Author Topic: Diagnosing Sjogren's Syndrome: My Introduction  (Read 1187 times)

OldeGrayWolf

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Diagnosing Sjogren's Syndrome: My Introduction
« on: June 03, 2015, 04:09:31 PM »
I came onto this site because I suspect that I now have full-blown Sjogren's and am seeking info. I've just asked my primary doc for referral to a (new) rheum' because the one I've gone to for a long time is far away now that I've moved downstate. It has been several years since I saw one and I do not take any specific medication except thyroid replacement and a beta-blocker for blood pressure. Many medications and food chemicals bother me.  I really dread getting back on the merry-go-round of appointments and testing: Over decades dx'd (loosely in chrono order): Hashimoto's, osteoarthritis, gestational diabetes, fibromyalgia, Lyme disease, undifferentiated (mixed) connective tissue disease, Raynaud's, osteoporosis, anemia, celiac disease, psoriatic arthritis, palmar/plantar psoriasis. Don't recall lab results from years back except ANA 640, RA+, EBV high titer (not all in the same testing or same dates). Apparently the autoimmune 'thing' is big. Started life with intrauterine growth retardation: was carried a full documented ten months but only 5 pounds at birth, 17" long, failed to thrive first six weeks. When a big heat wave struck, I finally began to gain weight and did better.  So after recently having bilateral cataract surgery, have dry eyes. Actually did previously and thought it was allergies. Chronically swollen lymph glands under jaw, sinus issues, and insanely itching skin 'everywhere', etc.  I've been retired from hospital nursing for twenty years, office work for ten, and now am trying to 'stay alive' with writing--a second/third career--but these chronic issues are like dragging an anvil around! I appreciate this particular thread because it has given me a better view of what I may expect in the testing arena. Thanks! :o
« Last Edit: June 03, 2015, 05:16:45 PM by Linda196 »

warmwaters

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Re: Diagnosing Sjogren's Syndrome: My Introduction
« Reply #1 on: June 03, 2015, 08:32:17 PM »
Well... You've certainly hit the autoimmune disorder jackpot.

You've got a lot going on.

 My guess is that the rheumy will do quite a few blood tests to confirm the various diagnosis you have had over the years (i.e. figure there will be a lot of vials of blood collected!).

I think the thing that you might focus on is symptoms and relief. Depending on what's bothering you, such as dry eyes, fatigue, joint pain, muscle pain, your doctor might different approaches.  Give the list of issues you've got, it might be worthwhile to put together a list of the most troubling problems, and talk about what might help.

Typical first approach to Sjogren's is plaquenil and possible an anti-inflammatory such as ibuprofen or mobic. Since you have celiac, I assume you are already addressing the issue of avoiding gluten.


But given the wide rand off issues, I would help the doctor out by describing the things that are cause the most problems for you, and then discuss possible solutions.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Joe S.

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Re: Diagnosing Sjogren's Syndrome: My Introduction
« Reply #2 on: June 03, 2015, 08:50:18 PM »
Welcome. Some of us have posted what meds and supplements we take in our signatues. Before you try anything check for counter indications, side effects, and interactions.

bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
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cari

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Re: Diagnosing Sjogren's Syndrome: My Introduction
« Reply #3 on: June 04, 2015, 06:13:42 AM »
As far as I'm aware, Hashimotos, UDTC, celiac, arthritis and psoriasis are all autoimmune related and the first line of treatment for all those is Hydroxychloroquine (400mg a day).  Steroids are used to manage pain and flares.  You definitely need blood tests to see if the dryness is caused by Lupus.  Autoimmune is where the body is being attached by the immune system and depending on where it's being attacked you have a disease name so skin is psoriasis, thyroid is hashimotos etc   Lupus attacks the organs and is related to Sjogrens and has much of the same symptoms including dryness so I'm afraid it's back on the blood test treadmill.  I'm still on the treadmill so you have my sympathy.

Check this out: http://www.lupus.org/answers/entry/how-does-lupus-affect-my-eyes

I also wanted to say that if you haven't had your ENA done for years that there may be progression or positives where there were negatives before. So it's definitely worth getting all those tests done again and having your symptoms treated.
« Last Edit: June 04, 2015, 10:45:20 AM by cari »