Specialist at Mayo Clinic, Scottsdale AZ

Is any one familiar with Dr. W Leroy Griffing at the Mayo Clinic in Scottsdale, AZ? If so, what can you tell me? Thanks.

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I found these two articles at http://www.ncbi.nlm.nih.gov/pubmed?term=Griffing%20WL[Author]%28scleroderma %20OR%20%22systemic%20sclerosis%22%29 , which Dr. Griffing wrote. One of these only mentions scleroderma. The other concerns scleroderma. This is not very many articles compared with other scleroderma specialists out there. A number of scleroderma specialists have each written over 100 articles on scleroderma. Griffing's other articles deal with giant cell arteritis, Whipple's arthritis, eosinophilia- myalgia syndrome, systemic amyloidosis, Sjogren's Syndrome, polymyositis, and HLA-antibody complexes. So I would say he's not really demonstrated that he has an interest centered specifically on scleroderma.

A search of clinicaltrials.gov shows there is not a single currently recruiting clinical trial on scleroderma in Scottsdale Arizona. Most scleroderma centers do have ongoing scleroderma clinical trials. Not this one!

Maybe he's a good doc, but I'd like to see more interest centered on scleroderma.

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Dr. Leroy Griffing was my second opinion after being dx here on the east coast at the University of Penn. I was eight months into the disease and by the time I got to Arizona I had already seen 7 doctors. Dr Griffing is a very caring and thorough doctor. If you never experience the Mayo Clinics care, it is the best in the country and people come from all over the world. Dr. Griffing put me on cellcept. I presented with a skin score of 27 after 8 months, GERD, GAVE (watermelon stomach) and lots of pain in my legs, feet, shoulders, arms and hands. The work up took 5 days. He started a course of treatment and when I returned here to New Jersey I continued my care at John Hopkins Scleroderma Clinic in Baltimore MD. Cellcept was continued for 2 years. 2 years after that my skin score is now a 3-4 tightening on my fingers only. The gerd is managed with nexium and the watermelon stomach GAVE is gone. Dr Griffing care set the stage for my well being today. A good scleroderma specialist makes all the difference. My dx diffused scleroderma.

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Carol56, that's outstanding! I'm glad you had a good experience with him!

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DaisyDo, I was so sick that I actually felt that he saved my life. He claimed that they had good results with cellcept. Not to sure about their clinical trials at the time but advised me in all aspects of treatment and if necessary SCOT. Just recently I joined their study on Gastrointestinal and Fatigue data in Scleroderma (Ssc). They get 5 stars.

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Carol, can you tell me some of the tests he performed? did he have you busy with tests during your initial app. and your your results app.?

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I so happy to hear he caring and thorough. I have been on Cellcept for 9 months and my feet have continued to get worse. I was curious about your skin score. I have never heard about that. Also, what is SCOT?

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MarshaS, the skin score was developed in about 1979 by Gerald P. Rodnan. So it is called the "Rodnan skin score". Rodnan did this by weighing skin biopsies and measuring collagen content.

A modified Rodnan skin score, based on the ability to “pinch” skin into a fold, is now widely used for assessment of skin involvement in scleroderma. In Rodnan skin scoring, the thickness of the skin (by pinch) is tested over various places: face, upper arm, anterior chest, abdomen, forearm hand fingers thigh leg and foot. At each test location, the skin thickening is given a numeric score: 0 (uninvolved), 1 (mild thickening), (2 moderate thickening), or 3 (severe thickening). Then the numbers are added up, I think.

Here is a diagram showing the modified Rodnan skin scoring which you can see on this page: http://www.med.umich.edu/scleroderma/patients/classification.htm

Other methods of skin scoring include:

Durometry - use of a durometer to assess skin hardness
Elastometry - measures elastic skin properties, using a skin torsion device which twists the skin.
Ultrasound - to measure skin thickness

As for SCOT, it's an acronym standing for "Scleroderma: Cyclophosphamide or Transplantation". It is a clinical trial studying which is better, the use of cyclophosphamide alone, or the use of stem cell transplantation. Here's a page that explains it: http://www.sclerodermatrial.org/ . In the left panel of that page is a link to a national map showing the various locations around the U.S. that are helping to run this study, and accepting patients who qualify for inclusion in the study. If you meet their qualifications to be included in the study, they would randomly assign you to either be treated with high dose monthly cyclophosphamide (Cytoxan) or to receive stem cell transplantation. If you wish to participate, you would not have a choice in which they do. That is, unless you opt for the "Star Registry," which you'll see below.

Here are links to clinicaltrial.gov's listings of the clinical trial and it's substudies. http://clinicaltrial.gov/ct2/results?term=SCOT+scleroderma . There are a couple which are currently recruiting. According to this, the main SCOT study (listed last) is active but not currently recruiting. I don't know whether that's really true.

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Thanks DaisyDo for answering MarshaS. I've been so busy and we have a close family member in Jefferson, Phila. with a ruptured brain aneurysm, that it would of taken all weekend to get to MarshaS. I couldn't explain it better than you did. Thanks again.

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I have been seeing Dr. Griffing for 4 years and cannot say enough about his caring and wonderful attitude to the Scleroderma patients that he treats. He is always more than willing to speak at our support group meetings and also agrees with many "alternate treatments and supplements". I am at my 5 year time frame and doing very well and I can attribute this to Dr. Griffing. He may not be the "scleroderma specialist" but in AZ he is the one that knows the most. I also have gone to Northwestern to see Dr. Burt in reference to stem cell replacement with the blessing of Dr. Griffing, since I did not qualify for the SCOT trial. I tell you this because I want you to know that Dr. Griffing only wants what is best for his patients and is willing to support them in anyway he can. He is WONDERFUL!

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Ladies,
Thank you so much for all the wonderful information! I am so looking forward to seeing Dr. Griffing. I will be traveling from Washington State to Scottsdale in October for a week. I have been under the care of a doctor at Virginia Mason, Seattle. Been on Cell Cept for 9 months. My joints and bone pain are so much better, but my feet/ankles are so painful, swollen, tightning and only getting worse. I have never had a skin scoring test nor a biopsy. My doctor diagnosed me through blood work and by looking at me. This is why I am looking forward to a second opinion.

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I live in Mesa so if you need anything while in AZ please let me know.

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Thanks so much CarVal. My sister will be coming with me and we have a good friend that lives in Scottdale who has offered to let us stay with her. I just might email you if we have any spare time!!!

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I had found out about Dr Griffings and was really hoping to see him. BUT being sick for 40+ years left me on disability with an income of $600 a month and Arizona's version of Medicaid. Mayo won't accept patients in my income bracket. I have a bunch of different diagnosis from over the years and really could have benefitted from contact with a good doc. I finally found one down in Tucson (a six hour drive) who can see me in August. Only a 4 month wait. It is frustrating. Especially since I am being actively a part of my care and treatment. I hope the new rheumy is good. I fired the last one who only did knee replacements for welfare cases... The guy was awful!

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