Author Topic: Can't figure out if this is Sjogren's or something else...  (Read 581 times)


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Hi everyone!
I'm new to these forums and possibly have Sjogren's. I'm having trouble getting doctors to listen to me or even test for things. I thought I'd give you my story in short to introduce myself and ask for input from the veterans around here.

I'm a 27 year old student, quite healthy but with a history of sever reflux from a hiatus hernia. I have had three episodes of severe dryness (eyes, mouth, nose, airway etc.) in my life. The first time, it started immediately when I had just begun taking a new medication for acid reflux called Protonix. This was about 2-2,5 years ago Within a day, I had terrible dryness which I had never experienced before in my life. I switched to another reflux medication, and the dryness went away completely within a day or so. About a year later, I had just switched BRANDS of my reflux medication, and suddenly experienced the quick onset of extreme dryness symptoms. I tried switching medications again, but it wouldn't go away. This time, the dryness was accompanied by sores in the mouth and throat as well. Weeks passed, I tried different reflux medications, but the dryness wouldn't leave. Suddenly one evening I had enough and ended up in the ER.

The doctor there thought I was having an allergic reaction to reflux medication and he gave me a one-time large dose of cortisone as when treating anaphylaxis. Within 12 hours the dryness was completely gone, and I was able to stay on yet another new type of reflux medication. I really had NO dryness symptoms left and would often even find I had excessive saliva when eating.

Fast forward another 6 months, to January of this year. I had just had reflux surgery before Christmas, and was starting to taper off my reflux medication when suddenly, the dryness hit again. I could tell that it was getting worse about 2-3 hours after I took my reflux medication, and once again assumed that I was having a reaction to them. At my doctor's advice, I quit taking the reflux medication about 4 weeks ago. But the dryness has not disappeared this time. Since the medication should be out of my system by now, we have started considering Sjogren's as a possible diagnosis... I have negative autoimmune disease bloodwork from about 2 years ago when I  had my first episode of dryness.

Other than the dryness I don't really have symptoms. I have lots of energy - no fatigue whatsoever. Some joint pain when I get cold or sit in a draft but no stiffness or anything. The dryness is very very severe though and during these weeks without medication I have only experienced relief for two days when I had the flu. Once while I was on the medication I had a couple of good days when I switched brands of reflux meds in an attempt to get rid of what I thought was a "side effect" It got bad again after only a few days, however.

I'm not sure it's possible for this to be Sjogren's, but I'm also not sure how it could possibly be a reaction to medication when I've stopped taking said medication...

Been having a lot of stress and depression since I find the dryness symptoms completely unbearable most of the time. I have even had thoughts of suicide, though nothing I ever plan to act on. I am in therapy and am able to handle these negative thoughts quite well.

Do any of you veterans out there with Sjogren's recognize this type of presentation? Can you have Sjogrens with JUST dryness symptoms? And is it possible to have had these "flares" of Sjogren's dryness that has so clearly been triggered by medication in the past - and completely disappeared in between? Have you heard of anyone having typical dryness symptoms just from medications or from other disease?

What types of tests should I be asking my doctor for? And what type of doctor should I see for comprehensive evaluation and help?

Any advice you have for me I'll be happy to hear. Thank you for reading my story!


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Re: Can't figure out if this is Sjogren's or something else...
« Reply #1 on: March 12, 2018, 10:28:02 AM »
Hello, I'm so sorry you are having this stress.

I don't know what the cause of your symptoms is, but I suppose it's possible that Sjogrens is involved, and that you also have reactions to certain medications - two separate things?   However I wanted to ask you what you are doing to deal with the dryness symptoms, as it can make a huge difference if you tackle them while you are waiting for a bit more certainty.   After three years of symptoms I still have no diagnosis, however I find that good eye drops, saline nasal spray, skin moisturisers, Xylimelts at night and chewing gum in the day, can all make things much more bearable.   Others here will be able to suggest more things that could help, and reduce your stress levels.

I hope this is some help.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.


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Re: Can't figure out if this is Sjogren's or something else...
« Reply #2 on: March 12, 2018, 03:43:10 PM »
First I am so sorry for all that you are going through, not knowing what is wrong is actually more difficult than knowing.

