The forgotten cause of sicca

[gphx]

http://www.ncbi.nlm.nih.gov/pubmed/2625685

[gphx]

Some of the stories about doctors amaze me.

[ohiolady]

gphx.

On my first visit to the rheumatologist, I was tested for sarcoidosis, along with several other autoimmune diseases.

Anna

[inga]

This is ONE very good reason one should consider the lip biopsy. 

It may not help you get diagnosed with Sjogren's but it can rule out other things.

They can usually weed thru it for this.

[YYC_ Mommy]

My mom has Sarcoidosis and was diagnosed about 15 months ago.

I have dry eyes and mouth but I have positive blood work for Sjogren's. My first Rheumy took a chest xray, which was normal so he said that I could not have sarcoidosis.

I know from another member that you don't necessary have issues with your lungs right off the bat.

I am onto my 2nd Rheumy who is running more and different tests than the 1st doctor so we will see if she comes up with anything different.

This is an interesting article! Thanks for sharing.

[gphx]

Hi YYC,

Many people with sarc never have lungs issues at all. It isn't typical but sometimes multiple family members have it. They don't know if it's a genetic commonality or just exposure to similar environmental triggers. In any case I'm really glad they're going to check you out just in case. I have an abnormal chest CT, high ACE, high CRP, and lots of Sjogrens issues so I may have both. It'll take a lot more money than I have right now to find out for sure.

Please do me a favor and give your mom this url: http://www.inspire.com/groups/stop-sarcoidosis/discussions/

Thanks.

[YYC_ Mommy]

Hi YYC,

Many people with sarc never have lungs issues at all. It isn't typical but sometimes multiple family members have it. They don't know if it's a genetic commonality or just exposure to similar environmental triggers. In any case I'm really glad they're going to check you out just in case. I have an abnormal chest CT, high ACE, high CRP, and lots of Sjogrens issues so I may have both. It'll take a lot more money than I have right now to find out for sure.

Please do me a favor and give your mom this url: http://www.inspire.com/groups/stop-sarcoidosis/discussions/

Thanks.

Thanks, I will pass it along to her. Best of luck to you.

[Scottietottie]

Hi 

Here in the UK we don't get to pick our doctors - we get referred to them by our GP. We can ask questions about tests but we can't demand them either.

It is possible to go private - pay a lot and be demanding - but without advice or word of mouth recommendations - finding a good doctore is hit and miss anyway. Private doctors are not better than NHS doctors - they usually work for the NHS anyway and do their private work out of hours.

I found out about Sjogren's from the internet - but I didn't think I had it. I had been using a search engine to see if hashimoto's thyroiditis could cause itchy eyes.

I eventually quizzed my endocrinologist about this when I next saw her. She asked questions about my eyes and dental history, referred my for further blood tests and referred me to a rheumatologist when the results came back.

After that I used the internet a lot and nearly everything I have gleaned comes from either this site, a lups forum or the thyroid forum on About.com.  Far more informative than the doctors I've encountered so far!!

Take care - Scottie 

[Dolly Dimples]

  Scottie, i too diagnosed myself from this site years ago!.

   I went to the Doctor and I told him that I had it!

     Still no one really treats it as serious!  Dolly

[Patze]

Oh boy, I got diagnosed as having SICCA for the first four years of this mess and it's only been a little more than a year that the diagnosis changed to SJS.  It was a rheumy that first mentioned SJS and had to talk me into using Plaquenil; amazing. 

Shucks, I couldn't spell Sjogren's much less tell you what it was, as I was too busy trying to figure out what in the world was wrong with my body, and wondering how to fix it .

And like Dolly, I too have had doctors that pooh-poohed the diagnosis over the years; sad, isn't it?  Just wish the doctors would think about it before they said anything to us the patients.

My hat's off to all those that put the pieces of the puzzle by themselves!


Patze

[deeindiana]

I'm sorry to be dense. I've done some googling and still don't get it. Is sicca and Sjogren's the same thing?
Deb

[anita]

Deb,

No, they are not the same.

Sicca is the medical word for dryness whether it be eyes, mouth, etc. and can be side effects of medicines or other causes.  Sjogren's is when the sicca symptoms are confirmed to be caused by the actually autoimmune process attacking the exocrine system.

Hope this helps.

[deeindiana]

Thanks anita. That explains why it always came up in a search with SS.
Deb