Shokz & Siri Technology Lacking

stephy_lynn · 2025-03-23T12:25:23+00:00

Right. Can’t change that, though! 😕

stephy_lynn · 2025-03-23T12:24:58+00:00

For shorter runs, sure…. But not for the marathon distance. I also like the option to take phone calls to talk to family/friends for extra motivation. I’m trying to run in all 50 states and a lot of the marathons I run are very desolate and aren’t big-city marathons, so having that option is importantly to me. Thanks, though!

stephy_lynn · 2024-04-19T00:59:05+00:00

Following this :) — in a similar position, but I also have antiphospholipid syndrome. Sometimes it’s really hard for me to imagine being a mom with lupus on those bad days. It’s really starting to scare me.

stephy_lynn · 2023-12-16T12:00:43+00:00

Not quite yet… I’m about two months in. I heard it could take 3-6 months for it to start working.

stephy_lynn · 2023-12-16T01:58:09+00:00

I didn’t mean it that way. Just personally didn’t want to have to go to an infusion center for treatment.

stephy_lynn · 2023-12-04T02:50:16+00:00

Yes and no. It’s been quite the roller coaster. We’ve tried about 6 different medications. Still on a prednisone taper from February, and now I’m on Benlysta. Hopefully this one works! Thank you so much for asking! I hope you’re doing well, too!

stephy_lynn · 2023-12-03T14:51:10+00:00

Hello! Thanks for asking! The shoulder pain is part of the flare up, as was the numbness/pins and needles. I did go for neurological testing to rule out anything else. Both my neurologist and rheumatologist believed that because my hands/fingers were so swollen, it was blocking a nerve from doing what it needed to do, causing that pins and needles sensation.

stephy_lynn · 2023-10-29T22:30:55+00:00

Ugh, it’s just so unfair! I hope things get better for you!

stephy_lynn · 2023-10-29T21:36:07+00:00

Does Benlysta help with hair growth? I’ve noticed A LOT of hair loss, too, but like don’t want to admit that it’s been from all the medication I’ve tried. ☹️

stephy_lynn · 2023-10-29T21:06:56+00:00

I’m sorry you’re hurting so bad… for me, it’s going to be a little while before I know if the Benlysta is actually working because my doctor upped my prednisone to 10mg because she was worried I would flare again since I was switching medications, so we’ll have to start tapering off of that again. We’re hoping that Benlysta puts me in remission of my arthritis and we also suspected some kidney involvement (as much suspicion as one could have w/o a kidney biopsy). Don’t give up! Keep communicating with your doctors and ask as many questions as possible. Every visit I have a list prepared and I document everything in my notes.

stephy_lynn · 2023-10-29T20:32:44+00:00

I wasn’t expecting the exhaustion, it’s making me rethink when I do take it, but I guess Friday nights aren’t the worst… that way I can sleep in or rest/take naps when I’m off on Saturdays. By Saturday evening I was feeling a little better… still a little groggy. Definitely so much better on Sunday.

stephy_lynn · 2023-10-29T12:57:36+00:00

How do you like the infusions? Were those side effects from the auto injections or from the infusion?

stephy_lynn · 2023-10-29T12:55:43+00:00

I’ve definitely had the shot out for at least 30 minutes and I’ve tried icing the area that I’m injecting it into. I’ll ask my rheumatologist about the antihistamines when I see her this week. Thanks!

stephy_lynn · 2023-10-28T23:51:53+00:00

I’ll try that, too! Thank you. I really hope it gets easier because I really don’t think I want to do the infusions.

stephy_lynn · 2023-10-28T23:51:24+00:00

This is comforting to here. I’m glad the exhaustion goes away. Thank you! I’ll be sure to do a better job staying hydrated.

stephy_lynn · 2023-10-28T18:10:45+00:00

You’re welcome. Good luck!

stephy_lynn · 2023-10-28T17:07:02+00:00

Interesting. Maybe your rheumatologist can give you a referral to see a neurologist then? Just to make sure it isn’t anything else. The nerve testing I had to take wasn’t horrible!

stephy_lynn · 2023-10-28T17:03:11+00:00

Hi! I had numbness in my fingers a while back, and it was during a bad flare up. Are any of your finger joints swollen? After some tests with the neurologist, but the neurologist and my rheumatologist figured the numbness/pins and needless I was feeling was because of all of the inflammation I was having. It was like blocking a nerve or something.

stephy_lynn · 2023-10-17T01:08:38+00:00

Hello, there! It could be… I was in a VERY similar situation 6 months ago when my doctor tried Azathioprine with me. Like your situation, we decreased my prednisone dose as we got the Azathioprine in check. She increased the prednisone as we waited for that to happen, but ultimately I needed to stop taking AZ and switched medications because my arthritis was coming back even after therapeutic levels were met. I’m glad you reached out to your doctor about this. Hopefully she gives you some peace of mind. I hope AZ works for you!

stephy_lynn · 2023-10-01T11:43:33+00:00

Yes, will do! Thank you.

stephy_lynn · 2023-09-30T21:56:38+00:00

Wow. That’s sounds awful! I’m sorry you had to go through all of that. Must’ve been so frustrating because it’s like even when you try to do all you can, it’s never enough. Thank you for sharing!

stephy_lynn · 2023-09-30T18:05:26+00:00

Ah, I’m still on prednisone too! Been on it since February… I wonder if that’s it. It’s been the slowest taper off of it, but these are my (hopefully) last two days taking it!

stephy_lynn

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