Recently Diagnosed with Sicca .....

[katie3]

Hello all..
In the last month I was diagnosed with Sjogrens.. Ive been reading about it like crazy.....Ive seen so many posts and sites that are so scary...... I am so frightened. This looked like a very positive site. I'm trying to be positive but it is tough. I have a terrible dry mouth ( making it so hard to talk at times ) IM REALLY SCARED !! I started Salagan 18 days ago and am feeling a some little but it is inconsistent.
I HOPE IT GETS BETTER... I am positive SSA ..... all other test normal  very low ESR and CRP. My Dr, wants me to have the lip biopsy to know for sure. I know it would not change treatment but may change monitoring . Any input  ( hopefully positive  ) would be appreciated.


Hugs to all.......

[Joe S.]

Welcome to the forum. You can live a long life with this disease. It does take a bit to learn to manage symptoms for some people. Management is the key to how well you will do with it. Simple things like:

Don't panic.
Breath through any pain.
Meditate
Sip, swish, then swallow. (water)
some of us have posted what we are taking in our signature. Before trying anything, check for side effects, drug interactions, and counter indications.

I would not choose to have a lip biopsy.

Good luck in finding what works for you.

[Navigator]

Hi

My tests are much like yours. First of all realize that the people that tend to post are those with more severe symptoms.

Many people with SJS are able to live relatively in harmony with it.  The fact that your ESR and CRP are low/normal is very good.

I have had SJS for over 12 years.(I had thyroid disease for over 40)  I take several meds a day and have had issues with my teeth but I am living a full life.

No one wants an illness that will be with them for the remainder of their lives but it is possible to do well with this.  I even sing in a choir ...dry mouth and all...I have a water bottle.

Look at the tag lines on our posts to see what we take.  Make sure you have good doctors and take time for yourself.   You may find that while it is not ideal to have to take meds ..life does go on and it is good.

We are all here to support you in your journey with this disease.  Just stay in touch.   Its like pregnancy ...my youngest is now having a baby and I told her NOT to read all the pregnancy books because one would wonder how any of us were born with ten fingers and toes not to mention all the other thousands of things that can go wrong. ...Stay positive.

[katie3]

Thank you for your positive, supportive words... Honestly, it is just what I needed today !!!

Katie

[Liz D.]

Katie3,

I feel your pain when it comes to dry mouth!  That is one of my worst symptoms of Sjogrens.  A couple of tips:

1.  Use Biotene products for dry mouth.  You can get them at most drug stores, Walmart, etc.  Amazon also sells a mouth spray called Med-Active that helps immensely (at least for me.)

2. If salagen doesn't do the trick, you may want to try evoxac (cevimilene).  It is another prescription that can stimulate saliva.

3.  If you already have been diagnosed with Sjogrens and have a rheumatologist, there is really no need for a lip biopsy.  That generally is done only to get a diagnosis.  And if the biopsy is not done properly, you can have a lot of unnecessary pain.

4.  Try to find,  if you don't have already, a very understanding dentist.  In my case, my dentist is the specialist I see most often!  Try to take meticulous care of your teeth the best you can.  If you don't have dental insurance, look into it.

5.  Like Joe said, relax and take a deep breath.  I find the more stressed I get, the drier and sicker I feel.  I'm much better when I take things in my stride.  I still live a full life, albeit dry ?

6.  A water bottle will become your best friend! 

You will get through this.  Keep us posted and use this site a lot. It is a tremendous help!

Liz D.

[Carolina]

Welcome Katie!

Keep posting, we're here for you.

Most people with Sjogren's do not progress in their disease.  Most of those of us who post here are in a very small minority of people who have complications from their Immune Disorders.

Relax, and as Joe S. says, remember to BREATHE.

Ask all the questions you have.   When you read here, take what you need and leave the rest.

Regards,  Elaine

[katie3]

Thank you for responding !!! I started the Salagan three weeks ago.. It is helping a little but the effect does not last very long.I have read that is can take a while for the full effect ? I am contemplating the lip Biopsy.. I went to a Rheumy for a second opinion and he thinks I should have it done. It is clear to me that I have Sjogrens... positive SSA, dry mouth, dry eyes. The first rheumatologist was highly recommended as being very good... however , she spent about three minutes with me and gave me a brochure on Sjogrens. She ordered many, many test...... the only positive marker that came back was SSA.. I have had symptoms for about 4 years.. This is all so new to me. One DR called it Sicca syndrome, the other Sjogrens... ? is there much of a difference ?
I saw an oral pathologist for tongue sores and very tender sore roof of mouth.. He said geographic tongue. I am using a steroid/ anti fungal cream which seems to be helping a little... Salagan was the only medication prescribed... does that seem typical ? I don't want to take anything unnecessary but want to be certain that I'm doing what I should...... I really hope my dry mouth improves... I'm so bummed..
I went out to dinner with family last night and could barely speak...... part of it was mouth soreness and the other dryness... I know I seem to be rambling but I am so happy that there are people on this forum who care and understand !!!!!! THANK YOU
One last thing.. I am soooooooo anxious , I am having trouble sleeping,, any suggestions would be appreciated...


KATIE

52 female, Primary Sjogrens  Salagan 5 mg 3x daily, Biotene spray, gel and toothpaste. Xylamelts

[Navigator]

Hi again

Dry mouth
If the Salagan does not do enough for you over time there is an alternative Evoxac. It is similar and taken 3x a day.  I only take it twice and it is enough.  It can make some people sweat a lot.   Less is better if it works.
This will take time for you to find what works best.

Dry eyes
You don?t mention this but you might go to an ophthalmologist and have them checked out. There is a test they can do for dry eye which can contribute to the overall diagnosis (Schrimer test) and less intrusive than a lip biopsy...there is drug Restasis which is an eye drop taken twice a day which many find very helpful.  In the interim eye drops without preservatives may be enough. 

Aches and Pains.
Many of us are on Plaquenil which is a malaria drug that many find helpful for some of the bodily symptoms.  It is less harsh than other options but it does have a rare side effect of eye damage so you need to be followed by an ophthalmologist annually with retina scans.  I have been on it for over 12 years to no harm but you must be vigilant in getting eye exams and responding to changes in vision if that happens. Your rheumatologist would want to be sure of your diagnosis before moving forward with that.

Other
Many times those of us with autoimmune issues are very low on blood levels of Vitamin D.  I would suggest finding out what your Vit. D levels are and take steps to get it into the normal range if it is very low.  Some of us had to take prescription level Vit. D. for an extended time.  Fish Oil is another useful supplement if you are not a regular fish eater.  Basically live as healthily as you can and it can help.