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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Clementine

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Posted 25 September 2007 - 07:19 AM

I just had my rheumatologist appt. Mine DLCO went to 51% and my TVC was 61%. The DLCO went down some and the TVC went up some...so the dr. says I am stable.
My Raynauds is really irritating but no ulcers so not complaining too much. I can see the heating pad will be my bestfriend starting now. I put my hands and feet on it to warm up. Yesterday it took over an hour to recover from being out of the house. My CT scan showed a slightly enlarged liver and discoloration but the dr was not concerned because my labs a week ago were fine. I hope he's right.
Just for kicks we talked about stem cell and cyclophosphamide IV -vs- pill form. He said studies show IV is no better than pill, fyi. He was extremely thorough because there was a med student observing. He still says I am a Cellcept success story so that I will take. He did say the telangiectasias are going to more than likely get worse. So, if you see a tangelo walking around, don't fear, it's just me. He is trying to get my hospital to be a stem cell transplant center. I am not at all in line for stem cell, he was just informing me. Love my dr.
xo
Jen



#2 Vee

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Posted 25 September 2007 - 07:36 AM

Hey Jen,

Great news!!! Love to hear the word "stable"!!! Congrats on that! So you're a tanglo now, eh? Made me laugh, thanx! Don't ya' just love it when doctor has a student in the room and is showing off! We usually get a longer appt. on those occasions!

As for the cellcept. My mom's doctor just wrote her a script for that, but she is having a hard time putting it thru the ins. They want her to pay $171 monthly, and she's just not able to do so. So she's trying some program that the doctor's office put her in touch with. These hold ups get me so mad. They take months to get thru, when you could be well on your way to feeling better. I hate to see her being put off in this way. Oh well, hopefully soon she'll get good news and they'll help her out.

Again, congrats on the stable lungs. Now stay warm!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#3 barefut

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Posted 25 September 2007 - 09:18 AM

Hi Jen,

That's great news about you being stable! My PFT was last Tuesday and I have remained stable too. So I guess we are both Cellcept sucess stories. Too bad I can't afford it and have had to go deep into debt to be such a sucess! :P :(

With winter coming just around the corner, I'm wishing you toasty warmness! I think those electric gloves are starting to sound good.

I always like it when my doctors have an intern to show off to. I always get more attention but at the same time I sometimes feel like a guinea pig. My first visit to my gastro doctor, he spoke to his intern like I was just an interesting subject and not a human being.

I am glad you have such a good doctor.


Vee,

I had to fight a little bit with Roche to get an application for their assistance program. I just sent them a letter explaining my dire financial situation and they sent me an application. Gee, it's like you have to apply for an application!

I have Rx coverage but still cannot afford the 30% I have to pay out of pocket.
At my rheumatologist visit last Tuesday, she filled out and signed her portion of the application but I forgot to ask her for the hand written prescription that Roche wants so I am waiting for that to come in the mail to me before I send it off.

It is nerve racking because I am so afraid of being turned down! Soon I will not have COBRA coverage anymore and IF I get into a subsidised insurance program, my out of pocket will be even MORE because they only pay 50% for prescriptions.

Here is Roche's mailing address if you want to contact them on behalf of your mother.

Roche Patient Assistance Program
P O Box 66763
St. Louis, MO 63166-6763

Good Luck!
Love,
Barefut

#4 peanut

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Posted 25 September 2007 - 09:36 AM

I'm so glad to hear you're stable and a success story. What an encouragement.

hugs, peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#5 kelowna52

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Posted 25 September 2007 - 10:26 AM

Congrats Jennifer, that sounds great. As far as the Raynauds I am finding with the cooler weather approaching I am feeling the Raynauds coming on more and more frequently now.

Jackie S.

#6 Sweet

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Posted 25 September 2007 - 11:13 AM

Jen, Terrific news about your stability.

You always know how to make me laugh. Your "tangelo" comment almost made me pee my pants. You are beautiful inside and out my dear.
Warm and gentle hugs,

Pamela
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#7 Vee

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Posted 25 September 2007 - 12:44 PM

Barefut,

Thank you for the address, but I think my mom is trying to go thru Roche. She calls it Roush, but I've not seen the spelling of it, I'm assuming it's the same thing. She is now in the second part of calling the doctor back to see if he needs to write a letter or something. I told her that all of this is normal, they make you go back and forth, I think to weed out those who do not really need it. I'm not sure, but I told her to hang in there and keep at them, and they'll probably give in soon. I hope. Fingers crossed for her!

