Too old for Sjogrens?

[annabelle]

I am 66 and  I haven't been diagnosed with SS. I'm trying to get an appt. with NYC rheumy.  First  rheumy dismissed my symptoms and said she could not do anything for me.  ANA came back high, have excruciating wrist pain and swelling, dry eyes, parched mouth, etc.  My ophthamologist dx me with cornea erosion -  have pain opening my eyes in the morning.  He felt I was past the age of being dx with Sjogrens.   Is this true?  My eyes and mouth have been dry for years, but never thought too much of it until my wrists and eyes became so painful.  Has anyone else been diagnosed around this age?

[Scottietottie]

Hi Annabelle 

Welcome to Sjogren's world. People get dxd at allsorts of different ages and many have years of pain and discomfort before they get diagnosed at all. With or without a diagnoses it is important that the symptoms you are experiencing get acknowledged and treated!
I hope you get an appointment with a rheumy soon! Meanwhile anti-inflammatory pain killers and OTC eye drops and mouth moisturisers may ease things.

Take care - Scottie 

[KellyG999]

Hmmm... just because doctors have failed to diagnose you properly doesn't mean you can't have sjogrens. Heck, you may have had it for years and years.

I don't trust those "sweeping generalizations." I think they are a load of BS! Kind of like: You look too good to be sick. Hmmm!!

Good luck and take care. Lots of docs out there!

KellyG

[quilt4fun]

'past the age of being diagnosed"...?! if I hadn't been persistent- I wouldn't have been diagnosed at the age of 62.  Please keep trying to get an appointment with a different rheumy.  I had seen 4 different doctors - eye, kidney, GP,  rheumy --none of them believed all my symptoms as being connected until  I saw a rheumy that was aware of Sjogrens.  Now, I'm the one educating the doctors.
   There is help and I don't believe that one can be too old to start of medication to relieve all these symptoms. 
      Dry eyes can be helped with OTC Thera Tears liquid gel---use as many times as you want.  They stay in my eyes longer than regular eye drops.
     Biotene products can help with dry mouth issues--also OTC.
     
    There is a lot of help on this forum, just ask away--
    We are all here to support each other.

[susanep]

It doesn't matter what age you are, because you are hurting and have a right to get some help to not hurt when possible. I can't stand when someone is told that.

If you are too old to be diagnosed with sjogren's then you are too old to have pain, too old to have to pay a doctor or dentist etc. anything........lol........

You deserve better than that. 

susanep 

[Meld256]

Wow, that sounds as if the opthamologist has limited knowledge of Sjogren's.  I love what susanep says;  you deserve better than any doc dismissing your pain and symptoms because of age.  People are diagnosed at all different ages, so it makes no difference.

I hope your appt. with the rheumy brings you some hope and help.    Keep us posted, please.
Melinda

[annabelle]

Thanks everyone for your replies.  I did think I had arthritis due to age which is why I went to first rheumy, but then ANA came back high and I started putting together the dryness and vision problems and began to think they were conneccted.  I know I complained to another ophalmologist at least 15 years ago that my eyes were painful when I woke up in the morning and for years my dental hygenist has commented on how dry my mouth is, so it is not all of a sudden.  The first rheumy never even  examined me or asked if I had dryness.
It is very discouraging.

[Joe S.]

You may want to look for another doctor.

[eyeamdry]

Many eye drs (both optometrist and ophthalmologist) are quite ignorant of dry eyes.  This isn't a big money maker for eye docs and requires lots of chair time.  An ophthalmologist can probably make $4,000 doing Lasik in the 15-20 minutes he would take talking and testing dry eyes.  That $$$ is paid in cash, no insurance involved, paid before the procedure etc.

This is not always true, but many optometrists are better in dealing with dry eyes because they specialize in this or have a particular interest in it.  It might help to get a referral from your GP, a relative, friend etc.  Lucy

[4Kids]

You may want to look for another doctor.

I think I would, and I would persist in finding some prescriptions for things like Plaquinel, Restasis and Salagen/Evoxac. You need relief from symptoms.

[Carolina]

Wow annabelle,

You've probably had Sjogren's for a long time.

sigh.

There is no too old.   That is the silliest thing I've ever heard.

That doctor doesn't know anything about Sjogren's.  PERIOD..

Well maybe a few things you could get from a simple overview, but clearly not in any depth.

This is from Wikipedia.

Nine out of ten Sjögren's patients are women[4][5] and the average age of onset is late 40s, although Sjögren's occurs in all age groups in both women and men.[citation needed] It is estimated to affect as many as 4 million people in the United States alone, making it the second most common autoimmune rheumatic disease.[4

One thing that many doctors don't understand is that Sjogren's 'can be' part of a constellation of syndromes that can be co-conditions of the basic dryness condition.

Most studies show that 50-75% of those with auto immune conditions have profound fatigue and degrees of depression as CONDITIONS of the diagnosed AI condition.  That means they are PART of the illness, not a result of the illness.  It is an important difference. 

If you are among those 50-75% you may experience overwhelming exhaustion for no apparent reason.  Or sadness that you can't explain by experiences.   Both are probably caused by imbalances in the biochemical systems in your body.

Rest and waiting is about all you can do for exhaustion, but I believe that prednisone and perhaps plaquenil can both relieve exhaustion.   Others here know more about this than I do.

Sadness and depression may be helped by the right anti depressant, but finding the right one is a trial and error process.

You will want to be alert to how things are affecting you, I would suggest keeping a diary of how you're feeling physically and emotionally.

Welcome, again.

Hugs

Elaine

[Patze]

Hi Annabelle,

I'm with the others, please seek another opinion if you possibly can.  In my humble opinion, that doctor is wrong.



Patze

[Cheryl]

If he were correct, wouldn't all of our symptoms have to go away by age 66???  I'll be there in a few years, and I wish I could appear for a checkup then and be told I'm too old for Sjogrens!

Hang in there, Annabelle, and best wishes in finding a doctor who will treat your symptoms!

[Bucky]

Hi Annabelle - welcome!

As the others have said, Sjogren's knows no age, nor gender.  We've had a young gal age 4 at the time (several years ago) diagnosed with Sjogren's!! 

Also as you mentioned, many of us have had varying symptoms for years - thinking they were "normal" . . and finally put the pieces together.

It seems any more that doctors only specialize in one thing . . . eyes, mouth, ears/nose/throat, etc.  Granted some symptoms by themselves don't mean a whole lot, but if you put them all together for the BIG PICTURE - it does help solve or explain everything.  Many of us have been in those shoes!   

There are several members in the NYC area.  Maybe they could offer you some suggestions of a doctor to see.  Or, maybe you could Goggle - Sjogren's Doctor in NYC - and see what comes up.

Several of our members go to teaching hospitals.

Bucky