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Has anyone gone to university of Pennl sjogrens center ?

Started by Steve, January 31, 2016, 04:33:00 PM

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Steve

I have an appt at the end of March and wandering what the 1st appt is .
Sjogrens,polyneurapathy,asthma,sleep apnea,cervical ,spondylosis,fibro ,cad. Cymbalta 20mg ,Plaquenil 400 mg , cellcept 3000 mg , prednisone 5 mg on a 12 day taper , ropinirol 4 mg , isosorbide 30 mg ,atorvastatain 40 mg , pantaprozel 40 mg,plavex 75 mg,pilocarpine 10 mg,advair 500/125,aspirin 81 mg

quietdynamics

Hello Steve, I am being treated at the Penn Sjögren's Syndrome Center since June 14'
http://www.pennmedicine.org/rheumatology/patient-care/clinical-programs/sjogrens-syndrome/

Previously and currently, treated by Chief of Rheum at a teaching institution.

The appointment/exam @ Penn was more specific than any I had prior. And the information provided was beyond the scope of the questions I had brought with me. Sjogrens is what they do: The mission.

If you have not forwarded the lip biopsy .. of course you want to bring.
When you made the appt. you were likely registered with MyPennMedicine. I send labs from LabCorp using this, but have learned to take copies to appts.. as there can be lag times.
My experience was that conditions/symptoms were noted beyond labs.
I was informed of some for the first time in years.. and so, some dots were connected for me (which I had not considered).
I subsequently shared this information with treating neurologist and initial rhuem (who shared with residents/teaching hospital).

Last fall we attended the Sjogrens Foundation Luncheon/ presenter, Dr. Vivino .. and the lecture was outstanding. It was amazing to me to be in a banquet room full of like-type patients and their families.

If you are having someone drive in with you, have them drop you off at the main door. Parking in under new building and get parking stamped by concierge for discount. If Dr. wants Labs it can be done in same building and I have had scripts filled @ pharma in lobby.  There is usually some traffic on highways/construction, so give extra time.

Penn is doing a study currently... more in the area of biomarkers.
It does require a lip biopsy.. so not sure if you could provide sample you had done to them?
You can ask about that?

Wishing you the best.

Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Steve

Thanks for the info ,I'll start getting things together.
Sjogrens,polyneurapathy,asthma,sleep apnea,cervical ,spondylosis,fibro ,cad. Cymbalta 20mg ,Plaquenil 400 mg , cellcept 3000 mg , prednisone 5 mg on a 12 day taper , ropinirol 4 mg , isosorbide 30 mg ,atorvastatain 40 mg , pantaprozel 40 mg,plavex 75 mg,pilocarpine 10 mg,advair 500/125,aspirin 81 mg