get good, reliable information.

I get a chance to do a back-country horseback pack trip about once a year and look forward to it more than I can tell you - but I bet you already know how much that is.

I hope you'll post often and let us get to know you.

Best wishes,
Jeannie McClelland
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#4 Amanda Thorpe

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Posted 09 November 2009 - 07:03 AM

Hello Dusty Gal

Welcome to the forums, you are in the right place for all things scleroderma!

I see you were diagnosed 3 months before I was, 2007 was a big year! I hope the cyclophosphamide did its job well and that the interstitial lung disease is now under control.

Take care and keep posting.

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#5 Joelf


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Posted 09 November 2009 - 09:03 AM

Hi Dustygirl

Welcome to this very friendly & helpful forum.

Like you I also have Interstitial Lung disease and am presently having Cyclophosphamide and I usually ride at least once or twice a week although I no longer have my own horses.

I look forward to hearing more from you. smile.gif

Kind regards,

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#6 Snowbird


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Posted 09 November 2009 - 10:38 AM

Hi Dustygal

Sure sounds like you've found ways to keep yourself busy, that's good!! You've come to the right place if you have any questions...there's always someone here or perhaps I should say "many" here in the know!
Sending good wishes your way!

#7 Sharonvandee


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Posted 09 November 2009 - 10:59 AM

Hey DustyGal

Welcome to the forum, you will find all the people here very supportive and always willing to listen and give good advice.

I am glad you are staying so positive. Horse riding certainly is a great way to rejevenate the soul.
Kindest Regards


Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#8 susieq40


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Posted 09 November 2009 - 02:08 PM

Hey there dusty.  I too have ILD and RA but was just diagnosed this summer.  It was quite the change to go from running around with the kids, to having to be on oxygen and barely able to walk up and down the stairs.  I'm glad you enjoy horseback riding.  I haven't been one to ride, afraid of falling off...lol.  So you just went through cyclophosphamide.  I've only been on it 2 months, going to have the 3rd month on the 16th.  I have a bunch of ?'s for you...don't know if you can answer.  First, How do you feel?  I like the cyclophosphamide, cause it helps with the pain so much.  I haven't lost any hair or anything yet, barely get nauseous, but wondering how it helped you?  Did they see many changes in your lungs?  How far along is the disease in your lungs? What maintenance drug do they have you on?  How does it make you feel?  I'm just wondering, because I want to know what I'm in for. I appreciate you answering if you can.  I know I'm kind of forward with the ?'s. I am also a mom of 5, and you? I live in Montana, and love the Big wide open spaces! I hope to get to know you better!  HUGS!


#9 dustygal


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Posted 10 November 2009 - 10:36 AM

Hey, Susie Q!

Well, we're birds of a feather! I'm lucky, though, not on oxygen. I guess my lung disease is "moderate" with my DLCO in the 60's before I started the cyclophosphamide. I have some nodules and ground-glass reticulation on my lung CT. MY FVC and FEV1 were about 115% of normal when I was diagnosed, but fell 40 percentage points to the mid-80's just before the cyclophosphamide. After cyclophosphamide, my DLCO rose a little but my FVC and FEV1 fell a little. They say I will have to wait another few months to find out if my lung disease actually stabilized. I used "high dose" cyclophosphamide through a study with highest dose of 1850 mg, but my white count fell too much and I ended up at about 1300 mg per infusion, I think.

So, to the rest of your questions. How do I feel? Well, when I was on the cyclophosphamide I loved it and felt better with more energy. I have kind-of dumped a little coming off of it, with more pain and arthritis (they really responded to the cyclophosphamide) and more fatigue again. Also, I am having bladder problems and see the specialist this week. I'm not sure whether they are cyclophosphamide related or not. But, my skin improved quite a bit and so far has stayed better. I am glad I did the cyclophosphamide treatment. I had a total of 8 infusions.

I lost a lot of hair but not all of it. Mild nausea.

I am on a slew of drugs, but none to maintain the "benefit" of the cyclophosphamide because I am in the study. They did not want me to transition to Cell Cept or another immunosuppressant right away. That might (probably will) be different if you are not on a study protocol.

I live in Southern California but love wide-open spaces, too. We just don't have so many of them. VeryHappy.gif Love to ride my horse on the trails and find that so relaxing. There is a gorgeous canyon near my home that I can ride in. I'm jealous of your BIG wide open spaces!

Thanks for your note, and let me know if I did okay answering your questions.


#10 dustygal


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Posted 10 November 2009 - 10:40 AM

Thanks to everyone for welcoming me to the site! It's great to be in a such a supportive place. :thank-you: :thank-you:

I look forward to learning lots from all of you. I am also pretty well educated about this disease and eager to share my hard-won knowledge with others. So please let me know if I can share my experiences with you. But what I don't know much about is computers.

So, how do I add a photo to my newbie name plate?



#11 janey


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Posted 11 November 2009 - 03:18 AM

Dusty Girl,
I'd like to join the others in welcoming you to the Sclero Forums! I love your attitude! Of course I do think you are the first to say that she loved her cyclophosphamide treatments. Sounds like you flew right through them which is awesome! I'm glad to hear that they did stabilize your lungs and caused improvements in other areas.

You asked how to get your picture up. Once you sign in, in the upper right hand corner of the page you should see your name in a dropdown menu. Click on the menu and then My Profile. On that page you'll see (in the upper right section) a button that says "edit my profile". On the next page to the left is a list of things you can do. One is "change my avatar" Click on that and it will take you to a page with instructions on how to upload a picture. Be sure to enter the pixel size next to width and length so that you can maintain proportions. If you have problems, just give another shout.

Have fun riding. It sounds very relaxing.

Janey Willis
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#12 Sweet


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Posted 12 November 2009 - 03:16 PM

Hey Dusty!!

Welcome, welcome, welcome. It's great to have you join us. I look forward to knowing you better.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)