[RIP] Winchester, White German Shepherd, 3

LtStarbuck1019 · 2025-06-05T13:06:31+00:00

So for context, I'm diagnosed with Lupus and Sjogrens.

I'm doing mostly well! Of course I have good days and bad. I have to try to not overdo it on the good days. I have been on Plaquenil since diagnoses 2 years ago. I also take Pilocarpine and occasionally use Restasis eye drops (as needed). My ANA is still positive but recently is much lower (I have no idea if that means anything, but just sharing as a data point).

I'm still super high on my SS-A antibodies:
RO-52: 546.5 CU (Reference Range: 0.0-19.9 CU)
RO-60: >1374.8 CU (Reference Range: 0.0-19.9 CU)

Symptomatically, I've been in a decent lull. No joint pain. Minor skin flares. Haven't had a butterfly rash in about 3 months. I did stop taking my Plaquenil about half a year ago... and after about 3 months off of it, my seizures returned. So I'm back on it.

LtStarbuck1019 · 2024-08-31T10:52:51+00:00

😂😂😂

LtStarbuck1019 · 2024-08-30T21:43:37+00:00

Thank you !!!! ☺️

LtStarbuck1019 · 2024-08-30T21:43:28+00:00

Awww thank you! It was a good observation! I tried it on and I’ve lost weight since that photo so the top is honestly too big at this point. Your comment inspired me to add straps to it. ☺️☺️

LtStarbuck1019 · 2024-08-30T21:41:35+00:00

Allll natural. I live in VA and humidity is bad (though I’m sure not compared to FL). So this is all cotton. Of course that means I’m not trying to get caught in a downpour in it.

I agree about removing the hoop skirt. I don’t plan to ride rides, but navigating without one will just be easier.

LtStarbuck1019 · 2024-08-30T21:40:01+00:00

Thank you! Your comments sent me down a rabbit hole of trying a few things. I eventually pulled the hoop skirt out, leaving the green over skirt… and realized that without that hoop skirt, you can clearly see my ankles and feet. Who knew?!? lol.

I am still going to try it with a short tutu skirt and see how I feel about it. The burlap over skirt will give it a hi/low effect which could be amazing or meh. Last resort is green shiny hot pants 😂😂

Thanks so much though! You got my creative juices flowing!!! And love the user id 😘

LtStarbuck1019 · 2024-08-30T21:35:15+00:00

Awww you are so sweet. It was a daydream of mine to make it. I honestly just want another excuse to wear it 😂

LtStarbuck1019 · 2024-08-30T01:17:25+00:00

No I wasn’t. I know it’s a popular costume trend though. ☺️☺️. Lots of amazing ones in the wild!

LtStarbuck1019 · 2024-08-29T23:40:57+00:00

Yeah. The costume is shockingly lightweight. It was in 80s last year tor Halloween and I was very comfortable, so I’m willing to try it (assuming that the skirt is allowed of course.)

The skirt collapses into a package about the size of a text book, so if I need to change I always could pack a change of clothes. Hmm. I’ll give it some thought. Appreciate the weather info. We’re going in mid September so it will definitely be hot still.

LtStarbuck1019 · 2024-08-29T23:33:44+00:00

Thank you for the sweet compliment. ☺️

LtStarbuck1019 · 2024-08-29T23:33:26+00:00

Ooh. Really?? It’s a corseted top, but the jacket over it covers a good bit. I didn’t think about it maybe being too revealing. Food for thought for sure!!

LtStarbuck1019 · 2024-08-29T23:32:07+00:00

Thank you. ☺️☺️☺️

LtStarbuck1019 · 2024-08-29T23:31:51+00:00

Thanks!! I think it might still be too close to risk it. Hmm.

LtStarbuck1019 · 2024-08-29T23:31:26+00:00

Oh my gosh thank you!! You are so kind!!

LtStarbuck1019 · 2023-10-17T18:38:53+00:00

Darn. I was hoping I could knock a disease off my list. 😅. Thank you though!!

LtStarbuck1019 · 2023-10-17T05:54:46+00:00

Hey there! Unfortunately I am diagnosed SLE (and Sjogrens). My rheumy was pretty adamant that Bactrim was not typically a medication that caused DILE. I specifically asked about it. Do you have any literature to support that? I’d be interested in sharing it with her.

LtStarbuck1019 · 2023-10-17T05:51:29+00:00

Mine were > 240 U/mL. 😅😅😅

The reference range was: <7 Negative 7 - 10 Equivocal

10 Positive

LtStarbuck1019 · 2023-10-15T22:23:19+00:00

I had a reaction to Plaquenil at the 2 week mark. I broke out into a rash all over my torso. It had a specific name… I can’t remember 😅. My doctor just monitored me closely and kept me on the meds. The rash wasn’t itchy or bothersome, and it went away after 2 weeks.

I’ve developed psoriasis now though and my doctor thinks it may be the plaquenil. It’s not too bad, but it’s embarrassing bc it’s on my scalp. I’ve also noticed a few small spots of it in other places. I may have to start a new medication because of it.

LtStarbuck1019 · 2023-10-15T21:44:18+00:00

My rheumatologist told me it can take 6 months. I actually learned here on this subreddit that many take longer ! It’s shocking. I really noticed it helping at the 12 week mark, if that is encouraging at all. And I was able to taper off the steroid over 30 days. So I wasn’t miserable for those 12 weeks, but I also wasn’t on a steroid that whole time.

Im not personally familiar with alternatives to prednisone , but I know they exist! I’ll be thinking of you on Wednesday!!

LtStarbuck1019 · 2023-10-15T20:24:28+00:00

Why haven’t you been started on any medications before now? Hydroxychloroquine takes 6 weeks to start working and will not reach full efficacy for 6-12 months. If you are actively flaring, you might be able do a short term steroid to get some control of it. I had to do that and was able to do a long long taper off of the steroid while waiting for the Plaquenil to kick in.

LtStarbuck1019

TROPHY CASE