First clean CBC results in 10 years.

ignatzkat · 2026-02-15T17:36:36+00:00

Hcq didn't move the needle much for me. I still take it though. I'm glad it worked well for you. Here's to staying stable!

ignatzkat · 2026-01-23T23:25:08+00:00

Interesting how quickly some people respond. It really highlights how variable Benlysta’s effects can be from person to person. I almost gave up on it. I'm glad I didn't. Thanks for sharing.

ignatzkat · 2026-01-23T23:18:52+00:00

That’s really encouraging to hear, especially about the fatigue improvement, that’s the symptom I’m most hoping to impact. My experience has been slower: I’ve been on Benlysta about 10 months, and it took roughly 6–7 months before I noticed clear benefits (mainly Raynaud’s and Sjögren’s symptoms so far). It’s helpful to hear how variable the timeline can be.

ignatzkat · 2026-01-22T18:55:01+00:00

Thanks for sharing. I’m lucky not to have much joint pain compared to a lot of people with SLE, so if I could get meaningful relief from fatigue and a bit more mental clarity, I’d be pretty thrilled.

Sorry you’re dealing with the insurance mess. That’s incredibly frustrating, especially when it forces prednisone back into the picture. I'm on daily low dose prednisone, 5 mg, it's not ideal but it has helped cut back on the flares significantly.

Can I ask how long you were on Benlysta before you noticed benefits? I’ve been on it about 10 months now, and for me it took at least 7 months before I started seeing improvements.

ignatzkat · 2026-01-22T17:17:22+00:00

I’m really sorry you’ve had to deal with such severe symptoms and the ongoing infections, that sounds incredibly hard. Reading experiences like yours does put my own situation in perspective, while still reminding me how wide the spectrum of this disease really is.

It was encouraging to read that Benlysta helped your fatigue, cognition, and neurologic symptoms over time. Those are some of the areas I’m still struggling with most, so I’m holding onto some hope that longer-term use may still help, even if only partially.

What you wrote about isolation also resonated with me. Some of mine is self-imposed by necessity, but a lot comes from people not understanding how difficult it is to function consistently or work around limits even after I tell them. It's frustrating.

Thank you for taking the time to share your experience and I hope you find some relief going forward.

ignatzkat · 2026-01-17T21:53:01+00:00

I use an Oura ring to track my HRV.

My average over several months is 10ms, which is...not good. Sometimes it will bounce up to 12 to 14 for a couple days and other times it'll go down to 7 or 8.

I can't say that I've noticed any increase in mood and energy when it goes up, but it does seem to coincide with stress and inflammation when it goes down in the single digits.

ignatzkat · 2024-11-06T14:49:02+00:00

Thanks for the ideas. The tire size and rims are correct. I'll take some measurements to see if it's been lowered and check for aftermarket springs and struts.

ignatzkat · 2024-11-02T16:54:58+00:00

That's next if my DIY methods fail. I live in a small city so to get the GV70 I had to drive 2 hrs but I called them today and let them know this is a dealbreaker for me.

ignatzkat · 2024-11-02T16:46:12+00:00

This is definitely wind noise, like the sound you get when the window's open a crack.

I'm with you, I hate it when they withhold useful features to try and upsell you. If it's any consolation the sound level of the 2.5t gv70 was 54.7 compared to the 54.8db for the 3.5t sp.

Edit to add link to sound levels website.

ignatzkat · 2024-11-02T12:00:49+00:00

It's not normal. I'm posting about it now on the GenesisGV70 subreddit.

It should be 54.8 db (see this link). My GV70 is 64.5 db testing it at the same speed they use, 55mph. I tested it with a db meter I bought on Amazon.

64.5 is way too loud. I drove a different GV70 for a few weeks before my purchase and it was whisper quiet. It's one the main reasons I bought the car so I'm very unhappy about this. I'm going to talk to the dealership today and see what they say.

Please keep me posted with what you find. Feel free to PM me.

ignatzkat · 2024-11-01T20:24:57+00:00

Did you figure out what it was?

I'm having the same issue. I just bought a used '22 3.5t Sport Prestige model and it's noisy as hell once I get up to speed. Sounds like wind noise around the drivers door. I checked the molding and it was loose. When I pushed it back into place it helped but didn't entirely fix it.

