Back from Philly

Thank you so very much to everyone that has emailed, tweeted, messaged, prayed for and thought about me as I went to Philly to see a Sjogren’s specialist after my non-satisfying experiences with local doctors.

The experience was definitely worth the time and expense of the trip!  He was a wonderful doctor – thorough, asked many questions but believed my answers to them rather than writing them off as incorrect.  He paraphrased information back to me to make sure he had it correct in his notes before making decisions and sharing with me.  He appreciated that I’d brought not only my medical records with me but also a summary of my symptoms and timeline of all that’s happened relevant to my Sjogren’s (I’ll share those in a future post – people have asked to see them or use them as templates for their own use).  He didn’t feel the need to do a lip biopsy as I’m sero-positive for the Sjogren’s anti-bodies and have objective evidence of both dry mouth and dry eyes – he felt the biopsy would be unnecessary int his instance and I agree (and I wasn’t looking forward to that as I’ve heard it’s painful).  He spent over an hour with me, plus I was there a little longer for salivation rate test and lab work.  I never felt rushed or like I was wasting time waiting around.  He was very clear in his instructions, made sure that I had paper and a clipboard to take notes and asked me several times if I had any questions.  He went over it all again as he was entering the instructions, lab orders and prescriptions into the computer.  Overall, the experience was wonderful!

As for treatment:

(1) He’s putting me on a two-week high dose of prednisone with a quick taper.  I should feel really great for those two weeks and then all the symptoms will likely come rushing back afterwards.  We can treat long term with the steroid but it will give us a chance to evaluate which symptoms are due to uncontrolled inflammation and which aren’t.  Amazing that none of the other 3 doctors ever did this.  I completely agree that it’s not ever a long-term solution but as a diagnostic tool I’m all for it.  I’m to let them know which symptoms went away and which came back after the taper after the two weeks.

(2) I was switched from pilocarpine to evoxac as it will allow me to take fewer pills with perhaps a better outcome in helping dry mouth (the pills have a longer half-life).

(3) He asked me to try Refresh Celluvisc eye gel during the day, Genteal Eye Gel for nighttime use and PRN brand Dry Eye Omega to help relieve dry eyes and have my dry eye testing re-evaluated by my ophthalmologist to see if it’s helping after a while.

(4) He kept me on a maintenance dose of hydroxychloroquine (it helps prevent organ involvement but that alone has been the only treatment I’ve been on from the last two rheumatologists and it clearly was not managing the disease or my symptoms!).

(5) He prescriped Imuran – an immunosupressant that can help with central nervous system involvement of Sjogren’s.  He’s hoping this will help with my motor control issues and with the disease overall.

(6) He prescribed a gentle NSAID that I can take for my hand pain (arthritis-type pain) that I can take daily if needed but also just as needed for pain if I don’t need it every day (now I do, but hopefully someday I wouldn’t).

I’m going back in mid-April to have a salivary gland scan to see if there is damage done that won’t be fixable with treatment and then to meet with him again the same day to update on my progress and see where to go from there.

Over all, well worth it!

If you have the means, time off from work and the ability to travel, I highly recommend seeking out the doctors that are true specialists in your specific disease rather than general rheumatologists.  He works with this all day, every day.  He’s a leader in research, has sat on the board of the Sjogren’s Syndrome Foundation, participates in patient education and awareness events.  He’s definitely not a doctor that is going to brush off symptoms and manifestations saying that he “wished [he] got as much sleep” as I do (as Dr. C said to me at the end when I indicated that staying with the same treatment wasn’t acceptable due to my fatigue – right before he wrote in my medical record that the fatigue was likely due to depression without conducting any type of screening or assessment for it).

So thank you for your kind words, prayers and thoughts…I’m still cautious about my optimism, but optimistic none the less! 🙂

2 thoughts on “Back from Philly

  1. Hi Kelly, I am so glad you went to Philadelphia for an evaluation by a Sjogren’s Specialist. I recently also went to PA to the Sjogrens Center at the University of Penn. it was a reaffirmation for me since I have liver involvement and am taking med’s for PBC. My husband is a general internist and has monitored all of my specialist care the last 4 years. It is so important to be comfortable with your specialist and the treatment plan implemented. Have a Happy Holiday Season!!

  2. I’m really glad that this visit went well for you and that you are off to a good start with this doctor. Sometimes it’s worth going the distance to find a good one. really like the Genteal gel drops, but they can be hard to find. I’m currently on two prescription drops – Alrex and Lotemax.

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