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.

@becsbuddy

@elmay I see that you aren’t a new member. Is the Sjögren’s new for you? I’m going to ask @rarelybees2889 and @zenk and @peach414144 to join the conversation and see what help they can offer. It sounds like having a very dry mouth at night is especially irritating for you. Have you tried any of the artificial salivas from the drug store? Maybe the other members have good suggestions.

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@elmay @becsbuddy – during the years when I had autoimmune gastrointestinal inflammation I started having very dry mouth and eyes. I was tested a couple of times for SS but negative. It was still thought of as a SS autoimmune disease. I would have red bumps inside lips and on palate, tender salivary glands. After finishing my immunosuppressive treatment, the symptoms disappeared.
However, I ended up with enamel damage to my front teeth, they became almost see- through. Anyone else had a problem with the teeth?

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@astaingegerdm

@elmay @becsbuddy – during the years when I had autoimmune gastrointestinal inflammation I started having very dry mouth and eyes. I was tested a couple of times for SS but negative. It was still thought of as a SS autoimmune disease. I would have red bumps inside lips and on palate, tender salivary glands. After finishing my immunosuppressive treatment, the symptoms disappeared.
However, I ended up with enamel damage to my front teeth, they became almost see- through. Anyone else had a problem with the teeth?

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@astaingegerdm Your tooth enamel was damaged by your immunosuppressive treatment? Are they still strong? What does your dentist say? I’ve been on prednisone for 2 years and CellCept and now rituxan. No problems so far. Are you sure medications caused the problem?

Liked by swift

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@astaingegerdm

@elmay @becsbuddy – during the years when I had autoimmune gastrointestinal inflammation I started having very dry mouth and eyes. I was tested a couple of times for SS but negative. It was still thought of as a SS autoimmune disease. I would have red bumps inside lips and on palate, tender salivary glands. After finishing my immunosuppressive treatment, the symptoms disappeared.
However, I ended up with enamel damage to my front teeth, they became almost see- through. Anyone else had a problem with the teeth?

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What is meant by autoimmune gastrointestinal inflammation? How is that diagnosed. I sure have GI issues.

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Thanks for the advice. I think I will talk to my doctor about "my diagnosis".

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@becsbuddy

@astaingegerdm Your tooth enamel was damaged by your immunosuppressive treatment? Are they still strong? What does your dentist say? I’ve been on prednisone for 2 years and CellCept and now rituxan. No problems so far. Are you sure medications caused the problem?

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@becsbuddy – I did not express myself correctly! The dryness of my mouth and little saliva when I had symptoms like Sjogren's caused the enamel to disappear. I got a lot of my teeth capped- now they look beautiful! Fake on the outside.

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@elmay

Thanks for the advice. I think I will talk to my doctor about "my diagnosis".

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@elmay – I had a very rare form of autoimmune GI disease – found that out after years of testing. I started with a known illness- collagenous colitis.With treatment it appeared to go away, but I was feeling miserable most of the time for several years. Biopsies would show random patches of inflammation on and off and in different places. Usually improved on Prednisone and somewhat on Budesonide. Then finally there was an answer – I had severe GI reaction to chemo many years ago- now that was recognized as a trigger for this autoimmune illness. Other conditions that could lead to this are abdominal trauma and gunshot wounds to the abdomen. I then requested to be treated with Imuran – a recommended immunosuppressive. It worked, but side effects of severe infections.

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@astaingegerdm

@elmay – I had a very rare form of autoimmune GI disease – found that out after years of testing. I started with a known illness- collagenous colitis.With treatment it appeared to go away, but I was feeling miserable most of the time for several years. Biopsies would show random patches of inflammation on and off and in different places. Usually improved on Prednisone and somewhat on Budesonide. Then finally there was an answer – I had severe GI reaction to chemo many years ago- now that was recognized as a trigger for this autoimmune illness. Other conditions that could lead to this are abdominal trauma and gunshot wounds to the abdomen. I then requested to be treated with Imuran – a recommended immunosuppressive. It worked, but side effects of severe infections.

