Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

For Those Of You That See An Expert


  • Please log in to reply
7 replies to this topic

#1 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 01 November 2007 - 09:37 AM

I've been thinking about going to another scleroderma expert, just to get a second opinion on my treatment. After communicating with Dr. Theodore, he urged me to try to get into a trial study rather than rely on an experimental drug, and unfortunately, I do not qualify for any of the current trial studies.
It caused me some grief. Another option would be to meet with another sclero related pulmonologist.
Jennifer

#2 KristenS

KristenS

    Bronze Member

  • Members
  • PipPip
  • 18 posts
  • Location:Maryland

Posted 01 November 2007 - 10:03 AM

Tan,
I have one of the leading doctors in the world. I have lucked out as I live near Johns Hopkins in MD. He not only learns from others all over the world but teaches. If you want to, e-mail me and I will send you his e-mail address and he may possibly have a name of someone that may be in your time zone :( . That is unless you want to fly all the way to the east coast and see him. I must say I do love him and he does have the best staff. I even met with the Today show and Bob Saget, but at the time was deemed "not sick enough" Can you believe being "not sick enough"? HA.
Any way good luck
Kristen
I hope that your day goes well and you don't have any worries.

#3 Gidget

Gidget

    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 01 November 2007 - 12:12 PM

Jennifer,
I am not sure what clinical trials you were looking into. The SCOT trial has many disqualifiers including use of any dosage of oral cyclophosphamide and IV cyclophosphamide is limited to no more than 3 doses. The Assist trial offered at Northwestern doesn't have any limitations with regards to drug usages however, you are required to have a strong heart. I understand that it is discouraging working through the clinical trials as the decisions you make today may disqualify you for a study tomorrow. Some doctors are not up on the clinical trials and are prescribing medications that right off the bat disqualify you from the clinical trials ie. oral cyclophosphamide for the SCOT. I had a RX for oral cyclophosphamide and when I questioned the Dr. that it would disqualify me, she responded that it "wasn't true otherwise everyone would be excluded". Well, I called SCOT directly and got the answer that "any usage of oral cyclophosphamide excludes" you from the trial. I never went back to that doctor again.

By all means you should see another expert. In my case, I saw 4 or 5 of them and learned alot. Right now, I see 2 different Rhuemys. I see Johns Hopkins who comes up with a treatment plan which unfortunately is too conservative for my personal liking. My local rheumatologist administers the plan and tweeks it up to be more aggressive. For now, it works for me.

Best of luck. Gidget



#4 Vee

Vee

    Silver Member

  • Members
  • PipPipPipPip
  • 215 posts

Posted 01 November 2007 - 01:12 PM

Tang,

Anytime you have the slightest doubt in your mind, a second opinion can only give you reassurance. Even if you are seeing a specialist doesn't mean that all the specialists think alike. You need to "click" with your doctor. I just got back from U of M with my mom. You do what makes you happy and feeling better. And if you have the means, then by all means, just do it! Posted Image
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#5 GocartMoz

GocartMoz

    Silver Member

  • Members
  • PipPipPipPip
  • 164 posts
  • Location:Florida

Posted 01 November 2007 - 04:27 PM

Tangelo,

I don't know if you are willing to travel or not, but I was very impressed with Dr. Joe Shanahan, who used to be at Duke, when I saw him. Unfortunately for me, he moved to Wilmington, NC and is no longer involved with the SCOT study as I understand it. In any event, I certainly would recommend him if you are willing to travel to Wilmington.

Dave in FL

#6 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 01 November 2007 - 06:15 PM

Just an update to the scleroderma experts list, Dr. Molitor has moved and is no longer at Virginia Mason in Seattle. He has a replacement and I will find out who and post.

Barefut

#7 Clementine

Clementine

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 02 November 2007 - 03:37 AM

Thanks everyone. So far, none of the clinical trials are appealing to me, when I consider my level of scleroderma. I don't have good numbers on paper, but I feel pretty good. I'm just trying to stay current and I don't want to miss anything.
I am currently seeing an expert, but I don't think it would hurt to see another one, because I just need peace of mind. There are a lot of what ifs that I have.
I'd only go see another expert if my insurance allows it and I've not determined that but I can travel if it's for my health's sake.
Thanks you all for the referrals.
Kristin, what did you do with Bob Saget?
Tangie

#8 KristenS

KristenS

    Bronze Member

  • Members
  • PipPip
  • 18 posts
  • Location:Maryland

Posted 05 November 2007 - 09:45 AM

I got to meet with him several years ago re. a documentary that he was making on SD. I look back on the pics that I have and I could DIE!!! I was so bloated on prednisone and other meds that I looked like I could pop! I was at least 40 lbs. heavier than I am now. It is so interesting to see him in stand up, because he is so "raunchy" and off-color, and then to know that he isn't like that when you sit down and talk to him. But he isn't the "dad from full house" either. He is somewhere in the middle, a real person who unfortunately has been affected by this as well. But it is nice that he has the $$ to help. And he was so upbeat.
I hope that your day goes well and you don't have any worries.