Just Diagnosed

[Barb249]

I was just diagnosed with Sjogren's syndrome.  I did not ask many questions at the Doctors office and now I have so many.  He has me on prednasone and Plaquenil.  I understand that it will take 6-8 weeks before I see a differnece will this help with my energy level?  Can anyone tell me, will I continue to get worse with this problem or will the medication help me to go back to a normal life?  I'm very confused at this point.  I not only have dry eyes, nose, mouth but during an onset I also develope terrible Brain Fog, short term memory loss, terrible pain in the mid section, I have always had back problems.  At first I was just happy they knew what was wrong.  I was told that it could be treated with medication but now I'm starting to worry and find myself on the computer all the time trying to dig up information.  I get contridicting reports form severl articles that I have read so I was in hopes that someone that has this could help set me straight.  Thank you for your help.

[msjimenez]

I am 26 and was diagnosed about 6 months ago. They have put me on no medication, but didn't give me any information either. I don't necessarily want all the medical jargon, I would just like to know what more to expect. I already have the onset of dry eye, and dry mouth (not too bad yet) I have a severe and varying inflamation in the parotid gland, and also vaginal dryness (much to my husbands dismay). That is honestly about all I know. Please help! I want to know what is going to happen to me.

[Barb249]

I suffered weight loss; I went form 145 to 120 in about 4 months.  My clothes did not fit and I just felt embarrassed.  What other problems are you having and maybe I can help talk you through them.  One thing that I found out, Celica’s goes hand in hand with Sjogren’s.  Celiac’s is intolerance to glutton products and they will need to run a blood test to see if you have it.  Your body is not able to retain the vitamins and minerals that it should from your food.  I felt bad all the time and had no energy. They finally discovered this and now I’m so much better.  Please write and I will try and help or just be there to listen.

[lostgirl13]

hi, i just got diagnosed with sjogrens as a primary diagnoses. my main problem is weight loss due to me not being able to eat due to difficulty swallowing. my mouth is extremely dry that i can barely swallow anything. my rhumatologist just put me on EVOXAC, been on it for about 3 days and i still havent noticed a diffrence not sure why? i feel like i am going crazy and that nothing is going to help me at all. i hope that being on this website will help me remain saine and help me understand what is going on with me. trying to be strong, jessica

[Rite760]

Hi, I have just been diagnosed too! And feel exactly like you do. Relieved I know what it is because it's taken such a long time to find out what was going on, but also scared. I am just about to post a similiar question too. Just wanted you to know you're not alone.

[Want to feel well!!!]

Hi....I am currently taking Plaquenil and Prednisone with little side effects.  Everyone has different responses to medications and if you are having concerns you really should talk to your doctor.  

Plaquenil can take months to fully kick in, but in the meanwhile the Prednisone should be helping you.  If you are not feeling any better, please call your doctor.

Also, your doctor can give you an Rx to help relieve the dry mouth/eyes symptoms as well.

Hope you feel better soon,
Wanna :o)

[mamaberger]

My sister has Sjogrens and she was on Plaquenil but had to quit because it made her feel a lot worse. she literally said she felt like she was dying on the drug, no energy and when her friends saw her after she began this medication they were astounded at the downhill turn she took. That was her experience with it.

[Erin0313]

  I have had Sjogren's for almost 10 years. Do you have any other conditions like arthritis, m.s, lupus etc. or is yours Primary Sjogren Syndrome? Also what tests did they do do diagnose you? It can make a big difference in treatment. Plaquenil made me have terrible problems with gagging like I was going to throw up but didn't so I have been on a variety of meds. I also have m.s. and arthritis now though so my treatments have changed.
  Good luck to you and if I can answer any questions as a long time sufferer please let me know.
  Erin

[Barb249]

Yes, I'm interested can you please send me the links.  Thanks

[PlateletGal]

Hi ! My mother has Sjogren's Syndrome and she was on Plaquenil. She was told that it could take several months before she would feel better and she hasn't noticed any improvement. She decided to try a pathogen killing treatment that is successfully treating many chronically ill patients, including those with autoimmune diseases, and she thinks she's having success with that. I'm also on the same treatment for Chronic Fatigue Syndrome. You might want to discuss this with your physician. If you are interested, I can certainly post some links for you.

Best,

PlateletGal