Hi everyone! I have been undergoing testing to confirm my sjogren’s diagnosis for the past 9 months. I’m finding this all very overwhelming and I’m desperately trying to navigate all the information. I have dry eye, dry mouth, parotid swelling, fatigue and have started developing pains in my hands and feet. I have some medical knowledge so I’ve been reading my test results and I’m concerned with what I’m seeing. Decreased gfr, high IgA, high beta 2, monoclonal chains, etc. Any input from those that have been there would be great!
Hello & welcome!! These boards can get a bit slow sometimes. So sorry that we meet under these circumstances tho. I wish I could be of more help to you but I, myself and still learning SJS. I have just been Dx a bit over a year(I am sero-negative…had to go the lip bx route).
The fatigue is the worst for me. I take plaquenil 200 mgs twice a day & evoxac 30 mgs 3 x daily. It took about 4.5 months before I could tell the plaquenil even started helping. But there are still some days where I have to take 2 naps BEFORE noon. I hate those days…but what can I do???
Everyone here is AWESOME and I am sure more people will be along shortly to welcome you.
Looking forward to getting to know you better…
Welcome momma2go! It can be quite overwhelming when first learning about this. A lot of the symptoms are manageable, but it can take some time to find the right meds to help out. Please keep coming back and let us know what questions you might have.
Thanks everyone. I’m what I’m assuming is still early in my diagnosis so right now I’m not on anything except some prescription strength naproxen for the pain. I’ve been taking a multivitamin, iron pill, glucosamine and melatonin on a daily basis to help me out but I’m so use to be being busy it’s been hard to slow down.
I was diagnosed right after I had my son. I knew something wasn’t right when I was much more than newborn tired. He’s now 11 months old and I’m barely the mom he deserves to have. I have a 7 year old daughter as well and I know my pains and my fatigue have taken a toll on her too.
How do you all manage your fatigue? I’m up at 5am most days just to get out the door and I’m ready to fall asleep around 8:30am (which is unfortunately right in the middle of my commute to work). I don’t get home until 5:30/6pm and with the housework and kids I’m lucky to get to bed by 10. My husband is trying to be supportive but with neither of us really understanding how this works just yet it’s hard for him too.
Looking forward to talking to people who get it. It’s so hard for me to explain to my co-workers, family and friends what I’m going through when physically I look just fine.
One of the reasons to go on a disease modifying med is because of fatigue. If you haven’t already been clear with your doctor about how it’s affecting you and your family please communicate this clearly. Plaquenil is a med that is often prescribed as the first disease modifying med, and it can make a huge difference for fatigue. Also make sure to get your thyroid levels checked.
No one has ever mentioned Plaquenil to me. I’ve explained to my dr how bad the fatigue is and she sent me for a sleep study to rule out apnea which lead to a study to rule out narcolepsy, which I’m currently waiting on results from. I have had my thyroid checked and it was fine. I’ll be sure to ask about Plaquenil though. Thank you!
Welcome aboard!!! We understand how overwhelming the diagnostic process is. I suggest you check the sjogren’s syndrome foundation website. Also the same foundation publishes a book which is just so comprehensive: The Sjogren’s Book.
I do not have enough medical knowledge to comment on your lab test results. I normally google about them and it usually helps.
Just remember you are not alone, we are all here for you. This group is amazing, it feels like family, so feel free to look around and ask as many questions as you need.
Hang in there!!!