Long time listener, SECOND time caller
I made my first post the other day about starting IVIG, and it got a LOT of questions, but I was pretty wore out from three days of infusions and living in a hotel during it all that I didn’t get around to answering them. So for everyone that was wondering, here’s my Sjögren’s Story. Hope it helps someone. NSFW tag because I’ll probably use some naughty words. Sorry.
Got very sick in summer 2023. Wife found me with a 105 fever and a rash all over my body, and I was super delirious. She called an ambulance, went to ER, got admitted and spent a few days in the hospital. They told me I had Lyme Disease and to follow up with primary care.
I go see primary care and at this point my arms and legs feel like someone beat the hell out of them with a baseball bat. She says “your bloodwork came back. It’s not Lyme. Have you ever been told you have an autoimmune disease? Your bloodwork shows you might have one. I’ll put in a consult for rheumatology.” Unfortunately, I live in rural MO, so there’s not many rheums around, and the wait to see one was like 4-6 months.
Within a few days my hands and feet and arms and legs start feeling like they’re on fire. 10/10, worst pain I’ve ever felt (and I’ve been through some gnarly injuries). The pain wouldn’t go away. I stopped sleeping because the pain was so bad. I was in and out of the hospital for a few months, just getting shot up with dope to stop the pain for a few hours. Hydromorphone was the one that really worked. 2mgs IV. Repeat 2 more times over an hour. At this point I had been in so much pain for so long I wanted to blow my brains out, but my hands were so jacked up from the nerve pain I couldn’t actually pick up a gun and pull a trigger. You ever been awake for like 6 weeks? You start seeing and doing some CRAZY stuff. I beat up my shower at like 3am one morning. That was awesome.
Get up to STL and see a neurologist who diagnoses me with SFN and puts me on Pregabalin. Had been on gabapentin for a back injury years prior and it had no effect, so we went with the pregabby. She’s the one who first mentioned something called Sjogren’s, and I had never heard of it before.
Got sent to a liver doc because my liver enzymes were crazy high. Liver doc thought I might have “autoimmune hepatitis.” He says he has to do a liver biopsy. We go to do the procedure and he gave me a dose of fentanyl. I didn’t feel a thing. That was the first time I really got worried. I had been on so many drugs that now fent didn’t even have an effect on me.
Finally found a rheum in Kansas City who could see me quickly, so wife and I drove 4 hours to see the doc. He did his own bloodwork and said “yea bro, you’ve got Sjogren’s.” Of course I said “dafuq is that?” And he was like “rare autoimmune disease, typically effects women, in the rare cases men get it they usually get rocked really hard and their number one symptom is SFN.” He started me on hydroxychloroquine.
Between the rheum and the neuro, they both wanted to start me on IVIG, but the problem was I was still in the military on active duty. I was going through the process of a medical retirement for my back (4 spine surgeries, like I said, I know pain) and had basically been granted a leave of absence to deal with all this stuff. Good thing about the military? Free health care. Bad thing about the military? Free healthcare is ran by the Dept of Defense and the Defense Health Agency. DHA and Tricare said “IVIG is not FDA approved for Sjogrens, so there’s no way we’re paying for it.”
Between all the meds, my conditioned stabilized enough for the Army to re-start my medical retirement, and once I was out, I started getting care from the VA. It took a long time and a lot of doctors, but the VA gave the green light for a 6 months IVIG trial that I just started.
Also, the VA has me doing ketamine therapy for my PTSD, and a “side effect” of that is it helps quite a bit with chronic pain.
Hope that’s answers all the questions. It’s been a wild ride, but I’m in a better place now. Also, never had this “lip biopsy” I keep hearing people talk about. They just diagnosed me off my blood work. SSAs and SSBs and ANAs and all the other stuff I don’t understand. If anyone has any other questions, fire away and I’ll try to get back to you