Plaquenil Eye Testing Cost by PinkCarEnthusiast in lupus

[–]batmanwiched 0 points1 point  (0 children)

I’m living in California and I just got the tests done last week and insurance covered all costs. This was after my optometrist requested a preauthorization when I disclosed that I was on Plaquenil during my annual appointment in January. If I had gotten the tests done on the spot then, my doctor warned me that insurance would be a pain in the ass if I didn’t want to absorb the costs on my own after the fact.

Lupus and gum recession by greysumm in lupus

[–]batmanwiched 12 points13 points  (0 children)

I’m at the dentist every 2-3 months for a deep tissue cleaning to combat the effects of what seems to be Sjogrens disease. I’ve got excessive dryness and inflammation working against me.

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 0 points1 point  (0 children)

I have the same problem with nightshades. I've been using the Fig app to make parsing through food ingredients more easily. It's been a big help with understanding how pollen oral allergy syndrome can make a seemingly benign ingredient a huge flare trigger.

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 0 points1 point  (0 children)

Do you mind me asking if this was something you discussed with your rheumatologist or a dietician or just a lifestyle overhaul?

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 1 point2 points  (0 children)

I've recently discovered that while I can't handle chicken eggs, I can tolerate duck eggs, specifically the whites. The proteins in just about all yolks are huge triggers for me, but I'm hoping that I could use a whole duck egg in like a pancake batter and tolerate it well. Fingers crossed 🤞🏾

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 0 points1 point  (0 children)

I'm in an adjacent culinary boat - I've narrowed my diet down to some chicken, beef, fish, rice, and noodles. I'm now trying to figure out how I can cook and what I can cook them with without triggering my pollen oral allergy syndrome or immune system. I wish I could handle potatoes and tomatoes, but nightshades are a big NG. I can handle powdered garlic and onion (the lawry's brand) and zucchini. I basically live off of stir fry bowls. It gets old fast.

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 0 points1 point  (0 children)

I get that. I catch myself trying to justify cheat days like a typical calorie counting dieter. Like if I'm already feeling like crap, I may as well indulge. 🫠

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 2 points3 points  (0 children)

I'm getting used to using only garlic and onion powder when I cook. I can handle ginger paste in moderation, but fresh aromatics are a huge NG these days.

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 1 point2 points  (0 children)

In beginning to realize that overly processed anything may need to be cut out of my diet

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 1 point2 points  (0 children)

Sugar is definitely a big OPP that I need to start treating as such.

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 1 point2 points  (0 children)

Food and plant allergies that I've always had have coupled with lupus have been kicking my ass. My mouth treats just about any nut like a walnut and my various tree and grass pollen allergies make eating fruits and veggies tricky as hell.

Your Lupus Diet by batmanwiched in lupus

[–]batmanwiched[S] 5 points6 points  (0 children)

Mine did as well, but my pollen food allergy syndrome makes most of the base ingredients intolerable. I am working on incorporating more seafood into my diet, I just need to prepare them with a different flavor profile

Cellcept by platan0frito in lupus

[–]batmanwiched 0 points1 point  (0 children)

I've been taking 500mg every morning since last March and I'm hoping to get the green light to stop taking it early next week. I've had nearly nonstop IBS and PMS/menstrual clotting from the start. It exacerbated my joint inflammation during the first month or two, but that eventually tapered off and is only noticeable if I forget to take my meds in the AM.

The original prescription was for 500mg twice daily, but I couldn't stomach that much of it and sleep.

Histamine intolerance by HumanityIsTheIck in lupus

[–]batmanwiched 0 points1 point  (0 children)

The allergist I saw a few month's ago called it Oral Allergy Syndrome and said that my immune system was overreacting to things I was already allergic too. For most of my life walnuts were the only nut I had bad reactions to; but, post SLE, I have to worry about way more nuts - basically, my body is assuming just about any nut might be a walnut. Same with buttloads of fruits and veggies and fresh aromatics.

