Diagnosed w/ PSS only by blood tests

[Kararific]

Since August 24 I have been in the biggest flare since being diagnosed in 2011.

I?m in such bad shape I?m wondering if I could have another AI (or something else) in addition to sjogren?s syndrome or maybe not even have sjogren?s syndrome.

I saw an ENT for an infected, blocked saliva gland. At the time my mouth was so dry, I humored myself and family by eating crackers and then blowing them out of my mouth like dust. (side story: Yes, weird and strange. Telling this story reminds me of what a fun person I was. Was. I haven?t felt fun I?m years. I?m a grouchy woman in pain everyday. That sucks.) On with my diagnosis... to ?eliminate some possibilities? the ENT had me do blood work. BAM! They tell me I likely have Sjogren?s, go see a rheumatologist to confirm.

Rheumatologist did blood work and confirmed. That?s it.

Eyes: Within a year or two I stopped wearing contacts. They were never comfortable for more than 12 hours but time I could tolerate them reduced until I gave up. Wearing glasses daily I have absolutely no dry eye symptoms.

Mouth: the worst dry mouth I had was before I was diagnosed. I haven?t been able to ?blow crackers since?. 2-3 times a year my mouth gets dry and I get cracks in the corners and I carry water to sip. I also keep Xylimelts on hand but only used them 3-5 times a year at most. I haven?t had a single cavity since being diagnosed.

No schimer eye test, no lip biopsy, just blood work. I remember SSA+ and SSB+ and Sed rate being high. Probably others but I don?t remember and I?m on my phone, in bed.

So, thoughts? How many have sjogren?s syndrome and very mild sicca? What?s the likelihood of not having sjogren?s syndrome and having something else?

I?m in a waiting period to see my rheumatologist. She had a family crisis/emergency back in May and left the practice (her son has AI?s). She?ll be back in November.

[Maria3667]

Hi Kararific,

Maybe your age could shed some light on this? Are you in menopause, do you use the birth control pill, are you on HRT?

I'm happy to help you find some answers.

[lizk]

Hi Karaific,

I'm so sorry to hear that you aren't feeling well and are experiencing pain. That would make anyone grumpy. I hope you have some compassionate people in your life who can lend you some support. If not, make sure you do something nice for your Self every day! We are our own best advocates. I'm glad you reached out to this community. There are lots of supportive people here with a ton of knowledge.

I was diagnosed by bloodwork in 2010 when I was 29. I have off the charts Primary SS antibodies. My initial symptoms for SS were not typical: constant yeast infections and lots of digestive issues. My gyno told me something was up with my immune system by having these constant yeast infections. I ended up seeing a hematologist (after my primary ordered blood work and my WBC was VERY low) who asked me point blank: do you have dry mouth and eyes? I said nah I'm thirsty a lot but that's it. (Turns out that means, yes, I have dry mouth! My other symptoms were so bad that I didn't really register the dry mouth.) I think he ran a full autoimmune panel and my SSA was sky high. I don't have a lot of other markers aside from leukopenia. I think at times some of my liver enzymes and IgM have been a bit off. This has been consistent throughout the years. I also moved last year and saw 2 new rheumatologists who confirmed the dx via bloodwork, no other tests necessary.

But, I remember taking Evoxac for the first time and feeling the saliva enter my mouth. I couldn't believe how much better I felt. At any rate, I've had one cavity and that's only due to grinding at night, not saliva deficits.

Now I'm on Plaquenil (200 mg/day) and Evoxac (30 mg/3x a day). I also have secondary Raynaud's (5mg Amlodipine 1x/day).

Anyway, I have Primary SS and mild sicca. I'm 37 now, so my age is on my side. I have a feeling menopause will bring out the SS a LOT.

I think Maria3667 asked some good questions about your age, menopause, hormones. Those play a big role with SS.

Keep seeking treatment from rheumatologists. Why not get a second opinion?  Flares are notoriously horrible, but you may as well investigate if you do have other AI stuff going on.

I wish you all the best.

Liz

[irish]

Actually, a person doesn't have to have all the dryness symptoms or other symptoms all at once. If you have the positive blood work and a few symptoms it is just the way it is for you. I had symptoms of Sjogrens for over 35 years but didn't get dry eyes until several months after I was diagnosed in 2003. I also had a midly dry mouth all those years but never thought to even tell the doc about it. About 20 years down the road I started having cavities and abscesses and ended up with thousands of dollars of dental work over about 15 years and finally had rest of teeth pulled and got dentures. I still am dry but not as bad as many people.

You just have to keep track of anything that seems different or new for you. I have lots of trouble with tendonitis and it really can be miserable. Digestive issues also sneak up on most of us and are related to Sjogrens. Arthritis and lots of aching can come and go. Also, with Sjogrens and all autoimmune disease thyroid issues can crop up and need attention. We have to take it one day at a time. We are all different and this is what confuses the doctors. If we all had the same symptoms it would make his job easier. Good luck, irish

[Kararific]

Thanks you for your replies.

I am 42, haven?t been on BC until earlier this year I got the Mirena IUD. No to the HRT.

I was ?living with? Sjogrens until August and since then my quality of life has greatly declined.
Intestinal issues, fatigue,  muscle spasms and cramps everywhere, palpitations, dizziness/lightheaded, neuropathy symptoms have increased... I have narcolepsy and my medical aren?t as effective either.

I?m researching and wondering what the heck is wrong with me and why did all of this start? It is just PSS or something additional or something different all together?

[araminta]

Kararific - in the six months or so before this flare, did something very stressful happen in your life?   Just wondering as that can cause autoimmune issues.

[Linda196]

It is just PSS or something additional or something different all together?

Please don't be mislead by the word "just", whether thats what our doctor says or the way you are thinking about it. PSS on it's own is enough to cause all the symptoms you mention, and sometimes quite severely.

Having said that, some of the symptoms mentioned could be a result of vitamin and/or mineral deficiencies, particularly the muscle spasms and cramps, palpitations and an increase in nephropathy problems. Has our doctor checked Vitamin B12 and D, and Potassium, Magnesium and Calcium levels? These deficiencies aren't uncommon in PSS, or any Autoimmune disease.