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Newly, finally, diagnosed!

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#1 Angel Sky

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Posted 08 August 2009 - 05:32 AM


I'm a new member who finally got the right diagnosis after 5 years. For 5 years I believed that
I had RA (rheumatoid arthritis). In all this time, I have been taking the wrong medicine. I know many of you have the same stories and I would like to discuss this a little more.

The problem is I have been having this cough for 4 and 1/2 years and none of the RA doctors took it seriously. The other doctors told me that it was probably allergies or post nasal drip. Didn't they know that RA and lung problems go hand in hand? They NEVER in 5 years sent me for an xray or CT scan. Come to find out I should have been having these yearly!!!!

Finally found a good doctor(my 4th!!!!) who sent me for tests and xrays. I now know I have
Intestitial lung disease (along with the Sclero) and it's been getting progressively worse!!! I spent 4 days in the hospital having an open lung biopsy to find this out.

My new DR wants me to go on clinical trials of Disatinib for the Scleroderma. Anyone out there who is doing this??

#2 Amanda Thorpe

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Posted 08 August 2009 - 08:36 AM

Hello Angel Sky

I am so glad you have found this forum and so sorry your scleroderma journey has involved waiting 5 years for a correct diagnosis. Unfortunately it is not uncommon for a scleroderma diagnosis to be a long process so much so we have a page all about difficult diagnosis that you may finr interesting.

Lung involvement can also be a feature of scleroderma and you may find it helpful to have a look at the information we have about interstitial lung disease.

I have never heard of disatinib so looked on the internet and found it spelled either disatinib or dasatinib either way it's a cancer drug being trialled for use in cases of pulmonary fibrosis in people with scleroderma and I assume this is why your doctor wants you to trial it. Other cancer drugs are regularly used to treat pulmonary fibrosis in scleroderma patients such as cytoxan, it may be worthwhile discussing with your doctor the benefits to you personally of either drug. Hopefully someone will chime in with more information about the trial but if not your best bet is to talk it over and the alternatives with your doctor so you can decide.

I know it has been a hard slog for you to arrive where you are now but at least you are finally here. Take care and keep posting.
Amanda Thorpe
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#3 debonair susie

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Posted 08 August 2009 - 11:26 AM

Welcome, Angel!

I am SO glad you have gotten diagnoses and REALLY glad you have found this wonderful site!

It IS unfortunate when it takes a long time to get diagnosed, yet many of us, have had to wait months, even years...or are waiting still.

In your case, I am glad you now have a dr who is working toward helping you.
Please keep us posted on how you are doing?
Special Hugs,

Susie Kraft
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#4 nan


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Posted 08 August 2009 - 11:46 AM

Welcome! You have come to the right place for support. I am so sorry that it took so long for a diagnosis. It sounds like you are getting good treatment now. I send good vibes your way.

#5 janey


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Posted 08 August 2009 - 11:52 AM

Welcome Darlin! I'm so sorry that it took you so long and so many doctors to finally get a diagnosis. Some of use get lucky and get diagnosed quickly, but others sometimes take years as you have witnessed.

The clinical trial for Dasatinib popped up on our radar just last week, so it's very interesting that you have a doctor that wants to enroll you. It's a new clinical trials, so this doctor must really be on top of things. We've added the trial to our clinical trials page, so please check it out. Just click on the link provided.

Clinical Trial for Dasatinib.

If you do enroll, thanks! We need more people that are willing to try new medications, since overall, medication for scleroderma and scleroderma symptoms are limited. Please keep us up on how you are doing and what you decide. We look forward to getting to know you better.

Big Hugs,
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#6 Angel Sky

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Posted 09 August 2009 - 04:51 AM

Thanks, everyone for all the kind words. All of my friends and aquaintances haven't really heard of Sclero and can't offer much support. My husband is great, and is urging me to try the clinical trials even though they would be 4 hours away in Charleston( I live in Greenville, SC)
and I don't really know how I would get there! He is the one who researched and found out about The Univeristy Medical Hospital of SC which is having the clinical trials. I'm supposed to get more info next week on the trials. I'll keep you posted. Meanwhile, on Friday, I'm having my Thyroid out. I'm a little nervous, though it's only an overnight stay.
Also, I never thought I'd have to saythis, but anyone have any success at keeping the weight ON? My husband is stuffing me every day, and I still keep losing!!

Thanks for listening!!! :)

#7 LisaBulman


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Posted 11 August 2009 - 03:16 AM

Hi Angel,
I'm so glad you finally receievd a diagnosis! It is a good that you were persistant and kept going to different doctors until you found one that could properly diagnose you.

As for enrolling in a study, I say if you can, do it. I'm currently on my fourth and as soon as I'm done with this one, I will be enrolled in one immediately after. You tend to get the best care when you are in one because they doctors have to closely watch you. There is usually some sort of compensation too.

Good luck with the thyroid surgery. Keep us posted!

Lisa Bulman
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