Decided to open this for people with Sjogens

[Silverlady]

Sjogrens Syndrome people have a hard row to hoe. And it is a never ending
row. The disease is a progressive disease primarily affecting the eyes, mouth, digestive tract, skin, hair, nails, and sometimes the nervous systm and organs of the body. It can also affect the connective tissue (muscles, ligaments and tendons) It is devasting. For example I was diagnosed with this disease in 2003. Since that date, I cannot read, make my beloved jewelry (I was a jewelry designer with a thriving business). I also suffer from the nerve damage often caused by Sjogrens. I have a small fiber painful sensory neuropathy. It feels as if I've been dipped in hot oil all the time. My eyes are like so many of yours severely dry and no hope of improvement. I also have rheumatoid arthritis.

Sjogrens is not well known by most doctors. They call it the "nuisance disease" meaning it'll annoy you but you'll be perfectly fine. Go home and use eyedrops and chew some gum when your mouth is dry. So many of them don't know enough to know the devasting results of this nuisance disease. There are good sites for this disease. http://www.sjogrensworld.org

We would be glad to have you there.
Billye

[mef]

Thank you

Thanks for opening this "thread" - good idea!

I'm sorry that you are suffering from all the Sjogrens issues - it must be terrible not to be able to read and to make the jewelry that you love. Have you tried any of the medications to help the dryness?

I've had dry eye & blepharitis for many months now and attributed it to long term contact use, extended computer use, etc., but recently went to a rheumatologist who sent me for blood work for SS - tests like ANA, Anti-SSA/SSB, ANti-RNP, ANti-Smith, C3, C4, ESR, CRP & Rheumatoid Factor, etc. Found out from the office staff that the only thing that tested positive was the RF (but I don't have arthritis!). I go back to meet with the doctor next month, but I guess it sounds like I don't have SS?

In the meantime, though, I have been reading about the disease and it sounds devastating. Again, I'm sorry that you are struggling with it and that hopefully reaching out and sharing your feelings with others here and on the SS board will help at least a little!

Take care.

[Silverlady]

Thank you.

mef,
If you have the dry eyes and positive Rheumatoid Factor it is still possible to have Sjogrens. There is a disease called seronegative sjogrens. I have the seronegative sjogrens. My bloodwork isn't positive either. My doctor was concerned about the neuropathy I had developed and was wanting to eliminate everything he could think of. At the time I did not have the dry mouth either. Only the dry eyes and the neuropathy. So he ordered a lip biopsy. Yeah..that sounds scary. It wasn't. They did a punch biopsy just inside my mouth sorta next to the lip. My biopsy was positive. Biopsy is the gold standard for Sjogrens. So then we knew why I had the neuropathy and the dry eyes. A few months after that, I started developing the stiff sore joints. So I have seronegative Sjogrens Syndrome and a Rheumatoid Disease (mine is of the spine and sacroilliac joints). So you can't rule out Sjogrens until a lip biopsy is done. I take medications for the Rheumatoid problems but there is no cure for Sjogrens. You can only use things that help the symptoms and I do the same things you all do for my eyes, including Restasis.

Billye

[Rebecca Petris]

Thanks for posting this, Billye. I'll add links to the Dry Eye A-Z section too.

The more cross-germination amongst internet resources like this the better!

For so many people here, dry eyes don't exist in a vacuum - they are part of a bigger disease (such as Sjogrens or other auto-immune conditions, or complications from LASIK) or are a side effect of a treatment for another condition (as we see here so often... anything from acne meds to cancer). We all need ways to get at the "bigger picture". This is particularly the case with Sjogrens, because it is a disease that often goes undiagnosed for years and people here with severe dry eye who have undiagnosed Sjogrens may be helped to a faster diagnosis by increased awareness of what Sjogrens is.

[mef]

Billye

Thank you for your post.

Wow, I guess I'm not out of the clear after all. Perhaps I should ask the rheumatologist to do a lip biopsy to confirm. Did it hurt?

Please forgive me ignorance, but what exactly is neuropathy? I've read about Salagen for dryness - do you take that?

Sorry to make you read more, especially if your eyes are dry and reading hurts them!

