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.

@sueleerock

Yes, currently. First, my ear wax disappears for 8 yrs. From the interferon, it returns with a terrible earache I've had for a month now.

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It sounds like infection so see a doctor. My ears are dry and I have tinnitus.

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@lioness

@peach414144 I have was just thinking of you and wondering how you are glad your still here good to hear from you It's to bad this is how we do. I have sjorans also but am thankful I just have dry eyes and mouth .I use Biotene it helps me .I do have M.D. and glucoma my eyes water for no reason.I put drops in 4-5 times a day After reading how bad it can get I feel blessed its just my eyes and mouth Bless us all.

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Use fish oil daily. I take 2 or 3 large pills. Your eye doctor should have mentioned that with liquids and eye drops. A humidifier at night helps.

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@peach414144

@ Yes, I have psjogrems and other autoimmune diseases. No teeth, dry eyes, gloucoma, etc., etc., etc. It gets very bad. Somehow I am still here but it gets harder but so far I am still here.

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I have little sore knots on a few fingers and gout sometimes on my toes. Stay away from to much acidic foods O.J. or pineapple and ask for prednisone. Do not stay on prednisone it put weight on you.

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@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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Look up social security disability for the description criteria on sjogren's. Gather every document from your doctors and see a lawyer (Morgan and Morgan) That is how I got my disability.

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@jmb73

I have had temporary plugs put in and they really helped. My Dr. didn't want to put the permanent ones in as he was concerned about having to take them out. He has replaced them a few times but they are wonderful. I was using drops every 15 minutes and now I can go for hours without using drops!

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Ask for lacracerts to put in your eyes.

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@marylou705

I have Sjogrens too and I was getting a chest scan frequently from m.y Cardiologist.  He kept spotting something in my right lung and we thought it was the Sjogrens but this time I got a shock.  It was lung cancer so I had a lobe removed in May.  Add to that I had a stroke in January and I now have an infection on my liver!  I am only saying this is possible, but rare.  I also have itchy ankles.  Primary problem is Psoriatic Arthritis.  Have you tried an OTC cortisone ointment on your itch?  @marylou705

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Check your liver it causes itching I believe. Look Youtube for some home remedy like baking soda.

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@tigerlilly

Ask your dentist and look up Mayo Clinic. Saliva keeps you mouth clear of bacteria and cavities.

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@tigerlily never heard of saliva where do you get it?

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@powerofpositive

Use glasses…the Jackie O type if your outside and it is breezy/windy…really helps cut down on the drying effects of the blowing air…also inside if near a air handeling unit. I have been using a honey based drop as the others also have scarey side affects longterm. So far so good. Helps to stay really hydrated. Drink lots of water and other fluids., down side is alot of bathroom visits, but I notice a big difference if I don’t. I am trying my best not to use DMARS and so far so good.
How severe is your Sjogrens? Some times it pays to slow down and not just react to a “diagnosis”. Now that you know what “it” is research on line, get a second opinion..investigate alternative remedies, the more we know the better choices we can make for ourselves. We are fortunate to have access to medications, but they often come at a price or create other health issues….as side effects. But make informed choices and good luck.

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@savant . I have horrible dry eyes . I was using drops 4-5 times a day then a new Systane came out its Systane Complete , It really is good I only use the drops 3 times a day . ALso a humidifier in hot weather helps Those are some more suggestions

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@rarelybees2889

Hi
Anyone here have Sjogrens Syndrome? I have had some pretty weird and unusual (for SS) complications. Love to interact with others who have autoimmune diseases. I also have Hashimotos,

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Hello @rarelybees2889 — Welcome to Connect. There is another active discussion on Sjogrens where your post will receive more visibility and you can meet other members discussing Sjorgrens. I'm tagging our moderator @ethanmcconkey to see if we can move your discussion here:

> Groups > Autoimmune Diseases > Sjogrens
https://connect.mayoclinic.org/discussion/sjogrens/

You may also want to join the following discussion for Hashimotos:
> Groups > Autoimmune Diseases > Hashimoto's Thyroiditis and IVIG Treatment?
https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/

Are you able to share some of your symptoms and anything you have tried for treating the symptoms?

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Hi
Anyone here have Sjogrens Syndrome? I have had some pretty weird and unusual (for SS) complications. Love to interact with others who have autoimmune diseases. I also have Hashimotos,

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@rarelybees2889

Hi
Anyone here have Sjogrens Syndrome? I have had some pretty weird and unusual (for SS) complications. Love to interact with others who have autoimmune diseases. I also have Hashimotos,

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Hi @rarelybees2889, as @johnbishop suggested I have moved your message to this existing discussion where you can meet other member who have Sjogrens Syndrome, like @lioness @tigerlilly @8j4p2r @peach414144 and @zenk to name a few.
Click VIEW & REPLY and you can read through past posts.

What weird and unusual Sjogrens do you have? Which are most challenging to deal with and how do you manage them?

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@rarelybees2889

Hi
Anyone here have Sjogrens Syndrome? I have had some pretty weird and unusual (for SS) complications. Love to interact with others who have autoimmune diseases. I also have Hashimotos,

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Hi bees, I have experienced muscle weakness over the last few months. I have sjogrens . I do not have any Rheum markers. Wonder if anyone here with Sjogrens has experienced muscle fatique or abnormal nerve conductions studies with their Sjogrens. Thanks Zenk

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