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Update: Got diagnosis finally

Apr 13, 2016 1:39 PM

I was diagnosed with lupus yesterday. I hate that I have it, but I'm glad to finally have answers after a 2.5 year battle. I'm on methotrexate now along with some other meds. Doc wanted me on Prednisone but I turned it down with the agreement that if I'm still in a lot of pain next time I see him I'll have to go on it. I'm on a heavy duty antiinflammatorie for a very short time instead. Prednisone scares the begeebies out of me. Both upfront side effects and long term damage it causes.

Apr 13, 2016 1:50 PM

Um happy you gave an answer and I understand the fesr a d saddness of knowing what u have ahead of you. Thank k you for keeping us informed on what's been happening. Im in the same cycle u were in. Drs going back and forth with Lupus or not. So I understand. I dont want to have it but I do want to know exactly what I'm fighting. So again congratulations on your answers and as u know we are here for you.

Apr 13, 2016 2:15 PM

Well in the same boat except they are not so much worried about the LUPUS numbers yet as they the number's that came back for Sjogren's as those were the 2 DX's I was given today. Not happy about either one and I have to do alot of research on the second as I'm not all that familiar and I'm very concerned.

Apr 13, 2016 4:14 PM

Gibber, I'm sorry it's Lupus, but like you said, you at least know what it is you are fighting. My hubby's cousin has had it for 30+ years and lived among the "healthy normals" the first twenty years. This last decade has been harder on her body, but she's older (60s) and still a fighter. You'll be in my prayers! Hugs!! 🙂💕🙏🌼

Apr 13, 2016 4:45 PM

New Fibro, mopar and flappy thank you all. Sorry you're in the same boat. I hope you get answers soon. It sucks to be in limbo. Don't give up until you get them. I'm finding my internist to be much better than any Rheumies I've seen. I've also discovered that they can diagnose and treat this stuff. For that I'm grateful. I have specialist in town who has my back.

Apr 13, 2016 7:26 PM

Gibber hat good to know about Internists. Mine is old & retiring, so I need a new one, younger than me. Lol And after yesterday's rheumy appt I am likely leaving her. I hope you'll soon start getting a treatment plan that helps you feel better. Hugs & prayers! 🙂💕🙏🌼

Apr 13, 2016 8:07 PM

Thank you Flappy. I'm sorry your appointment didn't go well. What happened? One of the two docs I see is much younger. I call him " Doogie" He let's me. I think he actually likes it. It's a very casual office I can call the doc by his first name too which is Hugo. Makes me giggle. I hope you find a good doc who listens to you.

Apr 13, 2016 9:08 PM

She was rude & Condescending, as well as insulting to first my hubby's question and then later about my weight. I posted it on one of my links, but my brain fog isn't letting me recall which one. Lol

Apr 13, 2016 9:11 PM

Oh, it's the one about BMI > 29...

Apr 13, 2016 10:07 PM

I hope you find an understanding, compassionate doc who's top notch in every way.

Apr 13, 2016 11:04 PM

Oh my goodness that's awful. Too bad there wasn't more accountability for docs. Sorry you went through that when you're already going through enough.

Apr 13, 2016 11:46 PM

Sorry to hear of your diagnosis but happy treatment has started already. I'm STILL waiting on my results. 3 weeks later! Did they say you do anything else to help flares (like diet or anything)?

Apr 14, 2016 6:29 AM

cdngirl, are your joints in your hands swollen and hurting? My doctor suggested that I use a paraphine wax and stick your hands in there quickly and pull them out and let the warm wax cool then pull it off. Do that at least 2 times a day. He said it works great for arthritic joints. He has his mom do it and she swears by it. Lol funny thing is my doctor has to be in his 50's.

Apr 14, 2016 9:30 AM

CDN girl thank you. No they just wanted to get me on meds ASAP to slow the damage. I have arthritis in all my joints from lupus and a lot of pain. Wow you've waited 3 weeks? Is that for a follow up with test results or apt.? Too bad you couldn't come up here and see Dr. Bertozzi. He's awesome as is his physicians assistant that I call "Doogie" His secretaries are great too. They even took the time to fill out the form for a handicapped parking pass free of charge. Something I couldn't even get my GP to get back to me on and he'd want $50 if he were to do it.

Apr 15, 2016 12:24 AM

My hands are hurting but not inflamed. They burn in my wrists, thumbs and fingers.

At least they are being immediate with your treatment now, Gibber.

My PCP asks her assistant to either call me with results or to have me book an appointment with her. I think because some of the tests were specialized that is why I haven't heard anything yet. The last time they tested me for lupus, it took almost six weeks.

Apr 15, 2016 6:27 AM

Cdngirl, I was tested for LUPUS and aray of other autoimmune diseases and it only took a couple days to come back because of the heavy metal posing panal pulled. If I were you I would call the office again because when I had blood work done with quest My Dr's office had forgotten about it and I called a month later and my Dr's office had to call quest to get the results and one of them they had messed up on again so that's when I decide to pay out of my pocket for the Dr's office in house lab to draw mine.

Apr 15, 2016 6:32 AM

Oh! Also, the wax treatment I told you about will help your joints. My Joints are always swelling and painful in my fingers and such, My Doctor is the one who recommended it. He has his mom do it and she swears by it and he says it can help with the pain.

Apr 15, 2016 9:16 AM

CDN girl what you described is exactly how my joints feel. And no visible swelling except on the finger most affected by Raynaud's. That's why the doc says lupus and not RA. He said there'd be more visible swelling if it were RA. He said needed to be on treatment ASAP to slow the damage. Keep bugging the docs office if they haven't given you a follow up.

Apr 16, 2016 1:33 AM

Thanks :) I think I will call them Monday.

Apr 16, 2016 7:53 AM

All the best. I hope you get in and get answers.

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