not officially diagnosed yet - but lots of questions

[cranberry]

Hi everyone,

This is my first post here.  I have not been diagnosed with Sjogren's, but my rheumatologist suspects it might be possible.  I see her again in November, but I was wondering if I could ask some questions here.  This is all very new to me.

1)  The rheumatologist ran a lot of blood tests, which came back negative for Sjogren's (and lupus).  Is that typical?

2)  I don't have dry eyes, but I have dry mouth sometimes.  Usually it's first thing in the morning, when I wake up, and I drink water but feel like nothing quenches the thirst.  I'm having a hard time differentiating what might be a Sjogren's symptom and what is just general dry mouth or thirst.  I have diabetes in my family and am checked for that regularly (one symptom is excessive thirst), but so far, my labs don't indicate diabetes.

3)  One thing that made the doctor suspect Sjogren's is a reddish/pinkish rash around my mouth.  I have had it off and on (mostly on nowadays) for over a year. I have been to an allergist, but we have not pinned down anything specific that could be causing it.  I avoid toothpastes with fluoride and SLS, but that doesn't make a difference.  I only use aphaphor on my lips, wash my face with warm water only, and I don't wear any makeup.  My doctor said she has some Sjogren's patients with this rash and for some, it's the only symptom.  Has anyone had this experience?

4)  I'm also constantly - constantly! - having to clear my throat.  The allergist said that this could be from seasonal allergies and I'm also allergic to dust mites.  I replaced 90% of the carpet in my house with cork flooring and done more things to get rid of allergens, and it helped for a while, but now I am back to square 1.  The only thing that helps is Claritin and it only helps for a few hours.  She said that some people with Sjogren's have this too, but since it's responding to allergy medicine, it could still just be an allergy.  I'm wondering if anyone else has this, too.

Thank you so much for reading my long, rambling post.  I am trying to get more information before i see the doctor again in November, but I'd like to learn more from people who are going through it. I'm looking forward to reading the threads here and educating myself. 

Have a good day!

[Joe S.]

Welcome to the forum. You can have Sjogren's without it showing on a biopsy or in your blood work. For me after 7+ years I asked my third Rheumy, "dry eyes, nose, mouth, skin and A$$, what do you think it is?". He said, "Sjogren's / SICCA". Diagnosis is done by elimination, so it may take 7 to 12 years. Good luck in finding your path to management. 

[cranberry]

Thank you so much, Joe!

[Kathy57]

Dear Cranberry,

I also am constantly clearing my throat and it can get so annoying. I also can lose my voice and become hoarse easily.  I was treated for allergies for years and I assumed that this was all a part of that.  However, I finally went to an Immunologist who did extensive allergy testing on me, and guess what??

I don't have a single allergy!  Not one.  So all of this thick, dry post nasal drip that is so annoying is caused by my Sjogrens.  I take Evoxac three times per day and NAC twice per day and it helps some.  I also take a 12 hour mucous thinner that helps some.  Of course I drink plenty of fluids.  I used to sing in a choir but can't do it now.  I think the constant clearing of my throat is caused by extensive dryness from my sinuses.  I also cough up thick globs of Phlegm in the mornings.

Not very lady like I can tell you.  And not at all fun.  Some days are better than others.  I also use a saline nasal wash twice daily and it helps clear the area and keep a little moisture in.

The things that make our lives so annoying!😡

Carry on!

Kathy

[cranberry]

Thanks so much, Kathy.  Maybe I need to see my allergist again for more testing.  i really thought the throat clearing was related to the dust mites, but I don't think so anymore.  She prescribed Flonase, but that doesn't help at all.  A lot of times I can't sleep at night because I constantly need to clear it out.  Yuck.  Oh well.   I will keep plugging away at finding an answer.  I appreciate your help!

[trejonina]

AI diseases have siblings. SJ,Lupus,RA etc. I was diagnosed with RA at first, but I already had undiagnosed SJ.For 4 yrs I took minocyclene, then  doxicyclene 100mg on alternate days. I'm off them right now, taking turmeric. This treatment has an acquaintance with lupus in remission. She takes doxi twice weekly now.

