Intro and question

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mimij
New Member


Date Joined May 2015
Total Posts : 3
   Posted 5/21/2015 2:21 PM (GMT -6)   
Hi, newbie here. I have just recently be given a dx of Sjogren's Syndrome (based on bloodwork; positive for SSa antibodies though doc doesn't seem to have a lot of experience with autoimmune disorders). Based on my symptoms, I believe that the Sjogren's is secondary to SLE as some of my symptoms more closely match those of SLE (severe sun sensitivity including rashes as one example). I have had a laundry list of symptoms for the past 20 years but wasn't taken seriously until I had a positive ANA recently.

I live near Philly and just made an appointment with one of Penn's rheumatologists who specializes in Sjogren's. In your opinion, should I see the Sjogren's specialist or would I be better off seeing a doc there who specializes in SLE?

Thanks in advance for any advice. I'm hoping to finally get some answers and some relief.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/21/2015 2:55 PM (GMT -6)   
I would make sure to see a rheumatologist! <wink!> Any good rheumy should be able to treat both/either, and the treatments overlap in many ways.

I personally would lean toward one who is really familiar with Lupus (SLE) over one who is only interested in Sjogren's. (I have both.)

If you'll give us your symptom list maybe we can help you choose based on what is bothering you most.

Best wishes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

mimij
New Member


Date Joined May 2015
Total Posts : 3
   Posted 5/21/2015 3:02 PM (GMT -6)   
Thanks for your response! I actually did see a local rheumatologist who dx the Sjogren's. It seems she see mostly elderly patients with arthritis. My most common and bothersome symptoms are joint paint (mostly hip, hands and knees), fatigue, sun sensitivity (needed steroid cream for rash that developed and lingered for months), chest pain, nose and mouth sores, fever blisters, jaw/cheek pain, frequent headaches, sensitivity to both heat and cold.

8 years ago, I made the mistake of using a tanning bed for 4 sessions. Nearly immediately following, I felt worse than I ever have, I had a really heavy period that lasted for over a month. 3 months later I suffered a brain aneurysm rupture. I don't know that there is any causal relationship but it seems very coincidental. I was also under a lot of emotional stress at that time as my daughter was graduating high school and going away to college.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 5/21/2015 3:32 PM (GMT -6)   
I'm assuming the "Sjogren's specialist" you are scheduled to see is a rheumatologist, if not I would be wary.

Your symptoms seem a little more on the Lupus side to me - Sjogren's generally is first diagnosed with dry membranes - dry eyes, dry nose, dry mouth, that sort of thing. (I have dry ears!) But like I say, any good rheumy who is into auto-immune disorders (rather than age-related arthritis) should be able to treat both.

Tanning beds & stress can both be triggers for activating Lupus -- doubt the brain aneurysm was part of things but who knows.

Let us know who it goes!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Sarah2014
Regular Member


Date Joined Oct 2014
Total Posts : 27
   Posted 5/21/2015 9:14 PM (GMT -6)   
I would say rheumatologist that specializes in SLE too....Dr. Schulz is excellent at Penn....your symptoms sound like SLE...but he can treat you for both...all the best to you

mimij
New Member


Date Joined May 2015
Total Posts : 3
   Posted 5/22/2015 7:02 AM (GMT -6)   
@Lynnwood, for sure he's a rheumatologist at Penn's Sjogren's Center so no worries there! Definitely wouldn't consider going to anyone "shady" :) Thanks so much for your input! You seem very knowledgeable so I may need to "pick your brain" again.

@Sarah2014, thanks for the recommendation! Do you see Dr. Schulz?

I think I will call and change my appointment to one of the rheumys with SLE expertise.

Sarah2014
Regular Member


Date Joined Oct 2014
Total Posts : 27
   Posted 5/22/2015 5:11 PM (GMT -6)   
I do...he specializes in Lupus...he is awesome doctor...great at explaining...very caring
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, June 19, 2018 8:22 PM (GMT -6)
There are a total of 2,973,438 posts in 326,099 threads.
View Active Threads


Who's Online
This forum has 160981 registered members. Please welcome our newest member, chloemartin.
484 Guest(s), 9 Registered Member(s) are currently online.  Details
dinkydonuts, eyesRopen, Lapis_29, TSGlassman, everseeking, Pratoman, RAbid, OriolCarol, U.C.Me?