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.

@redhead63

Hi:
Who was the Doctor that said “don’t worry about Sjögrens?
Was it at the Mayo Clinic? Thanks.
I have Sjögrens too and it affected my ear and now my kidney. I do not take any meds. for Sjögrens only lots of water

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What did it do to your kidney?

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@sarcomasurvivor – I just noticed that I had not answered your question! So sorry.
What kind of GI problems do you have now for 4 years? You must have gone through awful chemo!
I’m not quite sure what the term is for my condition. Basically, patchy areas of autoimmune inflammation in the entire GI tract. On and off more or less active. My symptoms included constant bloating, at times looking very pregnant, pain/ discomfort 24/7, diarrhea, constipation, fatigue/ at times extreme.
I was seen at Mayo. I had a few endoscopes and colonoscopies as well as MRIs and CT scans. There was always some inflammation upper or lower, not consistent to pin it down. 5 years ago it was suggested I had this very rare condition triggered by chemo years ago. Immunosuppressive treatment worked. I hope you get this a couple of months late!

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@astaingegerdm

@sarcomasurvivor – I just noticed that I had not answered your question! So sorry.
What kind of GI problems do you have now for 4 years? You must have gone through awful chemo!
I’m not quite sure what the term is for my condition. Basically, patchy areas of autoimmune inflammation in the entire GI tract. On and off more or less active. My symptoms included constant bloating, at times looking very pregnant, pain/ discomfort 24/7, diarrhea, constipation, fatigue/ at times extreme.
I was seen at Mayo. I had a few endoscopes and colonoscopies as well as MRIs and CT scans. There was always some inflammation upper or lower, not consistent to pin it down. 5 years ago it was suggested I had this very rare condition triggered by chemo years ago. Immunosuppressive treatment worked. I hope you get this a couple of months late!

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What doctor did you see at Mayo? Trying to get an answer for similar symptoms 11 years post chemo. Have visited Mayo multiple times trying to get an answer.

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I have been dx with Sjogren's quite a while ago. I have joint pain but I can deal with it. I have pretty severe dry mouth and dry which I am being treated for. I have recently finished cancer treatment for triple negative. How does Sjogren's impact on cancer? It will be 2 years in December and I have some neuropathy and bladder issues. I have had 2 cystoscopies & biopsy all negative. I do have bladder wall thickening. I am wondering if the dryness is also a component of the Sjogren's.

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@lucillem72

I have been dx with Sjogren's quite a while ago. I have joint pain but I can deal with it. I have pretty severe dry mouth and dry which I am being treated for. I have recently finished cancer treatment for triple negative. How does Sjogren's impact on cancer? It will be 2 years in December and I have some neuropathy and bladder issues. I have had 2 cystoscopies & biopsy all negative. I do have bladder wall thickening. I am wondering if the dryness is also a component of the Sjogren's.

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Good morning @lucillem72 You’ve asked a very interesting question. I’ve often wondered myself. This article from US News and World Report talks about the connection between the two. So much information!

https://health.usnews.com/conditions/autoimmune-disease/articles/connections-between-autoimmune-diseases-and-cancer I

Are you worried about cancer? Do you have symptoms?

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@becsbuddy

Good morning @lucillem72 You’ve asked a very interesting question. I’ve often wondered myself. This article from US News and World Report talks about the connection between the two. So much information!

https://health.usnews.com/conditions/autoimmune-disease/articles/connections-between-autoimmune-diseases-and-cancer I

Are you worried about cancer? Do you have symptoms?

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I have already done Cancer 2x. The 2nd time was very different. I was diagnosed with triple negative. I did the adriamycin and cytocin, taxol and capcitabine. I lost over 50 lbs and wound up hemmoragic cytstis. They tell me it's the Chemo that gave me the cyctitis due to cytocin. I have since been dx'd with a thickened bladder wall. I have had 2 cystoscopies and biopsies no cancer. I have very dry mouth and eyes so I wondered if Sjogren's can lead to a very dry vagina?

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@lucillem72

I have already done Cancer 2x. The 2nd time was very different. I was diagnosed with triple negative. I did the adriamycin and cytocin, taxol and capcitabine. I lost over 50 lbs and wound up hemmoragic cytstis. They tell me it's the Chemo that gave me the cyctitis due to cytocin. I have since been dx'd with a thickened bladder wall. I have had 2 cystoscopies and biopsies no cancer. I have very dry mouth and eyes so I wondered if Sjogren's can lead to a very dry vagina?

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@lucillem72 I have dry eyes and dry mouth but often wondered if you can get a dry vagina also . this article Becky gave was interesting . If the dryness effects our mucus membrane why not ?

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I am going to read it. This has been on my mind even before Cancer. Probably after menopause caused by my 1st Cancer Run.

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@lucillem72

I have already done Cancer 2x. The 2nd time was very different. I was diagnosed with triple negative. I did the adriamycin and cytocin, taxol and capcitabine. I lost over 50 lbs and wound up hemmoragic cytstis. They tell me it's the Chemo that gave me the cyctitis due to cytocin. I have since been dx'd with a thickened bladder wall. I have had 2 cystoscopies and biopsies no cancer. I have very dry mouth and eyes so I wondered if Sjogren's can lead to a very dry vagina?

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@lioness and @lucillem72 You both we’re asking about a dry vagina! Well, I just saw a urologist last week, and she said the dryness goes along with aging. If it becomes a problem, you can see your doctor and they may prescribe an estrogen cream. Does that help?

Liked by lioness

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I do have an estrogen suppositories. I worry die to the fact I had estrogen receptive cancer but I thank you for the suggestion.

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@lucillem72 – Dry vagina is due to menopause. I had breast cancer at 48 – back then it was only double negative, triple wasn’t in the vocabulary. During chemo I went straight into menopause. My oncologist advised me not to use estrogen creams. There are other products that help.

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I am very similar to yours only I was 56. But that was my 1st bout wit cancer. That one was only estrogen receptive. This one was much more intense for treatment.Thank you for your reply.

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