New to Sjorgren's and feeling a little lost.....

[momof2]

Thank you, Thank you everyone. I already feel better knowing I am not out there all alone. I will look into the Plaquenil some more. I trust my primary Dr very much. She will tell me just what she thinks about it.

I look farward to getting to know everyone. Thanks again. I'm going to bed tonight with a little lighter heart. :-)

[cremer]

Just like to welcome you as well. I'm new here and found them a great bunch, so friendly and helpful.

I also take 400mg of Plaquenil and it has helped me loads with Sjogrens symptoms. But regarding the eyes, I do suffer from flashing lights like someone taking photo's behind you.
I think this is more a symptom of Sjogrens then the medication, but I could be wrong.

[momof2]

I have decided to wait on taking the placquenil. WE have crappy insurance. And I'm concerned it could be affected now or in the future if we try to find different insurance. In the mean time my Dr is checking me for food allergies. Not really sure if that could help but it sure cant hurt.

[irish]

Mom, I want to tell you that my hubby didn't understand much at all and I know that he had his "druthers' when it came to all my symptoms. He was always nice, but not quite knowing what to believe. UNTIL---

Until he had back surgery and got 4 different kinds of serious infections and almost died plus had to be in hospital for 75 days receiving IV antibiotics and another back surgery. After that he seemed to change his tune. He still didn't understand all I was going through, but he did understand that being really sick wasn't fun. He had never been very sick before that episode. He has since been sick alot as have I. We take turns taking care of each other.

If you hubby or anyone elses hubby get a little "bucky" about your disease issues just remind them that they may not understand right now, but as soon as they get really sick they will be on the bandwagon. Might just give them something to think about. We always think "won't ever happen to me"---but it does and it will. Irish

[Sha]

momof2~

Your symptoms sound a lot like mine, didn't even know I had dry eyes or mouth, but always had my eye drops, water and candy...just didn't know I was self treating it!! The other issues like pain and fatigue are always more bothersome, especially when ya have lil ones!!

Hope ya can make your family understand this is for real!! If not, ya always have us!!
Sha

[mink]

Welcome Momof2,
   My hubby tries to understand but sometimes just cause i  don't look sick he thinks i'm not and he'll say something like "you're looking better today ! where do you wanna go ?" and it kills me to have to burst his bubble and say "Honey i can barely move , not today" ....but he gets over it and we go on.
   About the plaquenil...Since i have scleritis, My eye doctor didn't want me on it and put me on cellcept instead....but the cellcept didn't do much. i have a friend who also has sjogrens and thats what she's been on and it helps her enough that she's able to care for her little ones and work.  So I guess it all depends .

Once again , welcome and good luck in finding what's right for ya 

[Bucky]

Just to clarify . . .  when Irish said, " a little "bucky"" . . . . she's NOT referring to this Bucky.   

[quietdynamics]

Hello Momof2....I have 2..2
The fatigue really is amazing. If I heard what I am feeling from someone else...I would find it hard to believe.
Gosh I was so active all of my life, work, raising two children on my own, masters courses at night, and equestrian programs in the summer....where did it go?
I would get up for work and literally fall (after 10 hours of sleep). I could barely comb my hair out after a shower (forget about shaving legs.) without resting.

Summer heat or any heat is intolerable for me. That plus the utter exhaustion makes me too nauseous to eat...but as sole support of myself and the kids ..I pushed.

Currently, I take plaquinel (sp?) it's purpose is to slow the progression (suppress our misguided system) , and help with inflammation. The risk to your eyes should be weighted against the benefits. Even Aspirin has a risk. And ALL Pharma state risks in an effort to avoid liability, no matter how small the % who are adversely affected or how inhumanely high the dose would need to be to incur the risk.

Since this is a "you don't look sick" disease. When I go to the doctor I go as is...my face actually turns a greenish gray color, I wear no make-up (even though when I go out I put blush on so I don't look so pale). I am not pretending to look unwell, it just does an injustice to not let the Dr. see reality. I would advise you not to take anything, however benign and/or natural it may appear until you see your doctor. This will ensure that your blood results are accurate. In the meantime do try to rest and pace yourself, eat healthy and drink fluids.

Your husband doesn't understand? Or is he not ready to understand?  I think that when someone is sick, they do not see that their partner, spouse, children, etc, are at the beginning stages of their own sense of loss, helplessness...and then grief.

Whenever I google for information I add .org to the search so that I get credible sites. You can find studies on Plaquinel, you might find encouraging.

My sincere best to you, Barbara