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Can I ask what was your diagnosis? Unexplained GI problems for 4 years despite repeated testing…and 10 years after intensive chemo.

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@astaingegerdm

@becsbuddy – I did not express myself correctly! The dryness of my mouth and little saliva when I had symptoms like Sjogren's caused the enamel to disappear. I got a lot of my teeth capped- now they look beautiful! Fake on the outside.

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@astaingegerdm Thank you for clearing up the issue about your teeth! Whew, you had me worried

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@becsbuddy – sorry! Sometimes I’m not synchronizing thinking and writing.

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Hello! I'm Susanne, from Florida, and have been diagnosed with Sjogrens disease for six years. It seems to be a very lonely disease, as it's nearly impossible to receive any medical care for it I'm excited to hear, and learn from others in the site!

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@susanneloss

Hello! I'm Susanne, from Florida, and have been diagnosed with Sjogrens disease for six years. It seems to be a very lonely disease, as it's nearly impossible to receive any medical care for it I'm excited to hear, and learn from others in the site!

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Yes you are correct. I am 82 and am still looking for a doctor who can help. Perhaps this is because there is a small percentage of people who have this disease. So to spend money on research for this disease will not bring in adequate money to compensate for their efforts. ???

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@susanneloss

Hello! I'm Susanne, from Florida, and have been diagnosed with Sjogrens disease for six years. It seems to be a very lonely disease, as it's nearly impossible to receive any medical care for it I'm excited to hear, and learn from others in the site!

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Hi Susanne, I’m from central Florida. I was diagnosed about 2 1/2 years ago. Rheumatologist has me on a small dose of prednisone and hydroxychloroquine. I think it helps the fatigue, but I still need to pace myself and not try to do too much. I can’t say that it has done anything for dry eye. I’m using restasis, but it is really expensive. Good luck and I hope you find the medical care you need.

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@peach414144

Yes you are correct. I am 82 and am still looking for a doctor who can help. Perhaps this is because there is a small percentage of people who have this disease. So to spend money on research for this disease will not bring in adequate money to compensate for their efforts. ???

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@peach414144 – I am so sorry that you really don’t get proper medical help. I find it also depends on where you live- if you have access to rheumatologists with wide experience. Sjogren’s is fairly well known, but not enough physicians are not comfortable dealing with it. It is one of the invisible illnesses. My neighbor has it- I wouldn’t have known by looking at her. Don’t give up looking!

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@astaingegerdm

@peach414144 – I am so sorry that you really don’t get proper medical help. I find it also depends on where you live- if you have access to rheumatologists with wide experience. Sjogren’s is fairly well known, but not enough physicians are not comfortable dealing with it. It is one of the invisible illnesses. My neighbor has it- I wouldn’t have known by looking at her. Don’t give up looking!

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Thank you for caring but I have gone to all of the doctors in my county. They are ill equipped emotionally, mentally in caring or compassion. They seem to be stressed out. There are three rheumatalogist's in my county but then again my county seems to be "slow". Mayo in Jacksonville is the fourth (in a different county). It is more "trying" to continue. I have resigned myself that when I win the LARGE lotto I will go to (hopefully) the best elsewhere. Do not worry I am doing well enough.

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@jlh658

I have had Sjogrens for about 15 years. My kidney function is decreasing and now diagnosed with chronic kidney failure stage 3. Had a biopsy –directly due to the Sjogrens and now am on cellcept 1500 mg a day to keep my immune system from attacking my kidneys even more. Does anyone else have issues with this as well. Thanks

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Hey at one time my mom had thought I had this she works in rhemuotology but I never got tested…..just got diagnosed with ckd stage 3 little over a year ago and my left kidney I am wondering if maybe I do have this and it played a part or maybe I am crazy

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