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 group.

@soberkat11

Hello i can understand what your going through. I also have Sjogren plus R.A..Im in pain a lot..plus im a Amputee b/k. Pain can go away when you think about something else

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Welcome SoberKat! May I ask what led to your needing amputation below the knee?

What help distracts you from pain?

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I have Sjögrens as well as RA. Diagnosed in December 2020. My blood tests were negative for antibodies for both. I had been tested before by my internist, but since I was antibody negative, I was told I didn't have RA. If it wasn't for my eye doctor (treating for Dry Eye and dry mouth) questioning for Sjögrens, I would have never known. He referred me to a rheumatologist. I went to Mayo clinic and was diagnosed by MRI, x-rays and salivary gland scan. Blood testing still showed no antibodies. The rheumatologist said I was considered seronegative for RA well as Sjögrens. I would be interested in the statistics for number of RA patients who are seronegative. I am on methotrexate and Humira but am being switched to Enbrel in place of the Humira.

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@jba

I have Sjögrens as well as RA. Diagnosed in December 2020. My blood tests were negative for antibodies for both. I had been tested before by my internist, but since I was antibody negative, I was told I didn't have RA. If it wasn't for my eye doctor (treating for Dry Eye and dry mouth) questioning for Sjögrens, I would have never known. He referred me to a rheumatologist. I went to Mayo clinic and was diagnosed by MRI, x-rays and salivary gland scan. Blood testing still showed no antibodies. The rheumatologist said I was considered seronegative for RA well as Sjögrens. I would be interested in the statistics for number of RA patients who are seronegative. I am on methotrexate and Humira but am being switched to Enbrel in place of the Humira.

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Your question about the number of patients with RA who are seronegative piqued my interest, @jba. I did a quick Google search and found this interesting information from research that Mayo Clinic did (go figure).

The Number of People with Rheumatoid Arthritis Is Staying Steady, But More People Have the Seronegative Kind https://creakyjoints.org/diagnosis/more-rheumatoid-arthritis-patients-seronegative/
"The percent of people who have rheumatoid arthritis (RA) hasn’t changed much over the past few decades. From 1985 to 1994, about 40 people per 100,000 had it; between 2005 and 2014, that number was 41 out of 100,000. What has changed, however, is the proportion of patients who have the seronegative form of the disease.

This information comes thanks to a new analysis that was conducted by Mayo Clinic researchers and published in the journal Annals of the Rheumatic Diseases. Between 1985 and 1994, only 12 out of 100,000 people with RA were seronegative. Between 2005 and 2014, that number jumped to 20 out of 100,000."

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@rlinstrot

I get plugs in my eyes every 3 months. They wear down & by the next of my next appt they are gone. I thought the plugs would be annoying. In reality I feel them at all.

I was diagnosed with Shogren’s Syndrome last month via a inner lip biopsy. The surgeon said that he could tell when he made the initial incision that I have SS but he would send it to the lab as backup. The lab reports supported the surgeon.

It was a relief to get a diagnosis but frustrating because the treatment isn’t a cure, just a handle of symptoms.

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I have silicone plugs in one set of tear ducts and the other set has been permanently occluded. The silicone plugs do not wear out and can be removed at any time. These procedures have helped me a great deal for the dry eye portion of Sjögrens.

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@colleenyoung

Your question about the number of patients with RA who are seronegative piqued my interest, @jba. I did a quick Google search and found this interesting information from research that Mayo Clinic did (go figure).

The Number of People with Rheumatoid Arthritis Is Staying Steady, But More People Have the Seronegative Kind https://creakyjoints.org/diagnosis/more-rheumatoid-arthritis-patients-seronegative/
"The percent of people who have rheumatoid arthritis (RA) hasn’t changed much over the past few decades. From 1985 to 1994, about 40 people per 100,000 had it; between 2005 and 2014, that number was 41 out of 100,000. What has changed, however, is the proportion of patients who have the seronegative form of the disease.

This information comes thanks to a new analysis that was conducted by Mayo Clinic researchers and published in the journal Annals of the Rheumatic Diseases. Between 1985 and 1994, only 12 out of 100,000 people with RA were seronegative. Between 2005 and 2014, that number jumped to 20 out of 100,000."

