Hello I am brand new

[missy1306]

Welcome Dawn!! I am fairly new two, just diagnosed 6 months ago, but this site will bring you comfort and encouragement.

[Lesleybird]

Thanks so much for such a warm welcome!! I feel so...understood!! I am having a bad morning (thank goodness cause I see the rheumy today) yesterday was an ok day, no red face (as I call it) I am asking her to put me back on the Plaquenil. I/she thought I had an eye reaction to it but that would have been impossible because I was only taking it for a week or two. I think it was the Sjogrens that was causing my eyes to hurt and we just didn't know it yet. I can't wait to go to the store and get some tears drops and some nasal spray!!!   I'm almost giddy about it! When you suffer so long, it's overjoy when you can find relief! You guys are great and so welcoming!! I can't thank you all enough!!! I will let you all know what happens today! I know I'm getting an ANA test for sure but that's all I know right now. When I see her she will more than likely (SHE'D BETTER) run the appropriate tests for Sjogrens. LOL!   Thanks again everyone for all the love!!  
Dawn

Don't get too excited as the plaquenil helps but you will still be sick. There is no cure for this disease.   Good luck, Lesley

[dbab]

Welcome Dawn... you have received some good advice.  Good luck with your next appt

[TerriJ]

I'm new to this disease too Dawn.  Can't add much, but wanted to say welcome to you!!

Terri

[lesmom]

HI , Dawn and welcome aboard
I'm fairly new too. I was dx by my opthmologist for the Sjogrens and the neurologist dx my Raynauds. I have my 1st appointment July 29th with the rheumy (I've had my appointment for 4 months ). So fair all of my blood work has been neg, but you will find a lot of people that have the disease and the blood work won't show it. I'm lucky to have an internal med dr. for my PCP that really listens and is helping put things together for me. He dx me with Fibromyaglia before the other doctors made theirs.  Right now I'm on a lot medications and have been having a lot of flare ups- especially if I over do it and I don't get enough sleep. I am hoping that I'll be able to reduce the # of pills I take and feel a lot better.
Good luck today at the rheumy. Please let us know what they say.
Hugs,
Leslie

[lovies10323]

  Hello everyone! I saw the rheumy and she gave me a definite diagnosis of Sjogrens...FINALLY, an answer!!! She put me on Plaquenil 200mg twice daily. I know it takes time for that to work, but its worth the wait! She also prescribed Evoxac 30 mg twice daily for 3-4 days then go to 3 x's a day. I haven't filled that script yet cause I just don't have the money for it right now. Has anyone else ever taken that? How did it work for you? I'm currently using "blink" eye drops and saline spray for my nose. I just got over a sinus infection and ear infection that has returned now, a week or so later! I am asking my Dr for a stronger antibiotic. 

[Liz D.]

Hi lovies,

Evoxac is a great drug, but be prepared that with 3 to 4 doses a day, you may sweat very heavily.  I am on 2 a day for that reason.  But it will help with your dryness.  The Plaquenil is the best drug, too.  Glad the rheumy put you on it.  Be patient, though.  It takes a while.

I used to get sinus infections all the time!!  Especially before my diagnosis.  Now I use saline nasal rinse every day - in morning and at night, whether sick or not.  I also use Flonase once a day.  I am glad to say I have not had a sinus infection since.

Liz D.

[Katybarstool]

Hi Liz

I'm seeing an oral consultant at the end of July, due to problems with my severly drive mouth. When it gets really bad, I can hardly talk, and my dentures hurt and cause sores as there's nothing to hold them in. My dentist has referred me and I'm hoping I get some Salagen or similar. The dentist has some knowledge of SJS, but by his own admitssion, he hasn't any experience of using the meds, and would prefer a consultant to oversee this.

The end of July seems a long way off, particularly as the referral was meant to be made in March but, due to an admit error, didn't go through until the end of May. I'm interested in what the consultant will make of my facial/gland pain, and whether he is as knowledgeable as the dentist suggests. Fingers crossed!

Kathyx

[Chickpea]

Hi lovies

I'm so glad you've got a definite diagnosis and a doctor who's prepared to start treatment right away.  Glad you've joined the Sjoggie 'family' but also sad you've had to find us.

Pooh has great ideas about starting Plaquenil gradually.  I followed her advice about starting with a low dose and building it up over a few weeks, as well as taking the tablets with food especially yogurt.  I'm sure she'd be happy to give you details if you PMd her.  It can take 3-6 months to feel much effect but it's worth the wait.

Do you have to pay for your medications?  Are you in the USA or UK, or somewhere else?  If you're in the UK you can get a pre-paid card so you only pay ?10 per month for unlimited prescriptions rather than pay ?7.20 each time. 

I hope the sinus infection clears up soon.  Post lots and let us know how you are doing.

Take care - Chickpea