Newbie from Florida

[Blue Kat]

Hello everyone.  I was diagnosed with Sjogren's on July 30 of this year and it was not a diagnosis I was expecting, so everything is new to me on this.  The reason I wasn't expecting it is because I don't have the dryness problems most people with this disease have.  My symptoms seem to be focused in the joint and muscle areas and it can be pretty bad when it flares up; the flare-ups usually last about three weeks before subsiding and they're happening with more frequency, which is what sent me to the doctor in the first place...I thought I just had every day some aches and pains until then.  My rheumatologist put me on Plaquenil and so far I'm tolerating it without problems aside from some easy bruising I've noticed. 

I'm wondering if there's anyone else out there who has Sjogren's but without the dryness problems like me?  I also have problems with peripheral neuropathy that seems to be slowly worsening.

[Chickpea]

Hi Blue Kat

Good to meet you!  I was very surprised by my SjS diagnosis because like you I only had mild dryness symptoms.

I was originally diagnosed with MS but further tests didn't confirm that, so I was in limbo for a couple of years waiting for a diagnosis and treatment.  I did drink a lot of water but never connected it with anything else, and although my eyes were very dry they didn't cause me too much trouble.  They were definitely low down on my list, well below the neuro symptoms, joint pain etc.

It's good to hear that you've been put on Plaquenil so soon after diagnosis.  Most of us here are on it and find it very helpful, although it does take a while to adjust to it.  Especially tummy symptoms.  Are you also on steroids?  They can help with the neuro symptoms.  What do you take to help with the pain?

I hope you enjoy SjS World.  There are lots of great people here you can get to know via the discussion boards and in the chat room.

Take care - Chickpea

[Blue Kat]

Thank you for your response, Chickpea.  I guess I should alter what I said and say that I do have some eye dryness in the evenings when I'm tired and I do tend to drink a lot of water, but otherwise I don't have the terrible problems a lot of people here have, for which I am thankful.  So far I'm only on the Plaquenil; I'm only on 100 mg right now at my request because I was leary of the possible side effects but since I don't have any (I have a cast iron stomach, so no problems there), I will probably OK it to be upped to 200 on my next appt. on the 30th of this month.  No steroids so far and I just take Ibuprofen for the pain, which really doesn't do much to help, I'm afraid. 

I might also add that I've had two colds in the two months since being on the Plaquenil.  My doctor said I might be at higher risk for infection while on it, but I didn't think that would include the common cold.     I'm definitely going to try to get a flu shot in light of this.

I look forward to getting to know the people here and sharing information.  I've been a reader here for a few weeks and the people here seem to be very nice.   

[Bernice]

Hey Blue Kat,

Welcome!

I was dxed about 25 years ago, but still have very little dryness of any kind, I like you mostly have pain, muscle weakness and fatigue along with brain fog which has been much better since starting B12 and Lexapro, and antidepressant. I am taking Lexapro for the brain fog, sometimes Kile Oil. I am not on any other meds. as I do not believe in taking meds. I do not need. I keep check on my organs and see no need for farther meds. I honestly believe this has helped me in the long run from developing so many of the problems of dryness and others associated with SJS.

You will have to learn what works best for you because we all are so very different.

I must also say, like you my eyes SOMETIMES gets dry later in the day if I am on my computer too long, but not enough for meds. of any kind. My mouth can get dry mostly over night or if I go too long without something to drink.

Take Care!
Bernice

[lynnmarie219]

Hi Blue Kat and welcome to Sjogrens World!

Wow you are brand new to this thing called sjogrens.....but I'm so glad to hear that you have a diagnosis and a good doctor that is treating you early on so maybe you can avoid some issues later on down the road.

Read all you can here and ask any questions that come to mind...this is a safe and good place to get information, support and friendship from people all over the world that really do understand and "Get it" !

Welcome to the family....

[Scottietottie]

Hi Blue Kat 

Welcome to Sjogren's world. I was interested in your comment about 'easy bruising'. This happened to me - but it wasn't the Plaquenil. It was Naproxen. I was told I'd have to stay off NSAIDs and that included Ibuprofen. I was advised to take codeine and paracetamol instead. Codiene didn't suit - so I now take Tramadol and paracetamol. If pain really flares up I do take Ibuprofen as well - but infrequently.

I'd definitely mention the bruising to your doc though.

I'm on 400mg Plaquenil daily and have never had a problem with it. Tapered onto it slowly though. Built up gradually.

Hope you find the site useful.

Take care - Scottie 

[Patze]

Hi Blue Kat,

Let me also welcome you to the SJS World!  Please do peruse the board as there are oodles of information among tons of topics that might be of interest to you.

I'm also glad to see that you've been diagnosed so fast, and I'm sure glad to see that you've got an on the ball doctor!  Keep him!

Take care -

Patze

[Pisces24]

Welcome to the group.  I am a fairly Newbie to SJS too as I was diagnosed in March 2009.
SJS is different with everyone. Short Snyopsis: My saga started in 2003 with odd bloodwork that my gp was determined to get the bottom of. So I had 2 years of emotional H with different so called specialists. Finally in 2005 I got sent to a teaching hospital and was diagnosed with indolent lymphoma by an internal med specialist. The IMS left and I got sent to an immunologist in in 2008 who thought to run the blood test for SJS this yr and BINGO - I hit high marks. SJS sounds a lot better than lymphoma!

My symptoms are in my bloodwork, lotsa teeth cavity problems, dry lower lip, easily gotten sinus infections w/ partroid gland swelling at times, at times "allergy eyes", some fatigue and I've found out recently I two spots in a lung that maybe scar tissue. (Another ct in 6mos scheduled.)  I know I have a weakened immune system. So though I feel pretty good, I see an immunologist, rheumotologist and pulmonologist now who all to a certain extent are puzzled w/me. Not sure if I am a tough little gal or just lucky.  :-\BUT SJS effects everyone differently.

BTW: Since us SJS folks don't know what the future will be, I consulted an attny so I know my work rights if the SJS I have gets really bad in the future.

[Blue Kat]

Sorry to hear about your problems, Pisces.  I've been concerned about my future with work myself.  I'm single and therefore am my only source of income and I do worry about the day when it my Sjogren's worse.  I'm 46 now and have a good 20 years of working ahead of me before retirement age.  I have a desk job and some days it's almost intolerable to just sit there while my joints feel like they're going to freeze into place.  Good idea about the attorney.  I'm not at that point yet, but I'll keep it in mind. 

I haven't been on this board since last weekend, partly because I've been busy and partly because my internet service has been spotty.  Grrr....

[mom2boys]

Welcome!
I started with mostly joint pain and neuropathy issues.  Just recently I've started with drier eyes and nose, but nothing like some folks have had to deal with.  I've been on Celebrex and it has helped tremendously; sometimes take it twice a day when flaring.  Take good care of your teeth!