Best Sjogren's Center and Docs???

[man-with-sjogrens]

Hi all--

Diagnosed a year now, and am treating dry eye successfully with Restasis and dry mouth so-so with Evoxac.

But I am increasingly worried about brain fog, dry cough, Reynauds, skin irritations, and other "extraglandular" symptons.

It's incredible, but there is no Sjogren's Center or specialist in NYC (at least that i can find).  Have been on a waiting list to see Dr. Viviano in Philadelphia for 9 months!

Can anyone recommend an excellent center and doctor who specialize in sjs and all its manifestations?  Hopkins in Baltimore, I hear is good.

I am increasingly thinking Plaquenil might halt or slow the progression of this disease -- but my NY rheumy is not in the least pro-active.

So I want a second opinion from the best I can find.  Fortunately, I have good insurance and can (and am willing to) travel.

Does ANYONE ANYWHERE have a doctor they think is on top of this, and has good patient communications and bedside manner?

Very grateful for any and all replies.

[anita]

The best Sjogren's doctor is Dr. Julius Birnbaum at Hopkins.  Especially if you have any neuro complication.  He works at the Sjogren's Center at the Bayview facility in Baltimore.   Check out the link for detailed information to get seen.  It is a process, but doesn't take 9 months (maybe a couple, though).   

I have seen him for over 2 years and can say without a doubt that he is not only extremely knowledgeable and thorough, but is just a good person to work with as well.  I had been to the best Dallas has to offer as well as The Mayo Clinic...Birnbaum surpasses them both.


Good luck.  If you have any questions about the process after reading over the link, I'd be happy to answer them.

http://www.hopkinsmedicine.org/rheumatology/clinics/sjogrens-center.html

[JannaLee]

Unless someone knows of a good specialist in NY, I have to agree with Anita.  Birnbaum is known as the best for Sjogren's.  I'm hoping to see him someday, but cannot afford it now.

Janna

[man-with-sjogrens]

Thank you very very much.

i read about the process for going to Hopkins  -- sounds like an ordeal (at least for one who suffers from sjogren's fatique).  gather up all records, send them, get your doctor to write a letter, etc.

but will force myself to do it.  if he is the best he is the one i want.

i hope he may have access to promising experimental meds.

regarding Plaquenil:  what exactly does it do?  does it tamp down the immune respons< ?  what is the downside?

[anita]

The process is detailed, but is a "one time thing".  Once you get the records gathered and in to be reviewed (which is the most time consuming part), the rest is easy. 

The most important records to send are, of course, labs, schirmmer's test, lip biopsy, emg's, skin biopsy, MRI's, CT's, etc  Whenever you can, get the actual films (CD's) for MRI's or CT's that have pertinent findings.  They will be reread by specialized radiologist.  Same goes for biopsies...actual tissue slides are best so they can be re-evaluated...however ask about sending reports first and hand carrying slides and /or films (CD's) at the first visit.  It may all seem redundant, but provides them the basis for solid documentation.

Plaquenil is a slow acting drug to helps to reduce inflammation and slow progression of some AI diseases.  It also seems to help with the fatigue...but I don't find that it eliminates it by any stretch of the imagination.  There is a technical explanation of the drugs action on wikipedia under:  Hydroxychloroquine.   The down side is that it takes a while (a couple months min.) to work.  You also may have some early stomach upset, but I found it to resolve quickly.  Get your eyes checked regularly by an ophthalmologist for a "rare" damaging side effect.

Birnbaum is very thorough and will call you direct with any results or treatment plan changes (so likewise very personable).  He's also up on the latest in treatments.  Keep us posted on your progress with getting in to see him...and of course how the appt goes once you succeeded.

[shaz]

For any of you around Washington dc you should also consider the sjogrens clinic at the national insitutes of health in Bethesda, MD. They are really fantastic and do a great work up. You register with them as an observational research trial. Basically looking at the natural history of the disease. They check everything. They sent me for CT scans to make sure that my swelling isn't lymphoma. They also discovered my hypothyroidism, and checked that I wasn't celiac. I couldn't recommend them enough. I don't think you need insurance as it's NIH but they will let you know that.