[cccourt1942]

Hi Cran,
    I 've never had the rash which you describe...but have had "dry" lips (unbearable) for at least 25 years.  First 5 years used Blistex and Carmex...then realized my lips weren't "chapped."  Looked for balms..had too much medications in them.  Went thru about 10 years of rosacea and used the topical cream (OTC) on lips too.  Eucerin.  It worked somewhat.  Then they ramped up..discovered an aloe vera balm which soothed them.  No longer made.  You can find an aloe balm on Amazon...Miracle.  I use it now.  Again..lips never had a rash.

   Re clearing of throat: I'm a retired speech therapist (SLP).  Last years of employment all SLPs worked on Fridays together. I had 6...SIX SLPs who diagnosed me with a tic.  I knew I didn't have  a tic.  I just had a glob of something in my throat.  Non productive I'll add.  Nearly 10 years after retirement was dxed w' SjS.  Pilocarpine helped but didn't solve all throat issues.  My GP told me about Mucinex and why we Sjoggies use it.  Even if some old, thick mucous comes thru a duct, not usually enough saliva coating our esophagus for it to go on down.  Have to thin the stuff.  It works.  You've already had someone give this OTC cough med.  I'm seconding: It works.  After you get on meds for oral dryness, it improves dramatically.  I still have days I am aggravated.  If I'm out and about I keep Biotene Oral Gel with me...a little dab of it with about a tablespoon of water will coat the oral cavity and will calm it.

good luck..and welcome.
ccc

[warmwaters]

Some more avenues to look down. 

The throat clearing can also be related to acid reflux.  It can occur independently, or as something that occurs as part of autoimmune disorders.  Usual treatment is something like nexium.

The dry mouth can be tested. They can determine at what rate you are producing saliva on your own, then use something like lemon juice to see how much you produce under stimulation.  It's an easy test. If you are not producing the norm, it's another sign that your dry mouth isn't just "in your head".

People can have autoimmune disorders without having the positive test results. It's called seronegative. This can also change over time. I started out with lots of positive test results, but 8 years later, my blood tests don't show anything that indicates Sjogren's. And yet, several doctors are very confident that's what it is.

Just to cheer you up a little, Joe S mentioned it might take a long time to get diagnosed.  While that's true, the average time for a Sjogren's diagnosis is coming down, due to an extensive campaign of educating doctors.  So these days, it may be more like 3 years.

Do you have any pain (joint, muscle)?  That can be another clue. Same with fatigue - any issues there?

Keep talking with us. We've been through it...

[cranberry]

Thank you all so much!  I really appreciate your taking the time to help me figure some of this out.

I'll give Mucinex a try to see if that helps with the throat clearing.  The rash is strange because it's around my lips, but my lips are okay.  The rheumatologist suggested an RX medication called Protopic to use regularly, but there's all kinds of insurance red tape going on.  I need to get to the bottom of that.

As for fatigue and joint pain - yes!!! 

I have had a herniated disc in my neck for many years, since at least 2008 but possibly 2004.  I've had lots of physical therapy for it and have a home traction device for when it flares up. But this year I started having more pain in my elbows and hands.  Also my C reactive protein and sedimentation rates were high.  This is why my primary doctor sent me to a rheumatologist.  She ordered an MRI, which showed more extensive herniation and protrusion along with a lot of arthritis.  She also said I have arthritis in my fingers.

I am taking naproxen for all this, but try not to take too much.  I saw a physiatrist who recommended more neck traction - luckily I can do this at home.  And while that seems to be helping with the pain, my hands are my biggest concern right now.  When I wake up, they feel strange.  I won't say numb because I can feel pressure if I touch something and I can feel hot and cold. But tingly and weird.  I think this is because of the disc herniation affecting nerves in my arms, but I'm not sure. Sometimes my fingers are swollen. Over the last few days, the tingly feeling has subsided somewhat during the day, but they always feel strange now.

I just wish I could get this figured out.  Thank you again for your advice!

[Carolina]

Welcome cranberry!

Diagnosis often takes years.  Years AFTER you have had all the symptoms, but no diagnostic indicators.

We are here for you.

I had all the symptoms of several autoimmune conditions all of my life, and it wasn't until I was 71 that my actual Immune Disorder was diagnosed, because I DID have the indicators (biomarkers) for Immune Deficiency.

Just treat the symptoms, that's the best idea.  We are all so very different from other 'normal people' and also from each other

Take what you need here and leave the rest.

Regards, and welcome again.

Elaine