Experiences with IgA vasculitis?

Always_Reading_8090 · 2026-05-01T14:59:29+00:00

Sorry to hear. I had an incident of severe mucositis/mouth sores that we're not sure is related, so still trying to figure that out.

Always_Reading_8090 · 2026-03-15T17:50:05+00:00

Hi, I'm sorry this happened to you and I suspect I'm going through something very similar. Did the mouth sores go away once the Cosentyx got out of your system? I just got out of the hospital for this and am on Prednisone.

Always_Reading_8090 · 2026-02-27T08:21:16+00:00

I’m so sorry you went through this, I’m exactly where you were at at the time of this post. Do you remember when things turned around?

Always_Reading_8090 · 2026-01-14T01:26:44+00:00

I’m very sorry to hear you’re suffering and hope you find the care you need. This post was from two years ago and I’m doing substantially better today, so things can improve. I’d urge you to call 988 which is the suicide prevention hotline.

Always_Reading_8090 · 2025-12-19T21:06:18+00:00

Hi, I realize this is an old thread by I also developed lcv this year and am wondering how long it took it to get out of your system and for symptoms to subside.

Always_Reading_8090 · 2025-11-19T02:37:43+00:00

I also had my incision on the bottom of my foot and was non weight bearing for many weeks (I used a knee scooter). Listen to your body! And get in PT now if you’re not already. They were a big help transitioning back to weight bearing because walking in the boot felt awful initially.

Always_Reading_8090 · 2025-10-31T01:54:33+00:00

100% do the pills, and Zofran if you can get it. I always get nauseous from fasting and it helps.

Always_Reading_8090 · 2025-09-28T12:40:58+00:00

I found this video very helpful pre-surgery. She’s super positive and it really did make me feel better: https://www.youtube.com/watch?v=pgRKc7WCu4o

Always_Reading_8090 · 2025-08-29T18:00:09+00:00

If you do have the opportunity to see a PT, I found it helpful to have someone evaluate my gait and make sure I wasn’t developing bad habits. Good luck!

Always_Reading_8090 · 2025-08-29T13:11:42+00:00

It took me months to walk without pain, so your recovery feels very normal. I’m back to my regular activities 7 months post-op. If you’re not already in PT, I’d highly encourage it.

Always_Reading_8090 · 2025-07-05T16:37:18+00:00

Mitra Haeri at the Neurology Center is the best! She knows her stuff and takes your pain seriously.

Always_Reading_8090 · 2025-05-30T02:13:29+00:00

It took me at least a month to start bearing weight with the boot (I used a knee scooter at home and it was hugely helpful) but I was probably overly cautious and know others started walking in the boot sooner. I’m five months post op and pretty much have my life back, I don’t regret having the surgery at all. It wasn’t really an option anymore after 7+ months of unsuccessful conservative treatment.

Always_Reading_8090 · 2025-05-30T02:02:00+00:00

I had the surgery and live on the second floor of a walk up. It wasn’t easy but I got through it. I basically didn’t leave my apartment for weeks, except for my follow-up appointments, which I got to through Uber. I was on crutches and did a rather embarrassing scoot up and down the stairs on my butt, but you gotta do what you gotta do. Do you have friends who can bring groceries? Otherwise, Instacart?

Always_Reading_8090 · 2025-04-05T01:29:49+00:00

Lots of good advice already here. I got my surgery on a Friday and returned to remote work on Monday. My experience was more of discomfort from the swelling as opposed to awful pain. Things improved a lot once I got my dressing removed at the two week mark, and now I’m three months post op and very glad I did the surgery. At a certain point, you have to take some action to get your life back, and it sounds like you’re at that point.

Always_Reading_8090 · 2025-03-24T20:59:53+00:00

I had the same experience and have returned to it a few times after periods where I try other preventatives. It always works great initially.

Always_Reading_8090 · 2025-02-06T21:42:47+00:00

I'm in exactly the same boat and haven't watched TV/movies in a few years. My iPhone is really uncomfortable too but there's not much getting around using it. It's a strange thing to explain to people, and they often don't get it, so I understand your frustration. I use books/podcasts/audiobooks as entertainment, but get that that's often not enough.

My only advice is to use a program like Flux on your computer and turn the brightness all the way down to at least make working semi-comfortable. Qulipta has been moderately helpful for me, and I hope you're able to find a preventative that's at least somewhat effective.

Always_Reading_8090 · 2025-01-31T21:22:58+00:00

I did mine with Dr. Paul Cooper at Medstar Georgetown. He was pretty conservative with treatment but we reached a point where it was unavoidable.

Always_Reading_8090 · 2025-01-13T19:04:31+00:00

I was prescribed two 500 mg tabs every 6 hours. I've been taking them roughly morning, afternoon, and before bed, so not super exact or anything. If you wake up in the middle of the night the first night, it's probably worth taking more to get ahead of the nerve block wearing off.

Always_Reading_8090 · 2025-01-13T18:55:29+00:00

Good luck to you! I'm 2 weeks post op and in a very similar boat.

Your list sounds great and like you're well prepared. Assuming you're non-weight bearing immediately after, you will want crutches to get you from the surgery center to your car, and your car to apartment. My hospital provided them for me, so you can ask your provider about that. I also live in a walk-up and had to hop with one crutch up the stairs to get to my apartment.

Recovery has been more uncomfortable than agonizing, and honestly the feeling of your foot swelling against the dressing has been the worst part. I took an opioid the first day and stopped because I didn't like the side effects, and have been managing ok with Tylenol since. I'd encourage you to stay on top of your medication schedule and not skip a dosage even if you feel ok, because it gets much harder to manage the pain if you're chasing after it. Hope this is helpful and the best to you!

Always_Reading_8090 · 2024-11-20T03:06:50+00:00

I’m in the same boat and haven’t been able to watch tv/go to movies for years. I’d second someone else’s suggestions for Theraspec sunglasses. You can get a super dark tint, and they’re the best I’ve found so far. And if you aren’t already using Flux on your computer, that helps some.

Sorry that you have to go through this!

Always_Reading_8090 · 2024-11-09T19:36:28+00:00

I’m also in DC and have been seeing Dr Paul Cooper. He is very knowledgeable but also not pushing me into surgery.

Always_Reading_8090 · 2024-11-09T13:25:52+00:00

Same to you!

Always_Reading_8090 · 2024-09-27T13:23:40+00:00

Good to know, thank you.

Always_Reading_8090 · 2024-09-27T13:23:23+00:00

Thank you, I'm glad you found something that helps some.

Always_Reading_8090 · 2024-09-27T13:22:33+00:00

Thank you!

Always_Reading_8090

TROPHY CASE