I know I more or less asked this earlier but I need to know if you have several blood tests that say positive to sjogrens and it looks like possibly one hit connective tissue disorder is that enough to say you have sjogrens or is more absolutely needed?
Thanks
I don't know what you mean by one hit????? You can have a lot of blood work done ad the sjogrens blood work can come back positive. Some people can run positive blood work without any symptoms. Obviously, you must be having some type of symptoms that caused the doc to order the autoimmune bloodwork, so if the sjogrens is positive and you are having symptoms I would think the doctor would choose to discuss this test and your symptoms with you.
The obvious next step would be to order meds to treat the symptoms and one of the first meds used for treatment of Sjogrens is Plaquenil.....fatigue, pain, etc. The Plaquenil is anti -inflammatory and helps us all in a different way. Many times people will start the Plaquenil and some months or years down the road decided to quit the drug cause they think it isn't helping. Then...low and behold... they discover after being off the med for some time that all these symptoms will start to return. I had the same thing happen to me. Good luck in your endeavor. Irish
Hello, what blood tests did do ? Which one was positive? Anyway there is sero negative SJ, and the Drs. diagnosis is based on symptoms; that is if the Dr. knows enough about SJ, and it looks like there aren''t that many .... Luck
Sorry Irish,
I am just very frustrated. By hit I meant one of the blood tests came back showing possible connective tissue disorder.
I had positive SSA that showed on several blood panels that were run. I had a couple of Rheumy's say that I had sjogrens and I have many sjogren's issues.
To keep this short I have turned sero negative so the Rheumy I have is trying to use this and any other ridiculous excuse as to why I don't have sjogren's. The fact that my teeth problem started way before I had even heard of sjogren's was the fact that I grind my teeth so hard I break them and I break mouth guards. After breaking 3 in a row the dentist I now have worked with the lab and I finally have a guard I have not broken yet.
The reason I want to stay connected with that hospital is it is the way to get to specialists as the doctor I have here does not have the connections.
I had a test run and there are many things I cannot metabolize or I metabolize at the speed of light. This makes treatment a challenge. I was just hoping to hear that a positive SSA is accepted as you have sjogren's as many doctors have said. I am hoping that is as good as cutting your lip which I do not want to do as I heal very slowly.
Thank you trejonina for reminding me that the SSA was always showing positive on the blood panels. It is heck to have to fight a doctor!
Hi Confused
Which test hit on the connective tissue disorder? Was it anti RNP? If you have positive ana and positive rnp then that will throw you into the mixed connective tissue disorder which is a recognized overlap syndrome. The ss-a with it's symptoms would give you an added sjogren's. In my case it was the positive ss-b and associated symptoms. Sjogren's can be part of the mixed connective tissue disease spectrum.
Dear Confused,
Just a reminder; I have ALL the symptoms and conditions of Sjogren's, including extensive neurological damage, lung damage, bladder damage, etc. Terrible dryness, of course.
I was tested repeatedly for Sjogren's, and for almost every other possible cause, including genetic disorders.
I do NOT have Sjogren's. NOT AT ALL. Nor do I have connective tissue disorders.
In fact, I do not have any autoimmune condition, because my body does not produce excess autoantibodies.
I have another, far rarer, condition, Primary Immune Deficiency Disorder. You can have all the symptoms of Sjogren's without having Sjogren's Syndrome.
Regards, Elaine
It is not necessary to get a diagnosis of Sjogrens. I just happened to turn up positive after 40 years of symptoms. It has not made any difference in my condition. I have treatment for my issues and that is the way it goes. I am on IVIG for my myasthenia gravis for 12 years and also prednisone for the myasthenia and it has not changed my sjogrens symptoms. I still have dryness, aches and pains all over that come and go but mostly stay lately.
I have many tendons issues and I could go on. Actually, I have just learned to live with a lot of my issues. It isn't fun but I know that when a lot of my friends are complaining about their health problems I could top them with my stories any day. They don't tend to believe me or even care so I just keep my mouth shut and live my life the best I can. Actually, when push comes to shove our family is all that matters at the end of our lives. I am almost 76 so I have my own perspective after all these years. It takes resolve to get through life with or without autoimmune diseases cause life can be tough. Good luck. Irish
Hello.
I am wondering why you had several positive SSA results and your rhuemy still kept running it
till you got a negative SSA.
When my labs showed I had RA and Sjogrens....positive results, that was that, no more wasting time and money
to "over throw" the diagnosis. My rhuemy from then only checked on my CBC d/t medications I took (mtx)
No positive labs are necessary if you have symptoms but are sero negative. Most good rhuemy will TX you.
I'm just saying..........
Shelly
This is the secret.
There is no cure to sjogren.
Soooo....
Regardless of blood tests or lip biopsy, the treatment is *always* based on symptoms.
Rheumatologist has three main class of drugs.
Plaquenil - he will give this if patient has fatigue or joints pain.
Methatrexate - he will give this if patient has extra glandular involvement.
Non steroidal (NSAID) - if plaquenil does not reduce joints pain.
So in the real world scenario, diagnosis or no diagnosis of sjogren hardly changes the treatment protocol.
Thank you all for writing me,
I ran out of room and then could not send the last message. So I thank everyone for writing. I have been in a bad flare and had some really major stress which was just too much to take but you all have me back on track. I do have sjogren's and my ss-a was 306 on one test and high on the others.
The GP did the first test and after seeing a Rheumy the SS-a was still high.
The problem has been that the doc I really like had switched to work in a different field but is now back doing Rheumy work for a couple of days a week. My hubby pushed for the switch which I did not know he had done as that first Rheumy who needs to be in a different dept. as she is not fond of sjogrens; has never listened to me and says I don't have sjogrens because I went sero negative and I also did not have my tongue stuck to the roof of my mouth. Don't ask. All I would get out of her was how had I stayed married so long and then a recap of whatever was happening in her love life. Seriously! She evidently scared the heck out of my favorite Rheumy and I need to get this straightened out as the Rheumy I have now can and has helped me. I'm allergic to most meds and metabolize wrong. Treating me is a challenge. I have a had a test on my ability to metabolize and I know I am way off. The fillers can make a med not work for me or I can metabolize at the speed of light.
I would assume you are one of those people who have a liver that doesn't metabolize certain meds due to enzyme deficiency. I don't know much about it but had a neighbor who struggled with it for years and with pain control. She had Sjogrens and Rheumatoid arthritis. I also know 2 other gals who have/had Sjogrens in my small area. Two of them have passed away from cancer---not sjogrens.
Hope you can get things straightened out. Good luck. Irish