Rheumy appt

[mamascan]

Hi All,

Just an update after my appt w/rheumy. Dx of Sjogren's confirmed. Being I had already lost 2 teeth in 5 yrs and a submandibular gland and current problems with the other gland, my ENt said Sjogren's and Rhuemy confirmed dx. All this even though my SSa, SSb and anti ro were negative. He felt with my history he had no problems with that dx. The SLE however is still not confirmed dx. ANA this time 1:80, still negative. Although I told him about the 2 flares since last seen in Feb, accompanied by mouth ulcers, malar rash on face and daily temps of 101.
He feels the SLE dx should wait until we actually have a positive ANA or some organ process before starting any meds like plaq.
Went to a new dentist today, even though I haven't seen on in almost 5 yrs-I know (I'm bad) :blink: My check up was good, no cavities or problems other than bone loss. Hurray for that away way. Believe it or not I was the practice's very first Sjogren's patient.

Hugs to all,

Michelle :flowers:

[redrose77]

I may be wrong but I could have sworn that Sjogren's was also treated with plaquenil from reading the posts of others with this dx- also from my rhuemy's statement that I could have a second AI disease and she suspects RA or Sjogren's. She said as the treatment is the same she wasn't going to worry about it until the lupus was under control. But maybe someone with more knowledge will come along who would know for sure.

[confused1]

Hi Michelle,

Yes, Sjogren's is treated with plaquenil. And, regardless of whether you have SLE or not, you can still suffer many ill effects from the Sjogren's. It can affect any organ in your body, including your nervous system, and can cause fatigue and "brain fog." I have always had negative blood work. I was DX w ith Sjogren's with a lip biopsy. Thankfully, I was put on plaq early on. It has helped. Before it kicked in (really it took many months) I had a hard time getting out of bed and often slept 18 hours a day.


It isn't easy finding a physician (even a rheumy) who really understands Sjogren's. It has some differences from SLE that are very important. But, I believe you should at least ask your physician about treating you with plaquenil. It's a safe medication with very few side effects. And it is very helpful.

Good luck,
Sunny

[Lily]

Hi Michelle,

Yes I tend to agree with the others and especially as SLE is also suspected. Sjogrens unless it's a very very mild case presenting with just slightly dry eyes etc. is usually treated with Plaquenil as a first line defence, so I disagree with the comments your doc made there, unless there's some other reason for not taking Plaquenil for you? I also conservatively disagree with an ANA of 1:80 being negative, depending on what symptoms you have along with that ANA. Most labs class 1:40 as only just positive and most docs dont act on it, 1:80 is classed as a low positive most places and along with signs and symptoms of disease then treatment would be started if they are pretty sure that you have a CTD.

Sunny is right about some doctors knowing little about Sjogrens, many docs think it's nothing, just dry eyes and mouth and no big deal. It's every bit as confounding as SLE and whilst organ involvement is not always the case (just as it isnt with SLE) it very often goes along with it and it is a very serious disease with the potential for life threatening events just like SLE. It should at the very least be followed very closely with someone who is familiar with all it's possibilities.

Why wait for something to go wrong, once they diagnose they should be prepared to start treatment so that the disease is brought under control.

Take care,

love
Lily

[flowergarden]

I have Sjogren's and my doc has me on Plaquenil. He said the treatments for lupus and Sjogren's are basically the same.

My doc also said that while NP symptoms are more common with Sjs, they tend to be more serious with SLE.

Plaquenil is one of the safest drugs we have. Period. Safer than aspirin. It's not expensive, either. Since it has the ability to alter the course of the disease, I don't know why your doc doesn't have you on it.

Make sure your dentist stays on top of your Sjs. It can really do a job on your teeth. You should have frequent exams and fluoride treatments.

Keep us informed what happens. :flowers:

[mamascan]

To Redrose, Sunny, Lily and Sue,

Thanks ladies for your responses. I am going to call my PCP to get an appt next week. He didn't send a letter to rheumy on inflammatory processes as he promised 2 wks ago. :tantrum: If he had would the rheumy have dx'd the SLE? I was looking over the copy of latest labs and noticed ABS gran, ABS baso and my Baso were all high. Monos and lymphs were within normal limits though.
Anybody have info on high baso?

Thanks for your support,

Michelle :flowers:

[Lily]

Hi Michelle,

What does the ABS stand for (it's nearly 10pm here :lol: ).

Here's a page on the many reasons for high basophils:

http://www.fpnotebook.com/HEM89.htm

love
Lily

[Sarah A]

Hi,

I have sjogrens and am on plaq as well as a few other treatments!

Like many others here, I wish that dry eyes and a dry mouth were my only problems!

Hope you make some progress with the plaq.

Sarahxxx

[kellykay]

well my ana was 1 80 last time they checked and i went to doctors yesterday ..
i am not dxed with anything other then ovarain failure and early menopause..
my post is boy am i confused now..

I guess i am lucky here my gp is the one that is following up on the sjogern's ..
piecing it together.. I never knew the nervous system could be involued .. sudden tingling and numbess came on sat.. she checked my glands in my face.. and neck ..
( i was thinking what is she looking for??!!)

Apperantly it can cause alot of problems.. i have sinus problems no one can make head nor tails of... i told them My sinuses feel swollen inside like they are super dry... the immunologist didn't care and said my eyes were hayfever or something dumb... He did check my ss-a and b i think but it was negative at the time.

. so today i was sent for a more specfic test A specific gene named HLA-DR3 is found in high frequency in Caucasian patients with primary Sj?gren's syndrome.

I found this article and thought it was great.. IN regards to primary sjogren's

There has been a great deal of research to determine hereditary factors associated with Sj?gren's syndrome. To summarize these complicated studies, hereditary factors are important. Particular genes (such as human leukocyte antigen or HLA genes) are inherited in the same manner from parents as are genes for hair color or eye color; that is, one gene from each parent. The HLA genes are important in controlling the immune response and many current research studies are trying to determine exactly how they perform this task.


To think my family doctor ordered this test... she is on the ball let me tell you..

[Lily]

Hi Kelly,

I'm glad your GP is trying to help you out in what is an incredibly frustrating situation to be in :wacko:

The HLR (Human Leucocyte Antigen) type tests are not often run- whilst they can point to a tendency to possibly develop a certain autoimmune disease, many family members have a certain type of HLA but never develop the disease. The disease associations are loose also, certain HLA types cover several disease associations that fall under their particular umbrella.

So whilst it might uncover a genetic tendency to possibly develop a certain disease,it by no means is diagnostic. I bet if they tested all my relatives, they'd find several different HLA types but I'm the only one with SLE, Sjogrens and Vasculitis.

Good luck with fitting the pieces of the puzzle together - a very frustrating time for you.

love
Lily