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Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I'm in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

lioness | @lioness | Nov 25, 2018
In reply to @kimber3429 "So far not yet. I have just recently found out about it. My case is being..." + (show)
@kimber3429

So far not yet. I have just recently found out about it. My case is being reviewed by a Harvard Dr. That specializes in SS. Just to confirm my Diagnosis. It showed up in my bloodwork. I thought it was more Lupus. But my SS is primary. I had to be off work for a few months. The fatigue severly deteriorated my quality of look life. I have really severe brain fog to the point i can hardly create sentences, talk or comprhend anything. Which i do technical support over the phone for a living. Which ive been at my job 6 years. It has me questioning if i can even continue work with the amount of mistakes ive been making. Its been devestating. I am on Plaquenil now and prednisone. Which really helped the first fee months. Im ferling the effects of brain fog really bad again along with severe aches and pains. After having a non stop flare up for 6 months i thought i was starting to make progress but now i feel like one step forward, 2 steps back. The medication they gave me for the prolactinoma was toxic to my body. So my options are now limited there. I do see a rheumatologist, which i am not sure what he specializes in. This will be my 3rd visiit coming up. My eyes were swelling shut everyday for months and i couldnt get any Drs to listen. Its been a frustrating experience

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@kimber3429 A rheumatologist specialty is in muscles,Joints and bones.I go to mine ,she diagnosed my fibromyalgia.I wish you success ,you may have to see other,s also but the Harvard Dr may find the problem I hope so.

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kimber3429 | @kimber3429 | Nov 25, 2018
In reply to @lioness "@kimber3429 A rheumatologist specialty is in muscles,Joints and bones.I go to mine ,she diagnosed my fibromyalgia.I..." + (show)
@lioness

@kimber3429 A rheumatologist specialty is in muscles,Joints and bones.I go to mine ,she diagnosed my fibromyalgia.I wish you success ,you may have to see other,s also but the Harvard Dr may find the problem I hope so.

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They also specialize in sjrogens & lupus. The harvard Dr id a rheumatogist and he specializes in sjrogens. He has over 35 years experience. Im pretty confident it is sjrogens it doesnt hurt to double check. Ive had 7 crowns this year.i never heard of it prior. My ssb Ro was 53 my ssb La was only 1.

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zenk | @zenk | Nov 27, 2018

Hi Kim, A Rheumatologist is your best bet for providing the best treatment for you. I was prescribed Methotrexate many years ago for severe sjogrens with gland swelling and joint pain . It helped a lot and I continued to take it for 10 years . The Rheum will know the best treatment for your particular symptoms. Best of luck, Zenk

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donnass | @donnass | Jan 26, 2019

I live in New Orleans, obviously very humid. Moved here a year ago. I live alone except for my dogs. I have had severe arthritis for most of my adult life. There is a theory that burning mouth syndrome and arthritis are related - both autoimmune diseases. Under Sjogren’s syndrome. ( pronounced ‘shogrins’).

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Leonard | @jakedduck1 | Jan 26, 2019
In reply to @donnass "I live in New Orleans, obviously very humid. Moved here a year ago. I live alone..." + (show)
@donnass

I live in New Orleans, obviously very humid. Moved here a year ago. I live alone except for my dogs. I have had severe arthritis for most of my adult life. There is a theory that burning mouth syndrome and arthritis are related - both autoimmune diseases. Under Sjogren’s syndrome. ( pronounced ‘shogrins’).

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@donnass
Hi
That’s an understatement if there ever was one.
I was there at the 1984 Worlds Fair. I can’t count how many times I changed my clothes or how many showers I took.
Jake

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sueleerock | @sueleerock | Jan 30, 2019
In reply to @graveltruck "Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary." + (show)
@graveltruck

Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary.

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I can relate to that. It happens to me all the time too.

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mnmboys13 | @mnmboys13 | Feb 23, 2019

Does anyone have a low white cell count from Sjogren's Syndrome?

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1 reply
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 23, 2019

Welcome to Connect, @mnmboys13.
You may notice that I moved your message and combined it with this existing discussion as I thought it would be beneficial for you to connect with the many members who are discussing Sjogren’s syndrome.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s some informations from Mayo Clinic about Sjogren’s syndrome: https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Could you tell us a little more about yourself? Have you been diagnosed with Sjogrten’s syndrome?

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sueleerock | @sueleerock | Feb 23, 2019

Yes, and it seems as if I'm fighting every day just to stay alive. I have a lot of anger toward doctors, they should have cut the interferon dose in half, they didn't! Less medicine, less money for them, it is truly outrageous what they did to me. First, they give me hep c with unnecessary surgery in 1976, then they give me sjogren's.

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sueleerock | @sueleerock | Feb 23, 2019
In reply to @graveltruck "Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary." + (show)
@graveltruck

Nothing smells right. Sometimes I think I smell electrical smoke, etc. Its scary.

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Wow, so do I. My son thinks I'm crazy.

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