... Thank you, Heidi!
It amazes me that there are many people like us that have fibro and this "ambiguious" disease. UCTD is just so vague but makes sense at the same time.
I hope you can get off the prednisone soon. I never thought I would get off it because I had to keep postponing the end time and had to taper so slowly. Since you are starting the Methotrexate... (2 replies)
... I have a question. What if I started Plaquenil, BUT what if I don't really have Lupus (if my face rash is rosacea and my joint pain is something else)...it just concerns me...since there is no definate test for Lupus...so, what if I were to start taking it...would it harm me? (17 replies)
... Reader, I wrote back on your other post but wonder about your mention of rosacea in this one. Are you SURE it was rosacea? ... (13 replies)
... I've read varying reports whether rosacea can be distinguised from malar rash solely on appearance. The more "medical" articles tend to say NOT, that skin biopsy is the surefire way. ... (6 replies)
... ist who insisted after just one visit that I did not have Lupus and had primary Sjogrens. This is why my current doctor held off on a diagnosis. Eventually the Plaquenil did not work anymore, so I switched to Methotrexate. Ater two years on Methotrexate I am having a real hard summer. ... (9 replies)
... Uhm I was being treated with Plaquenil but I stopped that a few weeks ago. I feel that I want my symptoms to fully come around so that I know what it is exactly that I am dealing with. ... (2 replies)
... erienced or are experiencing very similar issues. I too went to 4 Rheumies before I finally found one that is on the same level as myself. Even my PCP said I had Rosacea and that it was a fluke that my ANA was positive but because I wanted to make I insisted to go to a Rheumie, and I am so glad I did. ... (7 replies)
... This is my third rheumatologist and I really like and trust her. The first two were quick to determine what I had. The first took my rosacea to be a malar rash. With that I would have met 4 criteria. The second thought I had primary Sjogrens and not Lupus. ... (4 replies)
... the Plaquenil make it better, worse or the same? ... (10 replies)
... Hi There,
I have an apppointment to see a Rheumatologist this week. I have been trying to figure out what's wrong with me for about 8 years.
Question: I have a severe, burning face that has been diagnosed as rosacea.
Did the Plaquenil help your rosacea (you said that you definately have rosacea and
not the lupus rash).
Thanks so much, (10 replies)
... and rash on face that is rosacea and not malar rash. I had a brief period of anemia when I was trying to stay on a vegetarian diet, so I don't count that. ... (10 replies)
... current Rheumie for almost a year now. Due to a previous dx of Lupus and then of Sjorgrens, she would not give me a dx. Instead, she kept me on the name brand Plaquenil that I have been on for over a year. She also placed me on a NSAID last winter when I had excruciating joint pain in my hands and wrist. ... (2 replies)
... I've been on Plaquenil for a year and have really benefitted from it. ... (1 replies)
... Those are great questions, Vee. Unfortunately, when my doc said, "lifelong treatment" and "Prednisone" in the next sentence, I assumed she would mean I'd be on Prednisone forever. She didn't say how high a dose I'd start on. Guess I was in a bit of shock at the time. While I wait for the latest bloodwork, I am trying to get a second opinion from a local University Teaching... (11 replies)
... upus patient who feels great and has never had joint pain or other lupus symptoms like lack of energy. I do have potential malar rash, but it may also be due to rosacea because it is brought out by thermal heat more than the sun. ... (11 replies)
... Hi all,
Just need to vent a little. I was diagnosed last May with Lupus. I was a mess. My hair was thinning, had severe joint pain, major fatigue, benign cold sores in my mouth, I was running low grade fevers, rosacea rash in a butterfly form, high ANA, positvie Anti-La and Anti-RO, positive Rheumatoid, high sed rate. I was placed on Plaquenil by my PCP/Rheumatologist.... (6 replies)
... Hi Marykay,
I just recently posted with a similar issue. I was diagnosed with fibromyalgia over three years ago. When going for routine exams my bloodwork came back normal except I always had a high sed. rate. About six months ago my health started to go down the tubes. I quit a horrible job and then a couple of months later had to get my gallbladder removed.
I had... (10 replies)
... mal bloodwork again. My sister was diagnosed with lupus even though her tests were never positive. Because she had so many symptoms of lupus her Dr. put her on plaquenil and her symptoms went away within a few weeks. Her Dx went from possible lupus to confirmed lupus. She has been on the med for a few years and is doing well. ... (4 replies)
... y symptoms at bay and spends alot of time with me so I trust whichever direction he is taking this.. I still get blood work done regularly as I have to ensure my Plaquenil is at an adequate level and my thyroid level is ok.. ... (2 replies)
... Hi Jennifer -
I hope by now you have tried to schedule an appointment with your MD. This is not something you want to allow to go too far without being treated. Unfortunately yes the disease can be hereditary however, my aunt is the only other family member that has what I have. SLE Lupus, Fibromyalgia, Raynauds and many other. It's important though that you get on the... (6 replies)