Blood test negative but is that even enough?should I have a lip biopsy!
Posted , 9 users are following.
Hi guys. Just want to say that I'm disappointed in my rhuemy. I've been ill for 3 years and only true evidentiary my elevated inflammatory markers. Edd rate is 49 and the other test is 4....my dr still can't diagnose me. But she won't do the lip biopsy because she thinks the blood test is enough...my gland on my face by my jaw and chin hurtMy sinuses feel dry and inflamed. I'm itching a lot off and on tendinitis on my shoulder but most of all around my left side of my chest hurts a lot around my breast and tingling hands and arms. It sucks! Just not sure what else to do
1 like, 33 replies
phyllis75890 Jasflower
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I have to ask, are you in England or the U.S.? The reason I ask is I'm in the U.S. And I would just get another doctors opinion, are you not able to do that where you live? My blood tests are marginal but my symptoms are so severe that my dr. had no difficulty in diagnosing Sjögren's. She put me on a gluten free diet and plaqinel, both of which helped. It's still a difficult disease, but am dealing with it.
Jasflower phyllis75890
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Hi. Yes I'm from Torrance ca. And I have pretty good insurance but your right I should get a second opinion it sucks because the dr I'm seeing now is supposed to be the best in my areaI'm now trying to figure out who to see next
Kathy123 Jasflower
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Hey, Jasflower, I just replied to you, having not seen the other posts. Then I saw them, and you've gotten a lot of good advice. But you say you are in Torrance! I'm in Rolling Hills Estates, a neighboring town. Tell me who your rheumy is, and I can give you a suggestion for a doctor to give you a second opinion.
Jasflower Kathy123
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Oh wow we are neighbors lol... i see dr Mehdi at the arthritis treatment center been seeing her since 2014 and she wants to put me on humira but says she can't actually diagnos me because she can actually pin point what I have yes any recommendations would be appreciated thanks
Kathy123 Jasflower
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Dr. Mehdi is in the same practice as another rheumatologist I went to for several years. If you went to him, his approach might be the same as Dr. Mehdi's. The doctor I see now is Orrin Troum, M.D., in Santa Monica. It's an inconvenient drive, but worth it to me. He takes the time to explain everything. If you want a second opinion, he would be a good choice.
I don't think anyone can magically come up with a label for your condition. I had symptoms for 33 years, and saw some great rheumatologists in that time, before I had a positive SSB test, which confirmed my diagnosis. Meanwhile, my treatment would have been the same, whether it had been RA, lupus, or any of the other diseases in the same family.
Maybe if you ask Dr. Mehdi if a positive diagnosis of Sjogren's would change what she recommends, you will find out that treatment would be the same, regardless of the label.
Jasflower Kathy123
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Thank you 😊 I will call today to make an appointment in Santa Monica I don't mind driving .. so in your message you said ssb test? Does that mean lip biopsy for sjogrens? So what is your treatment now ? And how are you feeling over all right now?
Kathy123 Jasflower
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Hi Jasflower.
I'm sorry you are not feeling well. It's a bummer that these things aren't more well-defined, but I don't know what a lip biopsy, or for that matter a positive diagnosis, would do for you. If your diagnosis were definitely Sjogrens as proven with a positive biopsy, what would you do differently? Probably nothing. On the other hand, lip biopsies sometimes produce false negative results.
My current rheumatolotist and the one I went to before both say they no longer order lip biopsies because they are painful and don't prove anything. Eventually, I had a positive SSB test, so my diagnosis of Sjogren's was confirmed. But since there is no cure for Sjogren's, I continue to live with the dryness, the aches and pains, and the swollen glands. I am still on the Plaquenil I have been using for several years, and that helps.
I hope you will use your energy to look for ways to feel better and stay as positive as possible. Good luck.
Kathy
Jasflower Kathy123
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Thanks kAthy... I guess my thing is I want a true diagnosis because I don't want my dr to treat me for something else and don't want her to put me on something like embers when she should give me planquenil. But either way both meds are very scary to me. And right now I'm. It taking any meds
Tumtum1963 Kathy123
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It can make the difference of being prescribed Plaquenil or not - and if you're in the UK then confirming Sjogren's will probably mean you can get all the topical treatments on repeat prescription which makes them either free, or much cheaper. It also means your rheumatologist and doctor should hopefully keep a closer eye on your for co-morbidities and possible lymphoma. My lip biopsy was 100% positive and this has given me great peace of mind as well as opening the door to further DMARD treatment options should I choose them.
Jasflower Tumtum1963
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Tumtum1963 Jasflower
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What I mean is that if you have primary Sjögren's you are about 40 times more at risk of getting non Hodgkins Lymphoma than the rest of the population, including those with other autoimmune diseases. This is one of the reasons why many with Sjögren's aren't offered immunesuppressants but are mainly offered Hydroxichloraquine - which doesn't work in the same way as other DMARDs. Immunesuppressants also increase the Lymphoma risk so it's a bit of a double whammy if you take them, as I do. The risk is still relatively tiny though - maybe about 5-7%.
This is probably another reason why people get this notion that other rheumatic diseases are more serious - because often those with primary Sjögren's go untreated so are left to find natural ways of dealing with their illness. Whereas if you have RA they focus on treating it aggressively to stop it eroding the joints. There are no equivalent treatments for Sjögren's so this in turn leads to it being under recognised.
Tumtum1963
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Jasflower Tumtum1963
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