Worried; lots of questions, advice greatly appreciated!

[Deseree]

Hello everyone, I have not been diagnosed but have been having symptoms that make me wonder if I have Sjogren's. Everyone here seems very helpful and kind and so I wanted to ask some questions that I can't seem to find the answers to anywhere online.

I am a 30 year old female, and until recently have been quite healthy and active. Three weeks ago, I started having moderate headaches every single day. Then, about two weeks ago, the headaches stopped suddenly and were replaced by a bizarre taste in my mouth for about 4 days. It almost reminded me of plastic, or latex, or something and I would wake up each morning with a very dry mouth and throat. As the days passed, the dryness simply stayed throughout the day, and now, two weeks later, my sinuses and nose are completely dry. My eyes itch a little bit every so often now too, but the dry mouth and nose/sinuses are the worst. It is worse when I try to talk, and even though eating and chewing gum helps, it still doesn't feel normal.

I went to my doctor and had a basic blood test and the sedimentation rate and ANA tests, everything so far has come back normal. My doctor said that in younger people, having Sjogren's usually produces more strongly positive test results than in older people and that I probably do not have it, but I am confused as to what other conditions could cause this host of symptoms if it isn't Sjogren's. I am really scared and just don't know what to do. My questions for you guys are:

1. Did anyone here basically just wake up one day and Bam! your symptoms started? Or was is a slowly progressive thing over years?

2. For those of you who have had this condition a while, does it get worse over time or does it basically stay the same as when you were first diagnosed? I know these things can be variable, but I would like to hear the general consensus.

3. My biggest fear is that my salivary glands will just completely shrivel away and that I won't be able to talk or eat normally, kiss my husband, or get relief. I was wondering, does everyone here at least still have some ability to produce saliva, or is it completely gone? And do either of the drugs that increase salivation really work? For those of you who take either of those medications, does it help a lot? Or does it basically just take the edge off? I would be relieved to hear that there is something that can make your mouth feel normal again.

Sorry for the long post, I just feel like I'm losing my mind not knowing what is wrong with me!I'd like to find out if there are ways to actually manage this so it doesn't dramatically decrease quality of life. Thanks for reading.

[Franky]

Hey i am in the same place as you are exactly but i only have a sore throat symptom . So i will answer those questions with my little to no experience .

This is my personal opinion and what applies to MYSELF , others may experience different symptoms/reliefs.

1.Yes it happened suddenly . I started feeling dry mouth one day then the next i was fine . This went on for couple of days (max 1.5 week from what i remember) then it became a permanent thing .
2.Two years has been since my dry mouth and it hasn't worst it's the same . No other symptoms as well.
3.Over the counter drugs such as sprays etc won't do shoot (excuse my language) they just relief you for some seconds-minutes and that's it . It's a waste of money in my honest opinion.
As said i am on the same path as you are at this point and i am looking to start taking Ubiquinol  (supplement) which helped a lot of people remove the dry mouth symptom (it increase saliva production) so looking to start it asap. See here https://sjogrensworld.org/index.php?topic=31341.0 .
As far as medication pilocarpine is what's prescribed for dry mouth /dry eyes . It's a prescription drug with side effects and since i am only 24 i want to take the Ubiquinol  path first before going heavy with prescription meds.

Hope i helped you with my little to no experience . I would love to learn more from you if you find any ways to counter the dry mouth symptom since it's driving me crazy as well .I had 3 beers yesterday and my mouth today was feeling so so bad so i completely understand how you feeling.

Best of Luck.

[Carolina]

Yes, Deseree,

I started with dry eyes suddenly in 2002.  I had erosions of my corneas from my contact lenses because I didn't have enough tears, which is dry eye. 

That meant I could no longer wear contact lenses.  In a few months I also noticed my mouth was dry.

I started on Pilocarpine for mouth dryness, and it helps a bit with my eyes as well.  But in the 16 years since I first developed symptoms they have gotten worse, I'm sorry to say.

Fear doesn't help, of course.

The best course is to find a good rheumatologist who will measure your dryness and then prescribe the RX that will help your SYMPTOMS.

Treatment of symptoms is the best course of action, often for many years.

Welcome to our group, Deseree.  We are all different and what you read here may never apply to you.

Keep us posted.

Regards, Elaine

[Navigator]

Hi

What I would do is create a file/get a notebook...anything and every day write down your symptoms that you had that day.  Then when you go to the doctor you have something substantive to show him/her.

You may very well not have SJS.  Many autoimmune diseases have overlapping symptoms.  Some drugs and supplements can cause dryness symptoms also.

Try eliminating all drying things like alcohol, caffeine, alcohol containing toothpaste/mouthwashes etc.....use those specified for dry mouth...drink loads of water. 

If you can,  document the dryness factor.  If you have an eye doctor they can do a test of your tear production with those little paper strips.  Not an optometrist...and ophthalmologist. (Schrimer test)

Your dentist would have an opinion on your saliva flow. Often just by looking. There is a test for it as well which would perhaps be useful for you and make you feel better if you knew what it was.  I never had it as my symptoms declared themselves and there was no doubt what I had. My bookwork confirmed it.

