Oh Susan honey, #1 you need to see a Rheumatologist ASAP! #2 Sjogrens does NOT always show up in blood work, it can take years to show up!! We can suffer for a very long time without diagnosis!! Please don't give up, go now and find a good doctor that knows and understands Sjogrens!!! Being tired can all be part of it, there are days we can hardly move, so tell your husband to read up on it, and be patient with you!!!!!! You are NOT a hypochondriac!!!! Sjogrens mimics so many other auto immune diseases, it is so very difficult to diagnose. You could likely have another auto immune issues along with it...like RA, Raynauds or even Lupus, or something else. I know, it's crazy...but don't you feel crazy!!!! You are not!!! There are meds they can give you, depending how severe, or far along you are. One is plaquinel, another is imuran, and of course prednisone. imuran and prednisone are what is helping me at the moment, but my Sjogrens has gone inside to my organs, this does not happen to everyone however, so I am on a slew of other meds for my organs to continue to function. Some people are lucky, and only have dry eyes and mouth. You also should be seen by a dentist twice a year if you have dry mouth, as we can lose our teeth, dry mouth causes bacteria, which causes us to lose our teeth, so floss as often as you can! Also if you go on meds, you will need to be seen by an opthamologist, as you will need your eyes checked every 3 months due to the meds, those meds can cause eye issues in SOME people. But right now, the most important thing is to find a really good RA doctor as soon as possible! I wish you good luck, and please let us know how you are doing, and remember we are here for you to talk to any time! Feel free to email me or anyone if you want to talk. God Bless!
Thank you for the encouragement! I AM going to see a Rheumatologist. I am going to see if I can find one that really knows SS.
Fatigue & dry eyes are 2 of the main things I deal with but one other things I read about are mouth sores. Mine started with a place on the inside of my cheek. Neither the dentist nor the oral surgeon knew what caused it. It started with like an ulcer I think and it just kept getting worse to the point it was kind of like a cut that would not close up and just kept opening up. The first oral surgery I had on the spot the surgeon biopsied it but I think just for cancer. A year later I had surgery on it again because it came back. I now have times when my mouth hurts like I have ulcers all in my mouth and the area of the surgery will have "flare ups". (I am having one now). I notice that it seems like when I am really tired, or stressed I have these flare ups. I have always thought it seemed like an autoimmune thing but did not know exactly what. That surgeon even sent me to see the surgeon that was over the students at the college here that is for oral surgery. He was supposed be the top person that I could see and even he couldn't tell me what it was, what caused it or what to do for it. That along with my fatigue, (I take a nap in my car on my lunch alot of days), dry eyes & blurry vision, joint pain, soreness in my body, sore and scratchy throat, swallowing problems and getting choked,....etc. etc., makes me feel surely I suffer from SS.
Also, are you familiar with SS and Endometriosis? I just saw that they can be related. I do have Endo & even had to have a hysterectomy due to a large cyst (it was an Endometrioma) on my right ovary.
I really appreciate being able to talk to y'all about all this. I don't know if anyone can suggest a good Rheumatologist that knows SS in Houston or not but if so I would appreciate some suggestions. Thanks again!
Oh yeah, things do not seem to taste right also I have gained weight ! 
Hi Susan, both my mom and I have issues with our mouth. My mom has Lupus, and has mouth sores, and awful tongue issues. I get sores on the sides of my tongue. Mom has all but lost her taste. I had endometriosis very bad when I was young. I had a partial hysterectomy at 24, they saved as much as they could at the time, but then at 33 it came back with a revenge, and had to have a complete hyst. My Mom had it when she was younger, and lost one tube and ovary. I now have both SS, and Lupus. My RA doc said a lot of times, if you have one, SS and or Lupus, you can have the other, as well as other auto immune issues. Also, the lip biopsy does not always show one way or the other either. My doc is not fond of the procedure because of that. My mom's Lupus was first found by her dermatologist, as it started when her hair started falling out, so it was more topical, then went inside. The mouth sores are because your mouth is dry, and your dentist should have figured that out. My dentist is very familiar with SS, so he really talked to me about flossing, and what to use. He calls me his flossing queen. LOL I am terrified of losing my teeth, and this is very common, so I really take good care of them, and see him regularly, and so far he says I'm in great shape. You need to get on some meds to help you with the joint pain, and fatigue. I know some people say diet works for them, it did not work for me, but you do what is right for you. I couldn't function, so I went with the meds, and am feeling much better now. But, like I said, my organs are involved now, so I have to be on more meds. I waited too long, trying the diets, and got myself in trouble. I went into kidney failure, it has taken about a year for my doctors to get me stable. I do get flare ups, but still better! I really do wish you luck!!! Hang in there!!
