I was recently diagnosed with secondary Sjogren's, but I'm not a newcomer to the autoimmune club. About 20 years ago I was diagnosed with Relapsing Polychondritis. It came on like a bolt out of the blue ( just like my Sjogren's), and I was on methotrexate for more than two years. During that time I mourned my loss of good health, and sought alternative treatments in the form of all sorts of faddish supplements. Remember shark cartilage, algae, amino acids, cider vinegar, etc.? None of these worked. Then, out of desperation, because MTX was not really doing much for my inflammation, I resorted to going to a clinic run by a quack ( I didn't realize it at the time), whose main mode of treatment was to detox everyone by administering hydrogen peroxide intravenously. Everyone suffering from any kind of ailment was placed on the same liquid diet, and forced to down dozens of supplements every day. I left after one week, returning to my husband and young son almost 10 pounds lighter. My rheumatologist told me I was lucky to be alive. I embraced MTX, accepted it as my fate ( for awhile), but continued to do research. I knew that my RP was related to my stomach issues, and to make a long story short, got tested for Intestinal Permeability. I tested so high, but my gastroenterologist only recommend "eat more fiber." I experimented with different kinds of probiotics, and finally found one that made my symptoms subside. Then they literally disappeared. I threw out the MTX, and continued with the probiotic for about a year and a half. Then I got a bit cocky, and decided I could stop taking it, but always kept a bottle of the stuff in the fridge.
That was a long time ago. This year I started to experience severe heartburn every afternoon, no matter what I ate for lunch. It would come on suddenly, around 4 pm, and it was so bad that I felt bile coming up. I had a colonoscopy and an endoscopy. The only thing that showed up was a tiny ulcer ( which I had always suspected), but my gastro simply said, "watch the wine. Don't drink so much." That made sense to me. He also prescribed Nexium which I took intermittently. Except for the occasional heartburn, my health was great. At 68 I could walk 5 miles a day, and enjoy many activities in my retirement.
You won't believe this, but I pushed myself over the edge by having cosmetic surgery in January. I succumbed to vanity, and the encouragement of friends who had some "light work" done on their faces. That was the nail in my coffin.
I developed Sjogren's almost overnight after my neck lift. At first I thought my dry eyes( stinging and burning) were the result of the surgery, as well as my neck discomfort. When my ears started hurting again, I knew it was the RP. Sjogren's was something I had heard of, but didn't even think it was possible.
My rheumatologist said I had all the symptoms, including extreme fatigue.The good news is that my ANA was negative, which means I don't have lupus. I tried taking the probiotic, but it had no effect whatsoever.
Does anyone else here feel like going to sleep at 4 pm? I'm about to start Plaquenil tomorrow, and get off the Prednisone which didn't do a blessed thing for me. When the brain fog sets in, I feel as if I'm underwater. In two weeks I'll be getting punctual plugs for my eyes which are not responding to Restasis after two months.
I'm in agony, and it is ALL my fault. Let this be a lesson to you. Don't mess with Mother Nature. My husband tells me "you looked just fine with your jowls and turkey neck." I would give the world to get them back if I could reverse this horrible curse.
I never was so eager to get a medicine as I am to get on Plaquenil. I know it doesn't work for everyone, but I hope it helps me.
I'm very grateful for this forum. I know it's going to be very helpful for me.
Welcome to the forum. There are many alternatives that can help. You can find what some of us do in our sinatures.
water: sip, swish then swallow. Wearing a mumps scarf to bed each night helps me.
Welcome LindaBridge.
Don't beat yourself up...there is still so much that is not known about SS and how it is activated within the system. I will always swear that when I took Boniva...I launched mine. Of course I will never know for sure.
I hope the Plaquenil works for you also. It helped me within 2 weeks. I don't know about the plugs. I turned them down. I did end up having cataract surgery for both eyes however.
