← Return to Sjogren’s Syndrome – Introduce yourself and meet others

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@colleenyoung

Welcome to Connect @cmtg. You have landed in the right place. I’d like to introduce you to a few other members who also have Sjogren’s. Please meet @johnwburns @blindeyepug @meemer @kyjeanne @uncbball and @ccorrconro for a start. I’m confident others with join this discussion too. I also encourage you to browse the other discussions in the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/

CMTG – why type of pain do you experience and what methods or treatment do you use to try to manage it?

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Replies to "Welcome to Connect @cmtg. You have landed in the right place. I'd like to introduce you..."

Recently diagnosed with sjogrens after 7 years almost. Started out with abdominal pain then dry eyes, dry mouth, sores in mouth that might be related to my lichen planus , joint pain all over, ear ache,.not sure if ear has any relationship. Recently a dr prescribed plaquenel will be on that soon.

Plaquenil is usually a pretty safe drug to take but if you notice any major changes, report them.
Sjogren’s has been known to cause ear issues. Its a systemic illness so it could technically cause or exacerbate a lot of things.

There are more details around but here’s a high level overview.
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Hope this helps.

I was diagnosed with a salivary gland lip biopsy about 10 years ago. I take cervimeline for my sjogren’s. Also use biotene toothpaste, mouth wash and mouth spray. Keep water with me constantly. I also have RA. Was on plaquenil for a long time and it helped, but then it started affecting my eye sight. Be sure to have an eye exam to look for damage every six months if you take the plaquenil. I no longer take it. But it is rare to have the eye sight side affect. Praying all goes well with you.

I’ve had nausea this week wondering if this is from sjogrens or Tylenol I take for my ear ache.

I was diagnosed in 2010 but now recognize I have had Sjogren’s since childhood. I hurt so bad ever day. Right now it is my lower back and both hip joints. Also, does anyone else find their sense of smell is weird?

I totally lost my hearing in my left ear overnight. Doctors said the MRI showed those hairs in the cochlear had died….

My sense of smell has definitely been affected. I can’t smell as well, but sometimes it is worse than others. For example, many times I can’t even smell a dead skunk on the road, while my husband really complains. So, it is sometimes a blessing! 🙂

Hello @graveltruck,
Welcome to Connect. Although Sjogren’s has been known to cause ear issues, it must have been awful to lose your hearing! I’m so sorry.
There are many members here who have had similar experiences with Sjogren’s syndrome. Please meet @marylou705, @kyjeanne, and @cmtg; I’m confident they will be able to give you some information.

@graveltruck, can you tell us a bit more about how you were diagnosed? Have your doctors mentioned anything as to how and why your sense of smell may be affected, and are you on a treatment plan?

I lost my hearing overnight. The specialists called it something like Sudden Sensorial Hearing Loss. All 3 said they see 2-3 patients a year with it. Some regain part or all of their hearing. Not me. Stone deaf. However, I thank God it is silent. No roar or any noise.

I have taken thyroid medication for 30 years and prilosec for probably 10.

The Mayo Clinic diagnosed me thru blood tests.

I went to a rheumotologist but he said Sjogren’s was nothing to be concerned about…….. My primary doctor takes better care of me.

My doctors do not offer me any helpful solutions other than what we all read about stuff for the dry eyes and mouth. I have found that taking 3 Flax Seed Caps a day keeps my eyes moist. The only thing that is helping my throat are Halls Honey Cough Drops. I keep Avon Care Deeply lip stuff on my lips which does help until it wears off.

I am not willing to take any of the drugs. I personally think the side effects are too dangerous. Just my opinon for me. I do not fault anyone for whatever works for them.

Fortunately, I have primary Sjogren’s. I see where there are 3 stages of it and later I may develop Lupus in addition to it attacking my pancreas, liver and kidneys.

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

Hi @graveltruck,

Have you considered a cochlear implant? I thought I’d pass on some information from Mayo Clinic, that I was able to find:
http://mayocl.in/2fn2TZo
Do go to the ‘Expert Answers’ tab, as you will find a lot of information on this procedure.

I would also encourage you to connect with @ladyjane85. and @reneewise50, who seem to have found some solution for dry eyes.
Hope this helps.

I was not one who had anything re: dry eyes,,,…@ladyjane85

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