Hi, I was just diagnosed in February with Sjogrens based upon my positive SS-B. SS-A was normal as well as the rest of the panel.
I have read that SS-B is rarely elevated in isolation. The first rheumatologist I went to said he had no diagnosis for me since the Lupus panel he did was all negative except the SS-B. My new rheumatologist started my on Plaquenil which I have begun taking but really know nothing about it. My symptoms are weakness and fatigue, fasiculations and spasms all over my entire body including my neck, back, buttocks, legs, arms, hands, feet, entire leg,etc. I have some joint point, groin pain, headaches, etc. I generally feel ill like a have a dull flu or some kind of virus all the time. Its getting so bad I cant exercise much anymore and sit much of the time.
I'm wondering imy sjogren's diagnosis is correct or if there could something else going on. Anyone with any knowledge of being SS-B/La positive only?
Well hello there and welcome to the forum! And boy do I understand you! I was initially only ana and ss b positive. My first rheumy said there can be no ss b without the ss a. I was like uhm, then why does my blood work come up that way? Struggled three years and four rheumatologist. My current rheumatologist ran the anti RNP antibody which was high positive. It's specific for Mixed connective tissue disease. MCTD is an overlap of mainly scleroderma and lupus without having their specific markers. It also can include sjogren's, ra, dermamyositis and another one. Since I have the ss b my rheumatologist classified me MCTD with sjogren's based on symptoms.
I also have severe cramps and fasciculations. In my case diagnosed as Isaac's syndrome, but the symptoms can also be benign fasciculation syndrome if you have no cramps or benign cramp fasciculation syndrome if you do have cramps. It's another autoimmune disease having to do with antobodies to the voltage gated potasium channel.
Of course first doctors have to make sure to rule out simple things like electolyte imbalance, vitamin difficiency or thyroid problems.
Plaquenil can take up to 6 month to go to work. For me it helps with dryness, fatigue and joint pain to some extend.
If you look at our signature lines you will find we list our medications and different diagnosis.
I'm sure many more members will chime in!
Again Welcome!
Bumping you back to first page.
Welcome.
Hi! I'm kinda in the same boat. I got transferred from my OBGYN back in October 15 bc my Blood pressure stayed elevated after pregnancy and I needed to transfer to a PCP to continue care for that. I complained of fatigue and joint pain. I guess it prompted him to run an ANA panel, which to my surprise was positive as well as SSB only. This Dr. Lab has a 0-.9 has negative and I was 2.9 (or close to that)
Fast forward to my rheumatologist referral in February and my ANA still positive but this lab gives more detail. It was 1:320 Homogenuous. BUT, this is what leaves me so confused. EVERYTHING else was within normal limits. This labs reference is 1-120 range is normal and my SSB wasn't even close registering at an 11. So not even close. To say I'm confused is an under statement.
My opthamologist started me on restasis for dry eyes. And based on my symptoms and PCP blood work my rheumatologist suggested plaquenil, but I'm still breastfeeding. So for now, I'm not doing anything other then taking b12 and d vitamins bc they were borderline low and a daily probiotic. I am still very fatigued, get weird pains in different places on my body, dry eyes and skin, brain fog... All tha fun stuff. I'm 31.
So anyway, there's my sorry thus far. I searched and searched on answers for SSB positive only for 5 months only to go to rhuem and their lab showing negative. Who knows what's going on. He did dx me with mild Sjogrens based on symptoms and other dr'a labwork. We shall see what this months follow up brings now that all his blood work is in and all negative.
Do you have any sicca (dryness) symptoms?
Cccourt... I apologize. I guess what he was saying is that I am not that bad...yet, or may never be. It wasn't anything to be taken personal.
Let me add, I have created one post on here and replied to one post here (this one) after finally joining after lurking for many months. Neither has given me that friendly and welcome feeling.
I'll go back to lurking. God bless you all.
Oh Stef, don't take it like that! You are very welcome here. All C3 was saying that it's always amazing to hear doctors saying someone has a mild case of some thing. Many of us have the heard the same words from doctors when our symptoms were much worse then what our blood work shows so leaving us with out treatment. It was in no way directed at you, but the doctors that love saying that.
Hi Stef, just wanted to formally welcome you (whether you decide to re-join or not)
and to thank you for your contribution to the forum. :)
We can learn something from every story shared.
From what I understand, different labs may produce different results and there may be false positives or false negatives.
Sometimes pregnancy may also trigger different AI responses in the body.
Perhaps give yourself some more time to possibly get back to yourself before going on meds,
though you don't need a definite diagnosis to try Plaquenil.
Please Stef, dont judge us all by 1/2 posts. I have been a member here for many years now, and find the feedback one gets is amazing. If anyone wants a (hug) or any info, sympathy, or just company, one gets plenty here.
We all are suffering too you know,
anyway stick around and here's a big hug, and a warm welcome if you do..
All the best, Dolly
Yes, SjoGirl, I do have sicca symptoms. My eyes are very dry and I have decreased saliva flow.
I started on plaquenil in February. Those on plaquenil does it cause your immune system to weaken?
I have had a terrible sinus inection.
I was just diagnosed yesterday at Duke with small fiber peripheral neuropathy due to the Sjogren's.
Doctor wants me to start Lamictal for the pain.
singeanna,
Plaquenil is an anti-malarial drug. I have heard both from different docs ~ that it is a mild immunosuppressant & that it is not. I decided to check for myself. When looking it up a few mins.
ago, I found a description on drugs.com which uses the word suppress a few times. I have CVID and get infections easily, but do not think that Plaquenil has caused me to have more than I normally would (I also give myself IVIG infusions).
I have found that no matter how much I research a drug...I can never determine how I will respond without trying it. As you know, everyone responds differently.
Good Luck.
SjoDry
I have muscles spasms all over and fasciculation also... is it part of sjogren?