Thanks again! You guys are great!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#8 janey

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Posted 25 September 2007 - 03:38 PM

Hey to the sweetest tangelo in the bunch,
Congratulations on your PFTs being stable! Stability is a good thing.

I had an ECHO yesterday and the PA pressure was the same as 6 months ago even though I went to half dosage of Bosentan after that ECHO. My PA pressure is between 25 to 30 which could actually be considered high normal. If it weren't that the bosentan was helping my Raynaud's I might ask to come off it completely. As you are already experiencing, it's starting to get cold so they Raynaud's is acting up again, but nothing I can't handle. Winter wear comes out this weekend!

Did you see the news article last week about IV cyclophosphamide vs. oral? Apparently, a recent trial found that IV cyclophosphamide was safest when infused, however, the effectiveness seems about the same as your rheumatologist mentioned. I took oral cyclophosphamide for 3 weeks and never, never again for so many reasons!

Again - congratulations my sweet tangelo! Stay warm.

Big Hugs,
Janey



#9 Clementine

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Posted 25 September 2007 - 04:06 PM

Thanks to the best people ever!

Janey, I bet that's the study my doctor was referring to.

I am so sorry about your PH. Icky. My Dr. made me aware yesterday that PH drugs were an option but he wasn't recommending we do that. I am guessing it's a last resort if Niacin and the calcium channel blockers don't work but correct me if I am wrong. He mentioned the cost of those drugs as one downfall. I am just glad there is a treatment at all.
Mine was 45 two years ago and now it is 25. doctor thinks it is the Cellcept that lowered mine. I hope you seem some lower numbers, although I don't think you are complaining about 25 to 30.

Thanks everyone and as always, thanks Janey.
Tangelo

#10 janey

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Posted 25 September 2007 - 05:50 PM

Tangelo,
I'm certainly not complaining about about 25 to30. Exactly a year ago, my PA pressure was 45 so I'm very pleased! I've been on Bosentan for a year and cellcept since April, so I'm attributing the decrease to the bosentan.

Big Hugs,
Janey

#11 barefut

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Posted 26 September 2007 - 03:11 AM

A new screen name for Jen? :P

#12 Clementine

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Posted 26 September 2007 - 05:00 AM

YES!!! Can someone please change my screen name to Tangelo? Please? I love it! It is so me.

#13 Shelley Ensz

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Posted 26 September 2007 - 05:33 AM

Hi Jennifer,

It's done, you are officially dubbed "Tangelo"!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#14 Clementine

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Posted 26 September 2007 - 05:35 AM

Shelley,
Thank you! I LOVE it!!!
Tangible Tangelo

#15 jefa

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Posted 26 September 2007 - 06:17 AM

Hello, Tangelo, and welcome to the ISN Sclero Forums. I feel like you are already an old friend. :lol:
Warm wishes,
Jefa

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#16 Buttons

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Posted 26 September 2007 - 06:53 AM

It's a brilliant screen name Tangelo!

Take care

Jensue

#17 Sheryl

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Posted 26 September 2007 - 07:10 AM

Jen,
Is this screen name number 4 for you? Puppies1234 - Itiswhatitis - Jennifer - Tangelo wow! Pretty soon we won't know who is the real you. Will the real Jennifer STAND OUT. Yeap! she will will glow. Cute name my friend. Sheryl
Strength and Warmth,
Sheryl

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#18 Clementine

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Posted 26 September 2007 - 08:05 AM

Sheryl! You funny! One time something funky happened with my MSN and I used Itiswhatitis. Then with Puppies, I had some issue too! This change is by choice so yay for me!

:P Tangelo <_<

#19 RememberingToSmile

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Posted 26 September 2007 - 08:19 AM

About cellcept costs.. Did you check if she's eligible for mail order service?

...I was paying the hundreds of dollars a month then realized my insurance included mailorder service that only charged $10/month (duh!) I've heard similar stories from others.

Good Luck.

RTS

#20 Vee

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Posted 26 September 2007 - 10:43 AM

RTS,

No I don't think she did check about mail order. I'll call and mention it to her. Thanks for the idea.

Tangelo, huh? What's next? Sybil? :lol: Keep 'em laughin' Jen!

Hope everyone's having a great day!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee