Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Boston rheumatologists


  • Please log in to reply
16 replies to this topic

#1 warmheart

warmheart

    Silver Member

  • Members
  • PipPipPipPip
  • 109 posts

Posted 20 August 2009 - 04:32 PM

Hi everybody,

Sorry I'm such an infrequent poster!

A quick question--can anyone recommend a rheumatologist in Boston who treats a lot of scleroderma patients? I'd really appreciate any info. Thanks a lot!

--warmheart

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 20 August 2009 - 05:33 PM

Hi Warmheart,

Here are the entries for the Scleroderma Clinical Trials Consortium for Massachussetts and also Providence, RI since it's (relatively) close to you. Good luck and I hope this helps.

Institution: University Massachusetts Medical School
UMass Memorial Medical Center
Rheumatology
119 Belmont St
Worcester MA 01605

Coordinating Investigator: Alkassab, Firas MD

Telephone: (508) 334-5224

Institution: Boston University School of Medicine
Rheumatology Section, E-5
80 East Concord Street
Boston, MA 02118

Coordinating Investigator: Merkel, Peter, MD, MPH

Other Local Participants: Simms, Robert, MD

Lafyatis, Robert MD

Telephone Number: (617) 638-4310
Fax Number: (617) 638-5226


Institution: Rhode Island Hospital and Brown Medical School
2 Dudley St Suite 370
Providence, RI 02905

Coordinating Investigator: Lally, Edward V., MD
Director, Division of Rheumatology

Other Local Participants: Zimmermann, Bernard, MD

Telephone Number: (401) 444-2248
Fax Number: (401) 444-3558
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 20 August 2009 - 05:47 PM

Thank you so much, Jeannie! This is very helpful.

Hugs,

warmheart :)

#4 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 21 August 2009 - 04:01 AM

You are very welcome! Thanks for the hug. Have a great weekend.
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#5 aniwallar

aniwallar

    Senior Bronze Member

  • Members
  • PipPipPip
  • 92 posts
  • Location:Soeul, South Korea

Posted 22 August 2009 - 09:46 PM

Hi Warmheart:

There is a great doctor at Boston University. His name is Dr. Merkel. Look him up. He only sees people with scleroderma and vasculitis. He also teaches other reummatholigist. I had a good experience with him but I moves across the world.
Good luck,

Ani

#6 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 23 August 2009 - 04:25 PM

Thanks so much, Ani!

Hugs,

warmheart :)

#7 Patty1

Patty1

    Senior Bronze Member

  • Members
  • PipPipPip
  • 38 posts
  • Location:Massachusetts

Posted 24 August 2009 - 05:29 AM

I can vouch for Dr. Alkasab at UMass Memorial in Worcerter. I have seen him, as well as several other dr.s in the Rhematology Center. They know me well!
Just coming back to the forums under a new name. I was layed off in February, and had to give up my work computer.
Patty

#8 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 24 August 2009 - 02:39 PM

Thanks, Patty! Worcester is kind of far for me (no car), but I appreciate the info.

Hope your job situation is OK by now! Layoffs are rough.

Take care,

warmheart

#9 sclerster

sclerster

    Newbie

  • Members
  • Pip
  • 8 posts

Posted 25 August 2009 - 05:22 AM

Hi Warmheart.
I treat with Dr. Merkel and Dr. Lafyatis, both great doctors, also fine people.
Dr. Merkel has a wonderful nurse, Nancy. Many clinical trials on going there.

Best of luck

Doug

#10 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 25 August 2009 - 04:04 PM

Hi Doug, and thanks! I've heard nothing but great things about the people at BU.

Take care,

warmheart :)

#11 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 29 August 2009 - 04:30 AM

Hi warmheart,
Sorry fo rthe delay in posting to you. I see Dr. Simms at BU. He is in the same office with the others mentioned. They all work together, have great nurses and are always involved with clinical trials. I am actually in my 4th trial with them and when it ends in November I'll be rolled into my fifth. Don't feel like you have to do the trials...I don't mind them so I sign up for every one I am eligible for.

You can't go wrong with anyone of them!!!

Good luck and let us know who you see!

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#12 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 31 August 2009 - 03:37 AM

Hi Lisa,

Thank you! I'm definitely going to see the rheumys at BU if that's possible. So far I've been working on figuring out how to navigate the system there.

Believe it or not, even though I basically lost my esophagus back in the last millennium (severe scleroderma-type motility disorder) and have Raynaud's (dx'd by my primary care physician, who walked into the exam room, picked up my hand, and said, "See this?..."), minor skin tightening, etc., etc., I've never seen a rheumatologist at all! I'm trying not to run on and on, but I've had a lot of problems over many years. I guess the thinking was that because I didn't have lung issues it was best not to complicate things unnecessarily (I did have a consult with a great pulmonologist about 6 years ago, who found that my lungs were in great shape--PFTs excellent, and scleroderma esophagus but no fibrosis on the CT).

