Hi all,
I had a follow up with my rheumy today and she basically told me since I have no signs of sjogrens in my bloodwork I don't have it. When I told her many people can have it without it showing in the blood she kind of argued about it with me. So she went and got a big medical book and brought it to me showing that you must have two of the three positive findings to have it. They were blood antibodies positive, ocular dryness test positive (schirmers I think), and lip biopsy positive. She acted like that proved her right, but I think it proves me right in that you can still have it witjhout it showing in the blood.
So I have the feeling she is not taking me serious now. However she is referring me to an ENT to review my oral dryness. Should I ask him to perform a lip biopsy? Also, I asked her if ther cevimeline i've been taking for about 5 weeks now would alter the results of a Schirmers test and she said "no" it only effects saliva glands, not eyes. I'm pretty sure I've read it can help eyes also.
I have a follow up eye dr. appointment in 2 weeks they will insert punctal plugs. I am going to ask him to do a schirmers test. Last time they only did the tear quality test not the schirmers or eye staining. If schirmers is one of the three diagnostic requirements I feel it should be done. My question is, does being on cevimeline effect results of schirmers test? Or can it effect a lip biopsy test? should I stop taking it for some time (how long?) before the tests?
Thank you all so much for any insight to this, I have been reading a lot here and find it so helpful, so far the doctors I've seen have offered little help or information. I have found much more useful information reading here.
Has the cevimeline helped you symptoms? For me it helps everything~ mouth, eyes, joints....so I am thinking yes it will affect your eye results, if you have seen improvement in your eyes since taking it.
Oh dear, there are several camps when it comes to diagnosing SjS, some are firmly in the "the tests have to prove it" while others go by symptoms. I had blood markers from the beginning, but never a positive lip biopsy, one doc said I had SjS, another said undifferentiated connective tissue disease.
On some level it didn't matter, Plaquenil was the go-to treatment, though I could not tolerate it. I am on Immuran and Evoxac as well as some other drugs and found both to be game changers. Like Spring Evoxac has helped with all my dryness.
As for lip biopsy, one of my docs said it's barbaric and that proved true for me, it was quite painful. You might ask about a salivary scan, which will show if your glands produce saliva, mine did, but somehow it wasn't making it beyond my glands. Others have had biopsies with few issues.
Are you having symptoms other than dryness? There is something called Sicca syndrome which can be part of SjS or stand alone condition.
Evoxac definitely helps with my dry eyes. I have punctal plugs (top and bottom) in both eyes. With plugs and Evoxac, my worse eye is tolerable and my better eye pools with tears and occasionally overflows. I definitely would not take Evoxac before going to an ophthalmologist to test tear production.
Quick search shows half life of Evoxac is approximately 5 hours. The half-life of a given medication is how long it takes for the body to get rid of half of the dose. Not sure what that means regarding how long all of the medication is out of the body. Maybe about 5 more hours? Maybe one of our nurse board members can opine on that.
I don't have any input regarding lip biopsy experience as I didn't require one for diagnosis, but I understand whether to get one could be a hard decision. If your worst symptom is eye and mouth dryness, and not anything plaquenil can help with (joint pain, fatigue, brain fog), I'd say lip biopsy might not be worth it if Evoxac is working for your mouth and eyes and your doctor will continue to prescribe it (and insurance, if you have it, will pay for it). Ophthalmologist can further help with eyes. Rheumatologists don't have much to offer for Sjogren's.
Dear Judes,
I have found that most doctors do NOT like to be educated by their patients. However, if my doctor withholds treatment of symptoms that could improve my quality of life, then I CHANGE DOCTORS.
The technical definition for Sjogren's is designed to insure similarity of Sjogren's patients when they are part of a research cohort. We need all the 'apples' to be the same when we measure response to new medications, for example.
So the KEY here is to get the treatments and medications you need to ease your symptoms, regardless of the diagnosis.
Do not argue with your doctor. She's technically right. What you want is care for you and your symptoms. If she doesn't manage your symptoms, she's not the right doctor for you.
Regards, Elaine
I wholeheartedly agree with Elaine! I am seronegative and my Cleveland Clinic rheumatologist will not use the word Sjogrens for my diagnosis but takes all my symptoms seriously and treats them accordingly.
Hope you get your symptoms treated and feel better soon.
Anna
Thank you all for your helpful and thoughtful responses. It is just so hard trying to figure this all out when you feel so sick . I do think the cevimeline has helped my eyes a bit too, and it has really helped my saliva. Before taking it I could hardly talk due to tongue sticking to the roof of my mouth.
The dryness seemed to happen so fast, but I do have other symptoms, like pins and needles in arms and legs. I have had painful fingers and feet which come and go, and now seems to be mostly in shoulders like someone is pulling them out of the sockets. And more recently I've had weak and wobbly legs. Also the extreme fatigue and bouts of brain fog and gerd and some skin color changes.
But for the last few weeks I have been waking up every morning with painful hives on upper and lower eyes and jawline. When I showed them to my rheumy she suggested I was allergic possibly to my cosmetics, and said I should see an allergist, but did not offer help with a referral.
I guess the reason I panicked when my rheumy said definitively that I didn't have sjogrens since it isn't in my blood, was that I saw any chance of relief being taken away. My own PCP doctor tells me I have it but am seronegative, and is surprised the rheumy didn't give me steroids, and said she wont treat me for it herself because that's the rheumy's job. :( When I brought up the seronegative possibility to my rheumy I tried to be as humble as possible putting it into a question, as I know drs don't like to be schooled by their patients.
She did however tell me I could stay on the cevimeline for now since it is helping me, thank God, because it has a lot. But then she said she saw no point in me getting a schirmers test even though its one of the 3 diagnostic tests. She is however referring me to an ENT, that is why I was wondering if I should get lip biopsy. And she also referred me to an eye dr., and a neurologist.
I would switch docs if it were easy, but I am limited being in an HMO network insurance plan. There are like 2 rheumys in the area and the other has a 5-6 month wait! I am glad that she is at least helping with my dryness symptoms. But I can feel my eyes and glands being attacked full force every day and I can't help but wonder if steroids would stop the attack and help preserve what little glandular function I might still have. That is what really worries me :(
Thank you all for the kind words of wisdom, I do so appreciate it.
I have a theory on doctors who get the textbook out and insist those few written words will influence their patient treatment for years to come. These doctors are the ones that I always have a little reserve about and sort of keep the door open(so to speak) so I can make a run for it.
Medicine is an imperfect science. There are many things that sort of stay the same but one can never write everything in stone because there are medical cases that change everything. If it was me I would head for the exit and find a second opinion or another doctor.
I had health problems for almost 40 years and every one of my issues could later be attributed to Sjogrens, Hashimotos or Myasthenia and not one doctor picked up on it. I Started with symptoms in 1964 and ended up losing all my teeth, had every symptom in the book and finally got diagnosed in 2003 almost by accident. Sort of an afterthought. They did a lip biopsy and it was positive. Blood work did not convert to positive til 2005 and I had no dry eyes until 3 months after diagnosis of Sjogrens.
So much for everything going by the book. Otherwise I had cavities galore, arthritis, gallbladder problems, breathing issues, bladder issues, GERD and many other things occur. Doctors thought it was all in my head. I just kept pursuing diagnosis cause I felt lousy all the time and had to nap so much. I told my hubby I wanted to know what you should put down for cause of death when I die. Good luck. Do not accept a doctor who doesn't believe you and belittles you. Irish
I agree completely. I?m so sorry about all you?ve had to endure Irish, and for so many people here in the same situation. Imagine a health care system that rewarded doctors based on good patient outcomes. If only.