Second, if you are really this despondent, which is not unusual when the situation is what it is, I suggest seeking emotional help. Many of us have sought therapy or found a support system to get us through.

Third, it is possible to be sero-negative and have Sjogrens or to start with a symptom and not develop the full-blown disease for some time.

That said dry mouth can have many causes, from meds to lack of humidity to drinking too much water or other liquids (you can wash saliva out of your mouth).

Please keep us posted, we're here to help.

Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

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Re: Can't figure out if this is Sjogren's or something else...
« Reply #3 on: March 12, 2018, 05:04:45 PM »
At times I felt like  nexium made my dryness worse along with other meds like antidepressants. 

Are there any auto immune diseases in your family??

I have Sjogrens, my ANA and sed rate were positive, along with CRP. They did a lip biopsy and that was positive.

I hope this is temporary and you don't  have Sjogrens.    It's a little suspicious that the dryness went away with prednisone............ and worrisome that it might be SJS....  A lot of people get fatigued or have joint pain?

 Come back and let us know what happens.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.


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Re: Can't figure out if this is Sjogren's or something else...
« Reply #4 on: March 13, 2018, 02:34:02 PM »
Thank you all for your responses!

I went to see my optician today and she discovered that my eyes really are severely dry and that it's already caused damage to the whites of the eyes and also mild damage to the corneas. She said she rarely sees this kind of damage in such a short time unless the person has some kind of disease like Sjogren's. So that's some kind of answer, at least, which felt nice.

Also actually was given cortisone for allergies the other day to try again since it seemed to work last time I had these symptoms, but no effect this time.

Still pursuing some kind of diagnosis or answers to what is going on. Agree that it's not a clear case yet, since I really do not have many other symptoms than severe dryness that was VERY sudden onset and also has come and gone in the past.

Appreciate the suggestion to seek out therapy for support. I used to do CBT but for some reason haven't felt up to trying again, but I need to get off my behind and go back to it.

The optician gave me a lot of good things to prevent further eye damage while I await diagnosis, but I'm still at a bit of a loss when it comes to what actually works for dry mouth. A lot of the lozenges and gums etc. are very acidic and give me acid reflux, which is a problem...

Oh and in response to a question above yes there is autoimmune disease in my family! My uncle has rheumatoid arthritis as well as psoriasis, my grandmother had mixed connective tissue disease - both on my mother's side. My mother has many allergies and asthma which I guess is not exactly autoimmune, but I have inherited the allergies from her.
« Last Edit: March 13, 2018, 02:37:34 PM by Ellie »


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Re: Can't figure out if this is Sjogren's or something else...
« Reply #5 on: March 13, 2018, 02:48:50 PM »
Hi Ellie,

Even with Salagen (20 mg day) my dryness goes through phases, and is sometimes very difficult, especially at night. 

It is always painful to open my eyes when I wake at night, so I have a spray next to the bed: Nature's Tears.

Our eyes always dry out when we sleep since when our eyes are closed, the eye suffers oxygen deprivation.   One reason we get 'sleep stuff' in the corners of our eyes.

My mouth is always very dry, even with the Salagen.  I cannot imagine life without Salagen. 

If the dryness persists, then you should ask for an RX for either Salagen (Pilocarpine) or Evoxac (Cevimeline).  For some weird reason these two medications are the most expensive RX I've ever taken.
But I can't live without one or the other.

Since you don't discuss joint pain, fatigue, or brain fog, you won't need to consider the more 'serious' Sjogren's Syndrome medications (Plaquenil, Methotrexate, or one of the monoclonal antibody infusions) YET.

Don't worry about Sjogren's.  The vast majority of those who have this diagnosis live uneventful lives (well, related to this diagnosis) and treat the 'dryness' and forget about it.

We who post here are among the few with complex Immune Disorders, so don't let our discussions and experiences scare you.   Take what you need, and leave the rest.

My eye dryness, by the way, came on suddenly, and I was wearing contacts at the time.  By the time I saw my doctor, I had severe corneal ulcers, and was lucky to suffer no lasting damage.  I did have to give up contacts and go to glasses, which bothered me the most!

Keep us posted and welcome,

Regards,  Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil