Various ailments coming at me
I was diagnosed with Lupus when I was 45. I am now 66. Lupus seems to be progressing and I am not pleased. I feel like a burden. My PCP that understood me very well moved away and I am not pleased with my current PCP team. I have a great rheumatologist.
I recently have been diagnosed with new nodules in my lungs and a 6mm kidney stone. I also have had my liver enzymes increasing and it is showing as chronic parenchymal disease per a recent CT scan.
I have been denied disability twice and go before the judge Feb 2nd.
My rheumatologist stopped the majority of my meds due to the liver and the pain and fatigue are back with a vengeance. I due Benlysta infusions once a month. The Saphnelo made my hair fall out.
I have had two shoulder surgeries and two foot surgeries for arthritis. Has anyone been down this crazy road with my symptoms? I have strong faith but I feel like crawling in a hole presently.
Hi,
!
First off, I am so sorry you are in a position where going off meds is necessary, but it's causing other problems. That just stinks, to be honest. Does your rheumatologist have any plan going forward? Are you taking a wait-and-see approach with stopping the meds?
Also, I am sorry your former PCP left and you are not clicking with the new PCP team. It can be hard to build a new relationship with a doctor, especially if your previous doctor was such a good fit for you and your needs. And, I know it's not always easy to switch doctors, depending on your the availabilty of doctors in your area and whether they are in network or not.
I know you are not alone in this. Sometimes, the deluge of symptoms is just too much and it feels like you can't get out of that hole. This article is a bit of a pep talk (though I kind of hate calling it that) for folks just tired and overwhelmed by their Lupus -- https://lupus.net/living/okay. It's not a "just cheer up" kind of piece. It's more of a "Darn right, you're feeling overwhelmed and that's ok!" kind of thing.
I do hope other community members chime in here, as I know you are not alone in this when it comes to dealing with a tidal wave of symptoms. This piece is about Lupus flares, but I thought you might find the sentiment (and the many member comments following the piece) relatable -- https://lupus.net/living/dark-flare. I do hope you and your doctor are able to get a handle on some of these new issues popping up and that your pain and fatigue can be treated (a tall order, I know).
Gentle Hugs, Erin, Team Member.