Sharon

[Suzy]

Coincidentally, I've been doing some research online today for MY city (Atlanta) since I found out the doc I want to see at Emory is not accepting new patients and does not have a waiting list. I found this list of the top rheumatology hospitals on US News and World Report: http://health.usnews.com/best-hospitals/rankings/rheumatology. It looks like the #3 hospital is in NY.

[man-with-sjogrens]

thank you, all my sjogren's pals.

very helpful information on hopkins, plaquenil, and nyc hospital rankings.  i'm still thinking of hopkins because i don't think the one in nyc has a major sjs expert.

let me know if i am wrong


thnx!

[Suzy]

If you can get to Hopkins I would go there! And please keep us posted on how it goes.

[JannaLee]

Yes, let us know how it goes!

Thinking of you,
Janna

[mari09]

Thanks for posting your question and to all who have offered replies as well!

I moved to the Baltimore area a little over 2 years ago for grad school and was just recently diagnosed. I am sad to learn that there are no known specialists/experts in the NYC area as I am hoping to return to the area upon completing my academic program here.   In the meantime, I too am hoping to be seen at the Sjogren's Center at Hopkins and am just starting to gather up all the information (e.g., labs, etc). I am currently under the care of really good rheumatologist here in Baltimore but feel I may benefit from meeting with a specialist in this area.

MWS, def keep us posted regarding your progress with Hopkins.  I also will be curious as to what you decide regarding plaquenil.  My rheumy recommended I not take it for the time being given that my symptoms are still somewhat ?tolerable?.  However, I am feeling quite unsettled about not doing something proactively to prevent my symptoms from worsening. 

Take care,
Mari

[dbaratta]

Hi.  I'm also a big fan of Dr. Birnbaum - very thorough, very involved and very nice.  I've been going there (from NJ shore) for a year.  Have neuro complications and always feel better after I'm there - always get some answers.  We are planning on moving out of NJ and to IN (friends and family) but I guess I will make a trek there.  I have some really GREAT doctors including Dr. Birnbaum, Dr. Vivino and some others (after going through many).  You really need to find the "right fit" doctors -- heaven knows we spend more time there then doing other things.  I know the initial visit (with all the records, films, etc., but it is all worth it.  Keep on pushing and keep me posted too.  Diane

[Pegasus47]

Hi MWS:

Too bad you live in the East Coast. 

I have a very good immunologist from Stanford- Carole Kemper who practices out of Camino Medical Group.  She is very patient, thorough, and very interested in solving difficult cases, the more difficult, the more she helps. 

Good luck!
Pegasus

[JourneyGirl]

Hi, Recently Diagnosed.  Looking for a good Neurologist that can determine if I have Neuropathy, (burning hands, body in random places, some vibrations in fingers too), location Central, NJ.
I am going to NYU, Dr. J. Samuels- Rhuemy, in June for my first visit, I was told he has experience with Sjogrens. 
I may venture to Hopkins in the future.

[quietdynamics]

Not sure if things are still the same
When I was about to collect medical records (pre- internet acess), I found the cost/page was exorbitant). I learned that request from Drs. were at no charge. So I would find out for PennMed or Hopkins how to have records faxed to specialists. Actually, I learned this when perusing disability, the attorney/advocate subpoenaed records so that I would not be out of pocket per page.  From that point I had my copies.

Dr. Vivino, PennMed.. you can be placed on cancellation list.
I got very lucky.. spoke on phone and got call back same day for cancellation the next day.

Hopkins Medical History form: https://www.hopkinssjogrens.org/wp-content/uploads/2009/12/Patient-History-Form.pdf

Here is list of Sjogrens Support Contacts NY. https://www.sjogrens.org/home/get-connected/support-groups/us-support-groups/newyork

Here is information for Columbia University Medical/ Rheum (you could send a letter of inquiry specific to your presenting symptoms) https://www.columbiadoctors.org/rheumatology

*JourneyGirl.. DH recently had cardio issues attended. Nurse shared that regarding Neuro Robert Woods Johnson is top tier.