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Thank you for this information! I appreciate your picking up on this and replying. 🙂

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@lynnie1954

I commend you for your strength and perseverence. I have not been diagnosed with Sjogrens yet but take Restasis. It is very expensive and would prefer to take Systane. Does Systane help you dry eye alot? Thanks, Lynnie

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Hi Lynnie, I have very dry eyes from a medical condition and what’s helped me the most is Systane Nighttime Ointment. It’s an over the counter med, no prescription.
It’s a thicker gel that gets applied inside the lower eyelid at night right before going to sleep.
It’s made a huge difference in my eyes to the point where i don’t even need eye drops during the day anymore. This lubricant keeps my eyes hydrated.

To apply I pull out my lower lid a little and squirt a strip about 1/2 long inside. Then let the ointment warm up to melt and spread over the eye. It’s a little messy if you get too much, so you’ll want to wipe the excess from the outside of your eye lid before sleeping. It also makes your vision blurry so again, just apply and go to bed. (Blurriness disappears by blinking)

Initially I was disappointed because it wasn’t consistent. Well, I found out I wasn’t consistent. LOL. Now I use it faithfully every night and have been over a year. It’s awesome! So you might want to give it a try.

I’d ask a pharmacist if it can be used with Restasis though.

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@lynnie1954 – No, I didn’t. I realize now that a biopsy would have been appropriate.

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I have gotten the impression from my visits with mostly Mayo specialists and talking to people diagnosed with Sjogren’s, RA and gastrointestinal autoimmune diseases that antibodies and certain ANA titers are not necessarily diagnostic. It seems that a clinical diagnosis also decides what treatment is given.

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@lynnie1954

I commend you for your strength and perseverence. I have not been diagnosed with Sjogrens yet but take Restasis. It is very expensive and would prefer to take Systane. Does Systane help you dry eye alot? Thanks, Lynnie

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Hi Lynnie, Systane Ultra and Genteal gel for severe dry eye really help my dry eye and often there are coupons! Remember, if you use it a lot, alternate with Systane preservative free so you don't get a build up in your eye. Warm compresses help a lot too. I also use OCuSoft lit scrubs to wash my lids twice a day and then I use cosmetic rounds to rinse my lids. Systane runs about $21 for the 2 vial box and Genteal is $9.99. OCuSOFT is $10.99 for 30 wipes and the cosmetic rounds are $1.29 for 100. Maintenance is a pain but it prevents problems. I hope this helped. Joan

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@adlttl123

I also have RA and Sjogrens. Do you mind sharing how you treat the Sjogrens mine is driving me crazy.

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The first line drug for slowing the effects of Sjögren’s is hydroxychloroquine.

I was diagnosed through blood tests in Jan. 2020 and immediately started hydroxychloroquine. It has helped my arthritis and inflammation symptoms by a huge margin. I also use meloxicam and Tylenol, restasis, compounded estrogen cream for vaginal dryness.

Please go on Smart Patients website to get additional help from other Sjögren’s patients. It is run by an MD with Sjögren’s and has helped me immeasurably.

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Hi Lynnie, I have refused the lip biopsy as I don't need more mouth sores. My SSA & SSB came back positive 30 years ago and since then I have had my bloods done again to see the progression of the disease. Most of the time it's positive but sometimes they come back negative. Since I understand that Sjogren's is chronic and doesn't have a cure, I don't get excited. My rheumy says he treats the symptoms. Take care, Joan

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@loribmt

Hi Lynnie, I have very dry eyes from a medical condition and what’s helped me the most is Systane Nighttime Ointment. It’s an over the counter med, no prescription.
It’s a thicker gel that gets applied inside the lower eyelid at night right before going to sleep.
It’s made a huge difference in my eyes to the point where i don’t even need eye drops during the day anymore. This lubricant keeps my eyes hydrated.

To apply I pull out my lower lid a little and squirt a strip about 1/2 long inside. Then let the ointment warm up to melt and spread over the eye. It’s a little messy if you get too much, so you’ll want to wipe the excess from the outside of your eye lid before sleeping. It also makes your vision blurry so again, just apply and go to bed. (Blurriness disappears by blinking)

Initially I was disappointed because it wasn’t consistent. Well, I found out I wasn’t consistent. LOL. Now I use it faithfully every night and have been over a year. It’s awesome! So you might want to give it a try.

I’d ask a pharmacist if it can be used with Restasis though.

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Lori, thank you for replying. I will try this ointment. The Restasis is expensive and I don't like the cancer implications. Hugs, Lynnie

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