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Dr. Medsger - U. Of Pitt


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#1 Lauriejill

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Posted 30 December 2006 - 06:28 AM

Hello Friends,
My rheumatologist has suggested that I go to Pittsburgh (I live in CA.) to see Dr. Medsger. Have any of you been to see this MD.? Did the visit help your diagnosis, treatment and understanding? I am struggling with my treatment .....and perhaps going to an expert will give me just enough information to trust the MD's enough to listen to their advice. I am very tired of having to make decisions about meds that are potentially dangerous vs. trying to treat this weird disease. Everyone sees it so differently .... aggression vs. caution, factual studies vs. practical experience..etc.etc.... and even my MD's dont all agree ..... will another MD's voice in the mix really help? Does Dr. Medsger inspire the kind of trust needed to follow potentially damaging treatment?
Help!
Laurie Jill

#2 Elehos

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Posted 30 December 2006 - 08:22 AM

Hi Laurie Jill,

Although I haven't been to Dr. Medsger, the name sure comes up enough. A lot of the problem with figuring out meds most often boils down to personalities. Some doctors have more of a sense of adventure while others, like mine, tend to err on the side of caution. It is so difficult to know what to take, but I keep my eyes open on the board and in the medical info on the sclero site to see what meds or treatments are named, then research them thoroughly. Understanding the side effects of a whole slew of meds before they're brought up gives me more security in deciding quickly. I always joke about the new meds on the market when they're offered by telling the doctor, "I'll wait a year; if no one dies, I'll try it." A few of them almost did me in, one was an antibiotic (I'm allergic to sulfa drugs) and two others were new NSAID's for OA (one now off the market), and my liver took a hard hit. I don't look good in yellow. Knowledge is power, so keep reading the posts, and hopefully you will feel more comfortable calling the shots about your meds.

Best wishes to you,
Elehos

#3 Margaret

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Posted 30 December 2006 - 01:51 PM

Hi Laurie.....I am also new to this forum as my son has had postive blood work for scleroderma the beginning of Nov. I had my son in to his Pediatric rheumatologist on Thurs and he suggested I take him to a Sclero specialist in Pittsburg....must be the same guy. It would only be a 4 hr drive for us since we are in eastern Pa. He's not sure what to do with him.....being 18 with probable sine Scleroderma. Right now, we are in a wait and see mode.....he wants all the blood work redone the first week in Feb. If it's all the same, then he's going to treat him as having sS and recommends us going to Pittsburg because he has never had a teenager with sS. He also said that his esophageal dismotility is probably permanent.

On the plus side, the ped. gastro doctor did not see signs of 'watermelon' stomach when he did the endoscopy 2 weeks ago. We are still waiting on approval for CT scans of the chest and abdomen and an MRA of the heart. Gotta love the insurances nowadays!!! The MRA of the heart is going to be a bit tricky they said with the pins in his rt hip.

I have been reading all the posts and learning so much from this site. I thank you all for posting your ups and downs and especially how much you feel pain wise. I know my son is 'hurting' tonight because we went out to dinner and he ate too much. He's grabbing /hitting his chest....he's got to be uncomfortable. Take care, Everyone.
Margaret

#4 GocartMoz

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Posted 31 December 2006 - 05:28 AM

Hi LaurieJill,

Back in June, my local rheumatologist sent me to Dr. Medsgar to confirm his diagnosis of diffuse scleroderma. I found both Dr. Medsgar and his staff to be very informative and compassionate. He is definately recognized as a leader in the field of Scleroderma and I certainly cannot see any harm in consulting with him. He is the dr. that started me on the clinical trial road. I would definately recommend you see him. Kudos to your doctor for making the referral. Good luck.

Dave

#5 Tara

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Posted 31 December 2006 - 06:08 AM

I was diagnosed with diffuse sclero in Feb 2005. My local rheumatologist sent me to Dr. Medsger to confirm the diagnosis. My experience my be different than others, but I don't think the visit helped anything. His nurse Carol was very nice, etc. However, I found him to be anything but. I just think his bedside manner was a bit cold, especially in delivering the news to a 24 year old woman who just had a baby that she may not be alive in 5 years. Another thing neither my local rheumatologist nor I cared for is that he wanted to put me on D-penacillamine medication. After talking with my rheumatologist and doing my own research on the meds, we dedided that wasn't a good option. Now I'm on Cell Cept and doing great with no side effects from the meds.

I did search out my own 3rd opinion from Dr. Kantor at Ohio State University. I found him to be much more personable and the visit was great.

My rheumatologist has told me that Dr. Maureen Mayes at the University of TX is great, too. That might be closer for you. I also know that there are good Sclero doctors. in WA state, the Mayo Clinic, and at Northwestern Univ. Dr. Medsger is a specialist and knows his stuff, but there are other options to consider.

#6 Gidget

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Posted 01 January 2007 - 09:28 AM

Laurie,
I saw Dr. Medsger in October. He clearly explained my disease and what I could expect. He answered all my questions completely. He was very thorough in his examination and while I had the Lung HRCT report, he did not prescribe a treatment plan until he had a chance to actually review the actual HRCT films. I found his nurse, Carol, to be wonderful and sympathetic. Her advice was very helpful as I was frustrated at the time with the disease. Additionally, Univ. of Pitts is researching Sclero blood as they hope to try to predict where the disease will go. Should they perfect this, they can tell people if they are at the point where the disease is "leveling" off or if they are at the aggressive point of the disease. For me, I am not looking for my "expert" to be friendly -- my local rheumatologist's office is that -- but I do want my "expert" to be competant and thorough -- and I belive Dr. Medsger fits this bill. For me, I traveled about 400 miles to see him and it was worth the trip.
Best of luck.
Gidget.

