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This patient support community is for discussions relating to lupus.
Thank you for sharing about your success with celebrex and wellbutrin! I've been struggling with SSRI's for several years and still haven't found on that works for me without lethargy, or incredible anxiety! Also, I've never been rx'd celebrex for my joints; just methocarbamol.
The sun allergy symptoms sounds like it could be discoid lupus, but rely on the immuno fluorescent stain to come back from the doctor! Blessings of Peace to You & Yours ~
First, I need to ask you about the dysphagia. I'm trying to figure out if this is what I'm experiencing. I have the extreme pain below the sternum, but I also have pain there when I swallow sometimes. Kind of like when you take a big gulp of something and it maybe has too much air in it and it hurts going down. I had my esophagus stretched too. So, I guess my question is what does it 'feel' like when you say difficulty in swallowing? I've tried all kinds of meds for the acid reflux with no success.
Anyway, my ANA was 1:640 and my first A-DNA was 1:40 and 8 mth later was 1:160. Here is my understanding about the A-DNA. A negative result would be a normal reading, so anything reported in a titer is positive and of course the higher the ratio, the more elevated it is. I could be wrong, but this is what I've gathered from my rheumy and internet reading, which is sparse.
Hope this helps.
Erin
My problems began with extreme fatigue, pain (joint and ligaments, muscles and tendons), mental confusion, unable to think of words and finish sentences and finally not being able to go any further than from my bed to my couch for about 6 months of last year. My ANA titer stays at 1:1280 which is very high but my DSDNA has always come back negative and so mas my anti-sm. I do have a positive chromatin neucleosomal antibodies but some doctor say they don't use that test so it can be very confusing. I have been on Cellebrex for many years because of a disc problem in my back and I didn't realize how much it was helping me now until I stopped taking it for two days about two weeks ago. I was starting steroids and thought I would lay off the Cellebrex a while for a break. I was in unbearable pain. I am right now on 10 mg. steroids and cellebrex and will go down to 5mg. steroids in one week and then start plaqunel. Rheumy's don't usually start you out on Plaqunel, they usually try steroids and see what pain stops and what doesn't. That shoudl tell them a lot. Steroids wil not help any pain of Fibromyalgia but cellebrex will. I am only telling you my experince and what I have been told and decifered (sp?) over the last year. I am also on Serzone which is an anti-depressant that has vertually no side effects, at least not for me and it helps with pain as well.
Here are a few things I can tell you from my own experience: Be your own advocate, don't assume doctors know everything and are also right because different doctors of the same speciality will diagnose and treat you differently, go with your gut feeling about a doctor when you pick someone (they work for you and you are hiring them to help you), and NEVER ACCEPT THAT YOU HAVE A DISEASE THAT WILL NOT GO AWAY. ADDITUDE IS EVERYTHING. KNOW YOU CAN BECOMING HEALTHIER AND STRONGER, AND IF YOUR FAMILY IS OUT OF TOWN LIKE MY DAUGHTER IS 2000 MILES AWAY FIND A GOOD GROUP OF FRIENDS OR SUPPORT GROUP LIKE WE HAVE HERE. Like I said, ADDITUDE IS EVERYTHING AND WHAT YOU TELL YOURSELF ON A DAILY BASIS CAN MAKE A WORLD OF DIFFERENCE IN YOUR LIFE. GOD BLESS!
Joni
Thanks for your very kind words. I'm sort of in a holding pattern right now. Still waiting for skin biopsy results and the CBC, CHEM Metabolic, and G6PD (what in the heck is that?) bloodtest result. I'm actually itching all over, but mainly on my face, arms, and scalp. No hair loss or sores. Again, don't feel great, but certainly don't feel poorly enough to not work. Can you tell me the major differences in SLE and Discoid Lupus in terms of blood test results, symptoms, prognosis, etc? That is, if the results of the skin biopsy come back positive for Discoid, does that mean I would be out of danger for damage to internal organs and should just avoid the sun to prevent rashes? Somehow, I just know it's not as simple as all that, but any light you may be able to shed on it will be much appreciated. And, because the Celebrex seems to have been working so well for joint pains over the years, couldn't I just continue with that? Or, will they tell me to take Plaquenil (spelling?) instead? Or perhaps in addition to?