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Life With Lupus

This is really difficult


#1

I was diagnosed in late January. Getting to that point was not easy. I was in and out of hospitals for about a year with extremely high blood pressure and shortness of breath. I had severe gastro problems and ended up having a Colonoscopy followed by an Upper Endoscopy a couple months later. I was sent from doctor to doctor until finally a doctor finally decided to take me seriously. He tested me for autoimmune diseases and my ANA was positive. Basically, I was diagnosed with SLE, Sjogren’s Syndrome, Scleroderma Crest, Polymyositis, Neonatal lupus, and first degree heart block. Needless to say, my life is interesting now. I am only on Amlodipine for the pulmonary hypertension caused by all of this, Meloxicam for my joints, and Pilocarpine for the Sjogren’s. I am having another flare now and my insurance was recently cut. Does anyone have ideas to handle this? I am in extreme pain and fatigued all day. :confounded:


#2

I wish there was something I could tell you about the insurance aspect, but I’m still researching that. I can tell you that you are not alone. I go to my share of appointments and it has taken a toll on my pockets and everyone else that has been being supportive of me. I just had a monitor placed in my chest, found out I have Chiari 1 malformation and my heart stopped. I thought I’d got all the bad news when I found out I had lupus, but I didn’t know we were just getting started. It’s wonderful that you found this group early because I had to face the storm alone. I will keep you in my prayers and will continue to research the insurance.


#3

Wecome to the group.
Rest is very important. Is their a teaching hospital close to you? They are good about working with insurance and with people who don’t have any. Also if you see different Dr their all connected and no what’s going on with all your diagnosis.


#4

Hello. I’ve been diagnosed for a year or so now. I’m not an expert in lupus and I am far from being one, but I’m wondering why the doctor didn’t prescribe Plaquenil which is the medicine used to keep the lupus dormant (as much as possible). In most conversations I’ve had with other lupus patients, this medication is as close to a panacea as we can get.
I hope you square away your insurance problems and have learned more how to manage around this disease.
Greetings!
BB