1. < Autoimmune Diseases

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.

adlttl123 | @adlttl123 | Sep 19 2:37pm

I highly recommend that you call Mayo Clinic you might be surprised. Please don’t count them out without talking to them. God bless!🙏🌟

REPLY
deborahyost3 | @deborahyost3 | Sep 20 9:44am
In reply to @di341 "Man, this aging process....... Thank you for taking time to try to help! I have had..." + (show)
@di341

Man, this aging process....... Thank you for taking time to try to help!

I have had a positive ANA for decades and run a higher CRP number, I have for many years. Other than Osteoarthritis, no other autoimmune diseases have been identified. My health is good for the most part at 70.

Last month I had, what I refer to as a "flare". My whole body was in pain for over a week. I went into my PCP who I've had for decades. Once again she ran blood tests looking for clues.

My CRP had jumped from a previous high of 7 mg/L to... 80 mg/L...!!!!!!!!!

The only clue was the test for Sjogren's Ab. My result was Sjogren's Anti-SS-A was.. over 8.0..., normal range being 0.0-0.9. The Anti-SS-B was normal range at less than 0.2.

She is convinced this is enough for a DX of Sjogren's. I know medicine is a process of elimination and I have had severe dry eyes and mouth for years. Do I need further testing or is this convincing?

Jump to this post

This IS your Dx IMHO

Yep! You're a Sjogren's warrior

REPLY
adlttl123 | @adlttl123 | Sep 21 9:28am
In reply to @di341 "Man, this aging process....... Thank you for taking time to try to help! I have had..." + (show)
@di341

Man, this aging process....... Thank you for taking time to try to help!

I have had a positive ANA for decades and run a higher CRP number, I have for many years. Other than Osteoarthritis, no other autoimmune diseases have been identified. My health is good for the most part at 70.

Last month I had, what I refer to as a "flare". My whole body was in pain for over a week. I went into my PCP who I've had for decades. Once again she ran blood tests looking for clues.

My CRP had jumped from a previous high of 7 mg/L to... 80 mg/L...!!!!!!!!!

The only clue was the test for Sjogren's Ab. My result was Sjogren's Anti-SS-A was.. over 8.0..., normal range being 0.0-0.9. The Anti-SS-B was normal range at less than 0.2.

She is convinced this is enough for a DX of Sjogren's. I know medicine is a process of elimination and I have had severe dry eyes and mouth for years. Do I need further testing or is this convincing?

Jump to this post

In my opinion this is absolutely enough. This illness can be so hard to diagnose I would take it and run with it. Thank God you have a doctor aware of Sjogrens. Now it’s time to find a medication that works for you and the good news is for us we have many to chose from. Good luck please keep us posted. We care. Diane.

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hannahbernard1 | @hannahbernard1 | Nov 25 9:04am

Hi everyone. I am curious if there is anyone in this group who was diagnosed with Sjorgens from a young age and how it has affected you. A little about me ... I am 22 now but have been diagnosed with Sjorgens since I was 13. I have always dealt with dry eyes, dry mouth, joint pain, fatigue, and brain fog. In the last few years, I have noticed these symptoms worsening and even dealing with other (new) symptoms that I usually don't experience. At the same time I was diagnosed with Sjorgens, I was also diagnosed with celiac, intolerance to fructose/lactose, ITP, Undifferentiated Connective Tissue Disease, GERD, and a few other health issues that have made it challenging to cater to my Sjorgens. Because of my GERD and past ulcers, I have not been taking medication for any of my health issues, as I tend to vomit them right back up. Recently, I have been debating trying hydroxychloroquine again, as that's what I was taking at the beginning of high school. Does anyone have any issues with digesting medication? What do you do?

REPLY
1 reply
marytillson | @marytillson | Nov 26 10:58am
In reply to @cmtg "I have all the symptoms above you described except never had a lip biopsy, Dr said..." + (show)
@cmtg

I have all the symptoms above you described except never had a lip biopsy, Dr said not needed, the diagnosis is pretty clear. It took seven years for diagnosis. I guess did't make myself clear to you.

Jump to this post

Don’t have the lip biopsy if you don’t need to. It’s painful

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suetex | @suetex | Nov 26 11:17am

Gosh, you really have a hard row to hoe. I don't have anything like that. I came across my diagnosis at a much later age (70s) and I suspect it is very different for us older set. Remember, Sjogren's isn't an invader. It is our own body attacking itself. It is easy to lose sight of that day to day. I am on IvIg which is very expensive but Medicare does pay for most of it . Because of that, my rheummy took me off plaquenil. And I take 5 mg prednison, from my neurologist who is very knowlegable about Sjogren's. (I am low corisol anyway.) I have small fiber neuropathy, often caused by Sjogren's and if I can stop being "clumsy", my life will be better. Good luck to you on your journey. Learn all you can about the immune system. It is hard to guess what will help.