I take Evoxac and have seen a difference in my eyes and saliva. It is prescription. Been on it for 14 years.

Even if this is SJS for most people the  Sjogrens does not alter their lifestyle or life.   You have to accommodate it ..sure.. but it is not for many life altering.   Realize that the people that post on this site are a self selected group and could be those with more daunting symptoms but that a majority does not make.    I have lived well with Hashimotos Thyroiditis from the age of 27 and SJS from the age of 49. My biggest complaints have been fatigue and gut issues. 

Keep in touch.

[Deseree]

Thank you for your replies, it helps to actually here from people and know I'm not alone. I am trying to cope with all of this and the fear is really getting to me. I'm a grad student and just getting ready to really start my life and I feel like I've been stopped dead in my tracks.

Does the Evoxac or Pilocarpine help a lot or just a little? I really just want my mouth to feel normal again 

[Spring]

Welcome to our forum, Deseree~

I agree, it could be something else to cause your issues, but it never hurts to be well informed and learn about all kinds of things.

I was diagnosed on symptoms only, over the years, and I am/remain seronegative. My original rheumy said she had no doubts, saw no real point in doing a lip biopsy back then(1999), and treated my actual symptoms. Been doing that for almost 19 years now, wow. Over time, not a lot of change really. By the way, when I finally went to a rheumy, I was advised as you were here, to make a list and take it in; I also had neuro probs, and was first dx with mild MS, but got undx from that so neuro is who sent me to rheumy. It helped the doctor to know all those things.

First I was using the salagen tablets. They helped a lot, but take one, it helps an hour or 2, then dry again, wait for next tablet, repeat. but hey, they are pretty cheap and do help.
When Evoxac came out, I got a 30 free trial, and have not looked back. It is a life saver for me as to feeling near normal. I take the generic that is out now, but it is real expensive.

Keep searching, and do not worry it will get horrible, chances are more likely it will NOT.

Jo/Spring

[Carolina]

Does the Evoxac or Pilocarpine help a lot or just a little? I really just want my mouth to feel normal again.

We always talk about "the NEW Normal".

IF  you have Immune Disorder(s) they cannot be cured (in almost every case).

Symptoms can be treated, which is what Evoxac and Pilocarpine do.  However, I am always aware of a certain amount of dryness, especially at night, even on the maximum amount of Pilocarpine per day.

So, I have a New Normal.  It isn't like the Old Normal, when I didn't think about dryness at  all.  But it is better than life without Pilocarpine.

Truly, take it one step at a time.   

You wouldn't refuse Evoxac or Pilocarpine because they won't make you 'all better', only noticeably better, would you?

You can always start and decide to stop later on. 

I will note, that it some times takes several months for improvement to show up with Evoxac or Pilocarpine.  In my case, I noticed major improvement right away.

We're all different.  NO ONE will have all the answers for you, Deseree. 

In most cases, we all learn to live with the "new normal".  I mean, what choice do we have?

Regards, Elaine

[Cheryl]

Deseree,
In my experience, both of the meds you asked about help substantially.  I take Pilocarpine now, but I've used Evoxac in the past.  (I only changed so that I could have 4 doses per day vs 3 per day of Evoxac.)

They are not time-released, so I'm always ready for the next dose before it's due - to the point of watching the clock sometimes. I know that my greatest relief from dryness will be in the first 2 or 3 hours after taking a pill.  If I know that I will be singing, speaking publicly, etc., I plan the timing of my dosage to accommodate that. (Yes, I've planned the timing for kissing before, too!)

The new "normal" isn't ideal, but you will adjust to it!  You may choose to carry a bottle of water around.  There are many over the counter products that are supposed to help, too.  I don't like most of them, but I do recommend Act Dry Mouth Lozenges. 

Best wishes
Cheryl 

[Pete0211]

Hi Deseree,

I had a sudden onset of dryness to welcome me into this fun, too. Took about 10 days before I was able to start getting it under control and able to sleep a few hours with some pilocarpine and a few doses of corticosteriods. It took about six months before I was back to a somewhat normal routine and able to get 7-8 hours of uninterrupted sleep.

I'm two years in now, and am still negative on all tests other than Shirmer's. I still take evoxac daily (though there are times were I just take two per day vs. three), and use restasis for my eyes.

For Pilocarpine vs. Evoxac, it's been my experience that Evoxac provides a more "natural" feel to my mouth through most of the day (from dose to dose). With pilocarpine, I'd get a rush of saliva for a short time - almost too much, then would be dry again until the next dose.

[whatnow]

I had both slow and sudden onset of symptoms. Looking back, with hindsight, I was told by an ophthalmologist long ago that I had dry eyes, but I never felt they were a problem except that I have NEVER been able to wear contacts. They would stick to my eyes within 60 seconds of putting them in. My mouth became drier over a period of years, but, again, I just thought that must be normal. Then one day I was applying foundation make up and noticed my jaws were sore. It happened overnight and never got better. It does flare when they spasm or seize because I eat or even think of something sour like orange juice or tomatoes. So, for me, while I had symptoms I wasn't aware were symptoms, my one biggest symptom to date did come on overnight. Best with your continued search for answers.