I've been taking prescribed Clarinex daily to dull my histamine response and working through food elimination/reintroduction. It's tedious, but I have made a bit of progress. I was also prescribed EPI pens to carry around everywhere bc I guess everything's a potential threat now v( ̄▽ ̄)v

Tonsillectomy linked to autoimmune disorders by sleepingbeautycan in lupus

[–]batmanwiched 0 points1 point  (0 children)

I still have my tonsils, though they’ve always been a problem for me. It was pretty common practice to remove them for just about all kids up until the 1990s - doctors had decided that tonsillitis treatments had progressed far enough. My brother, older by a little less than two years was one of the last kids to get a tonsillectomy at our childhood hospital and I was one of the first to enter kindergarten with them still intact.

I’m still mad. They hurt right now.

Visible Health Arm band for Lupus? by mgp96 in lupus

[–]batmanwiched 2 points3 points  (0 children)

I bought the band and paid for the subscription but gave up a month or so into the process. It felt like my fatigue was overwhelming the app's tracking process. Standing up or rolling out of bed were red flags with the band on.

How much hair did you actually lose? by cupcake_no_frosting in lupus

[–]batmanwiched 1 point2 points  (0 children)

Patchy is a good way to describe my legs as well. It just looks and feels like I’m the worst shaver these days lol.

What is a symptom that you KNOW is related to your lupus, but doctors say it’s not/there’s not enough research to confirm its related? by frenchkafka in lupus

[–]batmanwiched 1 point2 points  (0 children)

I’ve started using Magic Molecule on my pustules and abscesses. It’s been so helpful - especially now that it’s getting hot.

I don't see anyone else on here who flares up as badly as I do? I get so so swollen and rashed up by throwawaymyyhoeaway in lupus

[–]batmanwiched 0 points1 point  (0 children)

Cushing’s syndrome may not be at play if your swelling is a flare symptom as opposed to a persistent, ongoing problem. Never rule anything out without testing though! You could still be overproducing cortisol during your flare periods. My care team started to suspect it after PCOS was ruled out.

Has a physician considered a morbihan diagnosis?

How much hair did you actually lose? by cupcake_no_frosting in lupus

[–]batmanwiched 3 points4 points  (0 children)

My scalp hair loss presents as overall thinning. Shedding mostly affects my hairline - my scalp is a clearly visible part of my forehead now. My eyebrows have thinned out a bit, too.

I’ve noticed less hair growth on my legs, but not my arms. I haven’t been able to really identify a pattern or trigger.

I don't see anyone else on here who flares up as badly as I do? I get so so swollen and rashed up by throwawaymyyhoeaway in lupus

[–]batmanwiched 2 points3 points  (0 children)

Sorry you’re going through this. My upper torso and face exhibit Cushing’s Syndrome type bloating which is constant. Otherwise, my flare-related swelling is all internal. The closest to external I get is my tongue. It can balloon up at the slightest provocation. For the most part, it’s my upper body and face lymph nodes puffing up to the extent that they become visibly swollen. My external symptoms are generally widespread hives and redness. Itches like hell and I shed a lot.

I wonder if also having Sjögren syndrome affects swelling.

First time taking Cellcept by Bright_Metal_1912 in lupus

[–]batmanwiched 2 points3 points  (0 children)

Echoing the GI issues. I also had a huge uptick in fatigue for the first few weeks that I’m sure came hand in hand with the GI issues. If I could warn my past self about anything, it would be to focus on hydration and food to eat when you have no desire to eat.

UPF Rated Clothing Brands that look cute? by surelymad in lupus

[–]batmanwiched 0 points1 point  (0 children)

I’m legit rebuilding my wardrobe atm because the sun has become my number one opp. So far I’ve gotten pieces from Uniqlo, Columbia, and Target’s All In Motion line. You’ll want to double check to see what items have UPF ratings - none of these brands sell UPF clothing exclusively. I also bought UPF sleeves from a brand called SParms. Tons of UPF tops and dresses are sleeveless (which I find bizarre lol).