f

REPLY
sbtheplumber1 | @sbtheplumber1 | Nov 27 2:20am
In reply to @hannahbernard1 "Hi everyone. I am curious if there is anyone in this group who was diagnosed with..." + (show)
@hannahbernard1

Hi everyone. I am curious if there is anyone in this group who was diagnosed with Sjorgens from a young age and how it has affected you. A little about me ... I am 22 now but have been diagnosed with Sjorgens since I was 13. I have always dealt with dry eyes, dry mouth, joint pain, fatigue, and brain fog. In the last few years, I have noticed these symptoms worsening and even dealing with other (new) symptoms that I usually don't experience. At the same time I was diagnosed with Sjorgens, I was also diagnosed with celiac, intolerance to fructose/lactose, ITP, Undifferentiated Connective Tissue Disease, GERD, and a few other health issues that have made it challenging to cater to my Sjorgens. Because of my GERD and past ulcers, I have not been taking medication for any of my health issues, as I tend to vomit them right back up. Recently, I have been debating trying hydroxychloroquine again, as that's what I was taking at the beginning of high school. Does anyone have any issues with digesting medication? What do you do?

Jump to this post

@hannahbernard1 Wow that was a young age to find out I was in my early 40’s I went to the dentist and asked about my tongue being white all the time and he said he knew what it was because his wife had Sjogren’s so I had I believe blood test done. Having dry eyes I tore the tissue on my eye, dry sinuses , itchy skin. I just seen the GERD Doctor today I can’t wear my cpap because I wake up choking from the acid, I need esophagus surgery to tighten that sphincter at the bottom of the esophagus. I’ve been taking meds for it since 1998 . Make sure the head of your beds elevated, I was at one time using papaya enzymes from the GNC store which helped until I had a bad spell and the doctor put me back on medicine. For the dry eyes my Optometrist prescribed Miebo it’s an oily eye drop so it helps lubricate and then I use a gel drop at night before bed

REPLY
1 reply
hannahbernard1 | @hannahbernard1 | Nov 27 8:35am
In reply to @sbtheplumber1 "@hannahbernard1 Wow that was a young age to find out I was in my early 40’s..." + (show)
@sbtheplumber1

@hannahbernard1 Wow that was a young age to find out I was in my early 40’s I went to the dentist and asked about my tongue being white all the time and he said he knew what it was because his wife had Sjogren’s so I had I believe blood test done. Having dry eyes I tore the tissue on my eye, dry sinuses , itchy skin. I just seen the GERD Doctor today I can’t wear my cpap because I wake up choking from the acid, I need esophagus surgery to tighten that sphincter at the bottom of the esophagus. I’ve been taking meds for it since 1998 . Make sure the head of your beds elevated, I was at one time using papaya enzymes from the GNC store which helped until I had a bad spell and the doctor put me back on medicine. For the dry eyes my Optometrist prescribed Miebo it’s an oily eye drop so it helps lubricate and then I use a gel drop at night before bed

Jump to this post

Thank you for the reply! I have recently elevated my bed as I was frequently waking up, also choking from the acid! It's very scary; I'm sorry you have also experienced that! Something I have found beneficial for my GERD is Prilosec. You may already take this, but in the morning, before I have breakfast, I take Prilosec, and it seriously changed my life! I went from 160lbs to 80lbs in about seven months because my GERD was so bad. After taking Prilosec religiously for about two months, I have been able to eat and keep everything down! It sounds like we have had some similar experiences, though, as I recently tore the tissue on my eye as well. Doing so is very painful! I will need to try the gel drops you mentioned!!

REPLY
1 reply
sbtheplumber1 | @sbtheplumber1 | Nov 27 10:48am
In reply to @hannahbernard1 "Thank you for the reply! I have recently elevated my bed as I was frequently waking..." + (show)
@hannahbernard1

Thank you for the reply! I have recently elevated my bed as I was frequently waking up, also choking from the acid! It's very scary; I'm sorry you have also experienced that! Something I have found beneficial for my GERD is Prilosec. You may already take this, but in the morning, before I have breakfast, I take Prilosec, and it seriously changed my life! I went from 160lbs to 80lbs in about seven months because my GERD was so bad. After taking Prilosec religiously for about two months, I have been able to eat and keep everything down! It sounds like we have had some similar experiences, though, as I recently tore the tissue on my eye as well. Doing so is very painful! I will need to try the gel drops you mentioned!!

Jump to this post

@hannahbernard1 I was on nexium for years, tried Prilosec, been on Omeprazole in the morning for a couple years and now also take pantroprazole in the evening . Sad part I tore the tissue on my eye the week of my 40th birthday and 2 years later my wife turned 40 and was wrestling my son and his toenail went across the same eye as mine , the eye doctor said that was a first having husband and wife with the same issue. I’m dealing with a failed back surgery and spent 4 months sleeping in a recliner since I went to Mayo Clinic I had to find someway to sleep so I was able to sleep on an air mattress which makes it hard to elevate my head.

REPLY
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