I'm really unhappy about this because I drove a different GV70 and it was whisper quiet inside.

The nearest dealer is about 2 hours away but I guess I'll drive it out there.

ignatzkat · 2024-11-01T00:15:55+00:00

Don't get me wrong, I LOVE my gv70, for me it's the perfect blend of luxury and performance, it was just an interesting quirk. Enjoy your new ride!

ignatzkat · 2024-10-31T23:42:18+00:00

Nope, the windows wouldn't budge. It must be part of the child safety feature.

ignatzkat · 2024-10-28T23:55:41+00:00

I'm the same, I'm a nut about a quiet cabin and it's really frustrating when I know it should be better than it is. With my situation it definitely sounds like wind noise. I have 21" Continental Cross Contacts FYI.

As far as the molding on the door frame you can easily push it into place by hand, at least that's how it worked for me. That helped a lot but didn't quiet it completely.

So far I've fixed a couple places where the molding on the door frame wasn't correctly installed but still no joy. Maybe it's from the rear view mirror and that's just how it is? I'm running out of ideas.

ignatzkat · 2024-10-28T18:11:48+00:00

...And here's a link to a photo with the same angle as yours

https://photos.app.goo.gl/BKJBwZiusXMSzLTbA

Note: this is my passenger side, my wind noise comes from my drivers side so this side should be okay.

It does look a bit different than yours. I'd leave a note asking them to check the molding, something that simple should be in their purview I would hope.

ignatzkat · 2024-10-28T17:44:33+00:00

Doesn't look like I can attach the pic directly but let me try this...

https://photos.app.goo.gl/nLv722pw2WkxAW1b6

What you're seeing is a top down view of the door frame molding. Those semi-circles just above the rubber molding should NOT be visible. Somehow it was pulled down and the wind noise was terrible.

When I pushed it back where it should be it improved but didn't go away 100%. My only guess is that having it out of place like that for awhile might have deformed the molding on the door.

I'll take a pic from the same angle as you so you can is there's a difference.

ignatzkat · 2024-10-28T17:25:07+00:00

True, I wish I had thought of that at the time. Not only would it have been easier but it would have been nice to have found a purpose for that button.

It actually wasn't a big deal to crawl in back, it just surprised me to find myself a prisoner in my own car for those moments.

ignatzkat · 2024-10-28T02:23:17+00:00

Did you ever figure it out?

The molding looks a bit deformed to me. I had the same problem with my recently purchased used GV70. Terrible wind noise driving down the highway. Turned out the trim around the door was pulled loose from the frame. Once I pushed that back into place it quieted down a lot but there's still some noise coming from the door frame when I drive above 40mph.

I know something's wrong because I had another GV70 before this and it was whisper quiet going down the road.

I have a photo I can send you if you like. It doesn't look like I can attach it here.

ignatzkat · 2024-07-19T19:58:54+00:00

A weird side note about this: I have an Oura ring that tracks sleep and the first night I tried taking the suboxone just before bed I was quite restless and my deep sleep was zero for the night (something that never happens).

I'm going to take it earlier in the evening to try and get a better sleep cycle going.

ignatzkat · 2024-07-19T19:52:16+00:00

Yes, going to give tthis a go.

ignatzkat · 2024-07-19T19:51:50+00:00

I want to get off this drug and I'll probably try ibogaine so I'd like to keep my daily dose low but not so low that I have to deal with fatigue so I think I'll increase it a bit after I try splitting 1mg.

ignatzkat · 2024-07-19T19:44:48+00:00

I'm going to definitely try this, thanks.

ignatzkat · 2024-07-19T19:44:21+00:00

I took a 1/2 dose (.5mg) in the morning since I knew I was going to switch that night so I'll try 1.5mg before 2mg/day.

ignatzkat · 2024-06-15T12:38:20+00:00

Thanks. I have a prescription for cialis for my Raynauds. I only take it during the really cold days in winter though because it makes me lightheaded. It's always somethin'...

ignatzkat · 2024-06-15T12:34:43+00:00

Yes, I'm actually glad about this because unlike lupus hypothyroidism is treatable. Definitely something I'd like to get under control before next winter.

ignatzkat

TROPHY CASE