You have come to a great group. People are very knowledgeable & supportive here. And to answer your question about feeling like sleep at 4? No not 4...way before that. How bout right after I have arrived at work.
I wish you luck in getting answers & relief soon.
Take Care.
SjoDry
Welcome to the forum, Lindabridge.
I agree with SjoDry. Don't beat yourself up about the cosmetic surgery and thinking it triggered Sjogren's. Once you have one autoimmune disorder, you are likely to have more and you never know when it or they will appear. The timing of the Sjogren's and surgery could very well be coincidental, or Sjogren's could have presented later anyway.
I hope Plaquenil works well for you. it can take up to 6 months for the full effect to kick in so if you don't feel better as soon as you would like, try to be patient. It worked within weeks for me and I hope you have a similar experience. Before I started taking it, I was going to sleep earlier than usual, sleeping later than usual and a mid-day nap would be welcome.
Thank you for your kind words and support, fellow Sjogies. I just took my first dose of Plaquenil with dinner, and will not expect an overnight miracle.
I think the reason my fatigue doesn't surface until 4 is because I'm sill on Prednisone, which has hyped me up and made me a bit manic. So far no one has said, "you sound as if you have steroid motor mouth," but I feel very self-conscious about talking rapidly, and not being able to sit still. Now that I'm starting to wean off the stuff, I expect to feel just as tired as you do earlier in the day.
Does anyone else have swollen sublingual glands? it's a toss up as to whether the dry, stinging and burning eyes are worse or the feeling that someone has tied a noose around my neck.
I will keep you updated about my progress. Thank goodness for this forum.
hello Lindabridge.
I also take methotrexate.......don't want to....don't like too
but I made friends with it and we get along. I also take Plaquenil.
The Plaquenil was a life saver....I was put on that and prednisone
in the beginning of my diagnosis in 2010. I have sjogrens and RA
Remember...it takes awhile (months !) to notice any improvement so
be patient...took me 4 months to notice and my rheumy tapered me off
prednisone.
I think you may be on to something about the cosmetic procedure
and the sjogrens appearing. Stress I have heard could bring it out if
you have it in you.(autoimmune dz)
When I was working in family practice we had a lady who was in her 40's
who finally was able to get her a second degree she wanted...she wanted to be
a social worker......long hard road esp. as a single mom...etc....
When she got her degree, she wanted to treat herself to liposuction to
her abdomen, hips, etc..... and a great island vacation.
Long story short.....almost immediately she went down hill fast...won't bore
you with all her health failures but she developed multiple sclerosis.......a
terrible unrelenting progression with no remissions. She never got to use her degree.
When I got waylaid hard with sjogrens/RA in 2010....I had stress in my life at that
time......mother and sister moved 1000 miles away.....our youngest married and left home,
we moved to a new home also....
Just like if we have stress now.....it will cause a "flare".
It's not your fault you have it........please take care of yourself.
shelly
Now that I think about it, I wonder if my Sjogren's was starting to rear its ugly head this summer, or even earlier. My husband wanted both of us to do the DNA testing that gives you information about your ancestry, etc. We had to submit samples of our saliva, and I found it difficult to get enough of it to fill the test tube to the line. Since I'm not accustomed to spitting ( except after using mouthwash), I remember how hard it was to get enough saliva. I didn't connect it to any disease. I just thought it was amusing.
A few months later, I started to be plagues by horrific heartburn in the late afternoon, no matter what I ate for lunch. Despite eating bland food, or light salads, I would have burning in my chest. I hadn't had heartburn in over 30 years, since I was pregnant. I thought it was because I was eating lunch, then playing bridge for three hours, which meant sitting for three hours after eating. I tried taking the usual heartburn OTC meds, Nexium, etc., but they didn't do much. I have read references by other Stogies on this forum to GERD, and I wonder if this is the cause of SJogren's, or a symptom. In other words, which came first, the chicken or the egg?
So, maybe my surgery just sped up what was coming around the corner. I'll never know.