#7 Lauriejill

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Posted 01 January 2007 - 06:31 PM

Just wanted to thank everyone who replied with their experiences of Dr. Medsger. I am still quite conflicted about my treatment options and of course feel that the more information I get somehow the answer will become clearer. I am beginning to feel that this may not be the case with scleroderma since there seem to be so many different opinions and everyone's disease is so different in presentation and course. I can't really tell if my "fence sitting" is some sort of denial or just fear of doing the wrong thing ...I am hoping that the time will come when I feel more sure of which way to turn.
I do really appreciate hearing from all of you .....
Lauriejill

#8 Gidget

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Posted 02 January 2007 - 04:08 AM

Laurie,
I am sorry that you are struggling with your treatment plan. Many of us have been in this same boat. Sclero is an interesting disease. In my journey, I have had 2 doctors tell me that there is nothing they can do for me -- who would have guessed that -- and one was a rheumatologist. But in reality, it was the best thing they could have said as it forced me to seek out the "experts". I'm sure you will make the right decisions for you. All the best. Gidget

#9 janey

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Posted 02 January 2007 - 04:37 AM

Lauriejill,
I think what you are going through right now is one of the few commonalities that we all have. All of us have probably felt conflicted about our treatments at one time or another and I'm sure we all have felt this disease was going to be mild. During the first couple of years, I really felt my rheumatologist was doing the right then and I still do (for that period), but the treatment didn't change when additional problems started to develop. For 3 years I thought this disease was just going to be a nuisance even after developing heart problems during year two, I still thought that. I think the rheumatologist picked up on that attitude and treated me accordingly. It was not until I recently developed lung involvement that we both jumped off the fence and started making major changes in the treatment. Of course a lot of that change was driven by the pulmonary doctor. Now after 3.5 years, I've decided it's PAST TIME to see a scleroderma specialist. I'm not sure if he'll tell me anything different or suggest changing my current treatments, but right now I feel that I need that second opinion. AND to be perfectly honest with you - this is something I should have done 2 years ago when I got the heart block. What do they say about hindsight? :(

Big Hugs to you,
Janey

#10 Lauriejill

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Posted 02 January 2007 - 07:28 AM

Janey and Gidget and everyone else too....
Thank you so much for your replies. When I got up this morning this disease was on my mind as I was hurting and tired so I decided to take a look at the forums.
Its interesting how sometimes I want to delve into trying to "know" about everything and then other times I just go into not wanting to think about it at all feeling overwhelmed.
But both of your replies helped me to make the decision to call Dr. Medsger. I do believe that my rheumatologist wants me to try more aggressive treatment and has not been able to talk me into it and is hoping that an "expert" will help me make some tough decisions. I, too, for this first year thought the disease was nothing more than a nuisance .... but as I know myself to be getting more affected I begin to get a myriad of psychological responses as well and as you know they don't exactly help my mind to be clear. So my thinking is not exactly without distractions of mood and attitude.
How does a person stay positive, living the best life they can live with gratitude and an open heart at the same time as having to deal with medications that make you sick .... and worsening symptoms that make your former plans for the future very much in question.... as this is the challenge...but I digress.
Dr. Medsger's nurse has already called me back and I am on target for an appointment next week if I can get all my "ducks in a row". I will of course share whatever information I receive!!
Thanks so much for helping me make the call.
Lauriejill

#11 elainegh

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Posted 03 January 2007 - 08:22 AM

Hi Lauriejill
I was just diagnosed with scleroderma on 12/13 by a Dr. Wallace at Cedars. I had had blood tests in November and had a positive antiSCL 70 and SCL 70. The local rheumatologist said I had undifferentiated connective tissue disorder and put me on plaquenel. I did research on the internet and called him to tell him I thought I had scleroderma based on the blood work. He told me to stop looking on the internet. On my own I found Dr. Wallace who confirmed my own diagnosis. My husband is a physician and we called Dr. Medsger in Pittsburgh who talked with us on the phone for a half an hour and was absolutely wonderful and helpful. He did however suggest I find a local scleroderma specialist which I did at UCLA called Dr. Daniel Furst. I am seeing him tomorrow. Dr. Philip Clements is also at UCLA and they are scleroderma specialists and researchers par excellence. I don't know where you live in California but there are specialists up north too.
If this is helpful let me know.
Elaine

#12 Lauriejill

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Posted 03 January 2007 - 03:42 PM

Thanks so much Elaine ... for your reply!
I would love to hear about your visit with Dr. Furst at UCLA....so please let me know what you found out. I went to see him a few months ago and he did a very thorough history but no real examination. He spent a great deal of time with me and was more than kind with his invitation to see him again if I needed to. My question for him at the time was whether or not he thought I should be taking cytoxan. My pulm. MD and another local rheumatologist thought cytoxan was too aggressive at this point. He seemed to agree with them. He also suggested that I have a heart catheterization to r/o pulm. hypertension.
My local rheumatologist who is VERY GOOD (my opinion) thought that Dr. Furst was too much of a researcher and not enough of a clinician and since he had apparently talked over my case with Dr. Medsger at a rheumatology convention (is that what they call them?) he was anxious for me to go see him. So I am off to Pittsburgh for yet another opinion.
Keep me updated and I will do the same ....

Lauriejill