Michele

[Silverlady]

Symptoms of neuropathy

Here is a link to Peripheral neuropathy. Be sure to follow the arrows on the bottom of the article. http://www.mayoclinic.com/health/per...opathy/DS00131

I do take Salagen. It helps with the moisture in my mouth and digestive tract and as an additional plus, gives me a little more moisture in my eyes. But it is not a medicine to be taken lightly. It works on the autonomic nervous system and causes me chills, sweating, and a few more side effects. I have to consider the trade-off a lot.

Billye

[Lucy]

They did a punch biopsy just inside my mouth sorta next to the lip.

Can you tell us what a punch biopsy is like?

I am just starting Salagen and am not sure of how I'm going to like it. I have not noticed any help with my eyes, but has helped with the mouth dryness. I am NOT taking it 4xday as prescribed, but before bed and first thing in the a.m. I have to experiment a bit with dosage.

[Silverlady]

Sjogrens punch biopsy

Some of the mouth/lip biopsy's are painful, but the punch biopsy my ENT used was simply that.. He deadened the area inside my mouth on the bottom slightly inside my lip and made a small punch with an instrument. It took a piece of tissue about the size of a grain of rice out of the area, not much bigger. They then send this to be read by a lab. I didn't consider it painful at all. No more than an ulcer in the mouth. It healed with no complications.

If you decide to do this, be sure it is done by an ENT specialist with experience in this.
Billye

[Lucy]

Well, as the owner of what must be an "old-fashioned" biopsy, this sure seems a lot better.

What I had done by an oral surgeon: I saw the biggest needle I've ever seen in dental work. He surprised me as I normally close my eyes so I don't see the needle. It took awhile for the needle to empty the contents. This is the most lovely part of dentistry, getting the shot.

After the shot, his assistant pulled my lower lip down taut and straight down so he could make the incision. The incision was 1 inch vertical cut. I could taste the blood. While he "worked' on the open wound, the lip was held taut, pulling it down as far as it would go by his assistant. I could feel the snipping of the salivary glands when he was cutting them out with his scissors. After his work was done, he put in 4 stitches that would dissolve within a week.

They packed the area with cotton and I had to keep it in the rest of the afternoon to guard against any bleeding. I was given pain pills. The swelling was bad enough to make it look like I had a chew of tobacco in place. The swelling in my lip stayed for at least a week and then gradually went away during the next couple of weeks. It was done in July and I still have some numbness around the incision area and some lumps in the tissue. They are not visible from the outside of my face.

I wonder if we don't have this "punch biopsy" here in podunk USA? I sure wish I'd had what she was talking about instead of my procedure. Also, I had to pay cash because this doc isn't a participating provider! About one-third was reimbursed back to me by the insurance company.

[Silverlady]

In answer..

Lucy,
I had the punch biopsy done in Texas. A little town close to Dallas. So we do have the capabilities. It's just finding an ENT that uses this type of biopsy. Some do, some don't. We called around and I had to drive 50 miles away to have it done. No stitches. A tiny amount of residual numbness but nothing significant.
Billye

[Lucy]

Wish I'd known about that two months ago! I'm sure this must be available in Michigan also. I just had not known about it.

[mef]

Lucy - Sorry to hear that your biopsy was painful - I don't like needles either! How have you been feeling with your SS?

Billye - Thank you for the useful information!

[spaniel]

So interesting. You know what is odd? I had an ANA that was really very significant (grossly positive, not even close to borderline). But I was also tested for Srogrens-and it came back "negative". So upon reading about the seronegative Srogrens I have to wonder. The doc was really considering Lupus but after ,oh lets say, 7 yrs, the ANA started to come BACK NEGATIVE. THE CAPS LOCK CAME ON.. AND i AM NO COMPUTER WHIZZ SO i HAVE TO GET IT OFF.. sORRY FOLKS.

[Lucy]

To MEF:

Lucy - Sorry to hear that your biopsy was painful - I don't like needles either! How have you been feeling with your SS?

See my post of today for details.

[laine]

sjogrens and negative bloodwork

Hi,
I am new here but have had Sjogren's syndrome for almost 6 years. My bloodwork is all negative but I have many symptoms of Sjogren's such as severely dry eyes, dry mouth, dry nose, dry lungs and in the past I had more of the swollen glands and achy joints. Apparantly 30% of Sjogren's patients have negative bloodwork, according to what I have read.
Elaine