Anyway, to make a long story short(er), my lungs are no longer in the greatest shape and it was my primary care physician who recommended that it's time I see a rheumatologist. She's at a huge group practice, but there are only 2 rheumatologists there within a reasonable distance, and neither of them has any special interest in scleroderma. I'm tired of having to be my own rheumatologist! I want a doctor who knows better than I do what screening tests to order and how often, etc. But even though the word "scleroderma" is all over my hospital charts, I've never been officially diagnosed with it, so I feel sort of dumb asking for an appt. at the scleroderma clinic! And asking my primary care physician for a referral there instead of to the group practice's rheumatologist.

When I called BU's rheumatology clinic, the lady sent me to the scleroderma clinic for scheduling--apparently it's a special dept. I don't have a mobile phone for call-backs and so I've been trying to catch the appt. secretary at her desk. When I do reach her, what should I say? I feel pretty stupid, trying to explain why I need an appt. at the scleroderma clinic when I haven't even been officially diagnosed with scleroderma by my primary care physician. <_<

Sorry this is so long. Thanks to all of you who replied--I do appreciate it!

Big hug,

warmheart

#13 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 31 August 2009 - 04:13 AM

Hi warmheart,
Call 617-638- 7460. If you have an hmo you will need a referral to the office. They may need to have the referral before they make the appointment for you but I am not sure. I would just tell them that you are in the process of being diagnosed with scleroderma and recently developed lung issues. I'm not sure if they will even ask.

You should definately talk with your primary care dr and explain that you have spoken to a few people who highly recommend these specialists for scleroderma care. Explain that you don't want to fool around anymore and you need someone with indepth knowledge of scleroderma.

Once you get in for your appointment they will probably schedule you for a battery of tests. I know the hospital like the back of my hand so if you need help navigating, please let me know!!

Let me know how it goes when you reach them!

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#14 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 31 August 2009 - 05:56 AM

Hi Lisa,

Thanks again! Well, I'm relieved to have good news to report. Here are the details, in case they're helpful to other people: I called the number you just gave me, and just like last time I called the same number got transferred right over to Mary Lou at the scleroderma clinic. She couldn't have been nicer or more helpful. I explained my situation and she told me that I just have to contact my primary care physician and get my recent records sent to her (including some old GI and pulm records, and a CD of my last chest CT). Asking my primary care physician for a referral to Dr. Simms and getting my records faxed was super-easy; it's already taken care of. Then she goes over the records with Dr. Simms and they schedule a first appt. She says the first appt. is as long as 2 1/2 hours, because patients often have lots of questions. That's pretty amazing, isn't it? I'm surprised that he even takes new patients at all. At this point I've been at this so many years that I don't really have a lot of questions except about my lungs, because that's the new thing. I doubt I warrant all that attention!

It's a big relief to be followed by somebody who knows a whole lot more than I do, for a change. I'm looking forward to retiring from the practice of rheumatology :lol: , though I've been through a mega diagnostic workup before (for my paralyzed esophagus), so I know enough to dread all that. It's a huge amount of stuff to keep straight and show up for and do, stretching out over several weeks, and you don't even get a paycheck at the end. But at least at the end of it I'll know where I stand and what to expect for the future. Hopefully I'll find out I'm going to live to be 100 and have nothing to worry about! And I'm grateful to live a few minutes away from a great scleroderma center, when so many people have to travel hundreds of miles or farther for appts.

Anyway, thanks again, Lisa and everyone. I'll keep you posted!

Hugs,

warmheart

#15 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 31 August 2009 - 12:11 PM

GREAT NEWS!!!!!

Yes the initial appointment will take that long because he will ask you tons of questions and look you over from head to toe. He'll do a skin score, listen to your lungs etc... He might have a resident dr with him also. Sometimes the residents will come in first then he'll come in a few minutes behind to see if they have picked up on everything. They are really great about teaching all about this disease to the up and coming dr.'s.

Please do let us know when your first appointment is!!! I'm excited for you!!

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#16 warmheart

warmheart

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 109 posts

Posted 31 August 2009 - 02:54 PM

Hi Lisa,

And thanks once again. I wouldn't exactly say I'm excited (I'm sort of doctorphobic), but I'm definitely relieved and grateful to be getting an appt. and finally get everything sorted out.

I'll keep you all posted. You're super, and I really really appreciate everything!

Hugs,

warmheart

#17 djr16489

djr16489

    Newbie

  • Members
  • Pip
  • 4 posts

Posted 01 September 2009 - 06:18 PM

Greetings. I am from North Dakota and also see Dr. Simms every 6 months. Outstanding!