Hi Susan
Was planning to come on just to suggest acupuncture for fatigue (they always ask how is your energy so say that you need more), only to see your question about SS & endo! I have both, total hysterectomy @ 27 and 27 years laterit came back & cost me a piece of colon. If it comes back in another 27, I don't plan on being around lol.
Hi SjoDry,
Im interested in more info on your support group. I've been trying to figure out what's wrong. I been having so many symptoms since 6 months ago that started with sudden racing heart, dizziness, shortness of breath and chest pain. Have done all sorts of bloodwork and tests, and just today my bloodwork came back positive with 1.8 for SS-B, (negative is less than 1). Everything else negative
(SSA, ANA). My rheumy says it's very mild SS but my symptoms are anything but mild. They also seem to flare up when im about to have my period. Have you heard of a false positive? Is it common for ppl with SS having sudden symptoms like mine when it starts? Im considering going for a 2nd opinion. Btw, Im 47 and perimenopause was/is a contender and checks off a lot of my symptoms as well. Id appreciate any info. Thanks so much.
Hi Millie.
Our support group (SIP ~ Sjoggies In Pittsburgh) meets quarterly. We have an upcoming meeting, but no date yet. Our speaker will be a doctor who has developed a medicine for SS & wants to tell the group about it.
What I have learned about SS is that the journey is different for everyone. For some it is mild, for others more involved (no matter whether you test positive or negative). The symptoms can develop quickly & also play hide-n-seek. One day you have A, B & C symptoms, and the next you have D, E & F. They can come & go and change in intensity levels.
Where are you located Millie? Here's one bit of advice I give to lots of people: Check the Sjogren's Syndrome Foundation site. Look at the connections tab & see if there are support groups near you. Typically, the leader of the group near you will have suggestions about doctors or dentists. I keep a list in my area, because the Sjogren's Foundation refers patients to me, as does my Rheumy. Since you asked about my group, are you near Pittsburgh? If so, please provide me with all of your contact info: Full name, address, phone & email address. I can add you to our database & be sure to invite you to our next meeting.
Take care. This journey takes a lot of patience & support.
SjjoDry (Sandy)
Hi Sandy,
Thanks so much for the info. Exactly what Im going through. For me it feels more like flares but nothing entirely goes away. It's like being sick all the time. Pretty frustrating. I will check out the Foundation page. Im in NY actually, hopefully there's one here. Again, thanks for your advice. Really really appreciate it!
Well, we all want to know about that doctor & what he's developed, how much t works, and, of course, where it stands in the lengthy FDA process. Please keep p us posted.
Just letting you all know I am finally going to see the rheumatologist today. Wish me luck! I will post later & let you all know what I find out. I am praying I finally get some answers.
I, too, have Sjogrens. The doctors put me on Plaquenil to calm it down. Perhaps Susan can ask about Plaquenil.
How painful is the lip biopsy?
I just read your post. It sounds like I posted this. I have been giving my symptoms since December to Rheumo.,ENT. GP Drs.. They all said bloodwork negative. I was so mad because I feel so bad. I have all the symptoms of SS. There is no pill for SS. They treat what ever symptom you have at the time only. I wish there was a pill to cure everything. I just got back from Oncologist He said I have Sicca Syndrome. I said all my blood work is negative "He said that is why I said Sicca". Finally I came home to look up what he said. Yes to me same thing Sicca and Sjogrem's I finally got an answer what I have. I know I have to suffer. I now have thick mucus and burning on tongue and now developed burning in my mouth too. Hate it I was using biotin but haven't for a mouth Every thing getting worse in my body. I can't do anything I just treat every symptoms with over the counter meds. My family feels I am a hypochondriac Biotin use to help with dry mouth not now. I drink all the time water PowerAde everything but it still burns. I feel just like you I don't know what it means to my Rheumo Dr. What she will say. I see her in a couple of weeks Thank you for posting this
A great percentage of people with autoimmune conditions have low levels of vitamin D, the fact that your vitamin D is ok, may indicate that you do not have SS. Perhaps you need to keep investigating
This is the best question. Where to go and what to do? My insurance change this year. So my Rheumo dropped me Just when she was coming up with doing diff things to actually get to m diag. So know I have to pickup my chart and find another Dr. I have been frustrated just like you Now I have a lump in my chin ad going to see and oral surgeon but 4 Dr's says tests are negative. Have patients that is what a great thing that happened belonging to a group that this Good Luck keep going
Hi all...
I truly from the bottom of my heart, feel for you all... I too have been suffering with autoimmune diseases and I have stopped seeing my doctor because of not helping me (I realize this probably was a mistake so I am in the process of looking for a new doc) I have been diagnosed as having Sjogrens (although sometimes my Bloodwork shows it is non existent, it just comes & goes in my blood) I also have other autoimmune diseases (uctd’s) the doc thinks Lupus but not confirmed... I am sick all the time, in pain, extreme fatigue... I am now having new symptoms (that have not gone away) my lymph nodes are swelled (arm pits, throat) my throat is very swollen. I am having problems with my heart (cardiologist says heart is healthy but my autoimmune disease is causing pain & heart palpitations) I am having problems with my kidneys, infections all the time. Severe dry eyes (can no longer see well) & dry mouth ( the roots of my teeth (bottom front) are so exposed that my teeth wiggle back & forth to the point I am afraid they will fall out) I have seizures, the list goes on. I really do not know what to do... my doctor is no help, he gives me pilocarpine for the dryness, he had me on pacquenil (sp?) but it didn’t do anything so he told me to stop taking it (however I have been told that this was stupid on his part) I try to take care of my self, eat well, I don’t smoke, don’t drink, no drugs (except legal prescribed- although I do not take any prescribed narcotics))I keep thin but I get no exercise because I am in too much pain. I am not sure what to do, we do not have any support groups in the area... take care everyone....
I’m so fed up don’t know where to post this and sorry for posting it on your question
I hope ur getting answers and treatment
And sorry you as well as everyone else suffering
I’m 29 year old male
At the age of 19 after accutane
I started having severe dry eyes
Nose
Skin
Scalp
Lips
No saliva when waking but saliva through day
Cold hands feet
Hair thinning and eyebrows lashes fall out
Sleep issues
Hot flashes
Skin rashes on face like rosacea or lupus
To name a few
I was told Sicca syndrome
But the ssa ssb negative
Lip biopsy negative too
Ana is speckled again at 1:160
And igg4 elevated
Vitamin d was always low but is now 37 despite 5,000IU
Avoided gluten wheat dairy u name it
Now I’m afraid of food because of my symptoms
I can’t get any answers too rheum said it’s probably endocrine issues sounds like diabetes insipidous
Because I urinate so much
So sick of no answers
I stopped seeing docs because none helped
I was also told awhile ago thyroiditis and the meds made me lose more weight and I was severely thin
So they told me to stop it and I’m cured
I’m so sick of this and close to just hanging it up
I’m constantly dry and eyes are crusted mucus shut
I’ve tried it all
Now I do blood serum eye drops and nothing helping.
You do need to increase vitamin D. People with autoimmune condition are "resistant to vitamin D". Google vitamin d resistance in autoimmune conditions and see what comes up. There is a new way to go, and even in the UK people are starting to catch up with what other people in other parts of the world are doing, it is a new protocol, and it works. You are fed up, that may be a good thing.. Don't give up looking for an alternative.
Hi Dave
You are having a very rough go. I wish I had an overall solution for you, but all I have is a vitamin D suggestion.
I am the only person in my large in-person support group who has big problems with D levels to such an extent that 40,000IU weekly doesn't help, doesn't matter if D2 or D3 or when/where/how I get it.
A naturopath suggested that I try Micellized vit. D. It's a liquid and you put the drops in about 4 oz. of water. Swirl it a bit & it's better if the water is chilled. I brought my levels up just on 1 or 2 drops daily, checking only once yearly because that's all my insurance allows. I now take 4 or 5 drops most days as there's evidence our levels should be a lot higher than the definition of clinical sufficiency stateside.
Don't give up. We are always here.
I have encountered the same thing. My primary physician tested me and he informed it it was negative so "you don't have it". Outrageous! I have dry mouth, dry eyes, chronic joint pain and neuropathy and have now tested positive for rheumatoid arthritis. My primary said "just continue the spray for dry mouth and drops for dry eyes. I said NO WAY! I want to get to the bottom of it and insisted on referrals. I now have appointments lined up with a rheumatologist, ENT physician and an opthalmologist. Hang in there, Rose and be persistent. By the way, my primary physician is now history as I have lost all confidence in him!