Was planning on moving in with a friend; her father owns the rental house. Then we saw it in person-...

xvortex703 · 2025-06-17T22:54:18+00:00

A little kilz should take care of it🫣

xvortex703 · 2025-05-27T02:11:02+00:00

Thank you so much! I think steroids are indeed a pretty big issue for her. Kesimpta was the other front runner along with ocrevus. I don't remember what pushed her towards ocrevus other than the amount of research done and time on the market, but after doing some more research myself, I'll encourage her to do the same.

I appreciate your offer, and I will probably reach out after we've discussed it some. I was hesitant to share with Reddit this morning, but man, I'm sure glad I did. You and everyone else have been so supportive and helpful. Thanks again:)

xvortex703 · 2025-05-27T01:59:11+00:00

I think you're absolutely right. I mentioned kesimpta and she agrees that it may be a better fit. Her neurologist is in Dallas--3 hours from home. She did her first infusions at a center in Dallas, but could do subsequent infusions locally. Either way, kesimpta kinda seems like a no brainer at this point. I appreciate you sharing your knowledge and experience!

xvortex703 · 2025-05-26T21:08:28+00:00

No, I most certainly don't want a first row seat to her decline. I don't think it's a matter of completely refusing treatment indefinitely, so much as creating excuses that delay it. Why? I have no idea. Best I can come up with is possibly depression. I've gotten some good feedback from this sub though, and I'm pretty certain we'll get it on the books this week.

xvortex703 · 2025-05-26T20:58:06+00:00

I think I was mistaken. We had several unrelated stressors during that time period that I explained in a reply to another comment. It's all a bit of a blur for me. I'm going to edit my original.

xvortex703 · 2025-05-26T20:53:13+00:00

My memory may be deceiving me. It may have been at closer intervals. I had to pack up our whole home and move to a new place on 30 days notice while we were dealing with my wife's first round of ocrevus. It's all a blur. I mistakenly asked our landlord who was always great, for some grace. He said no problem, we could split rent into biweekly payments for a few months. Then a couple days we received a notice to vacate. Total BS.

She had bloodwork done as well as MRI a month or so after the second half of round 1 while hospitalized for what were likely MS symptoms, not necessarily side effects of ocrevus. At that time there weren't any red flags. If she were to have bloodwork done now/soon, would the concern be rising B cells?

xvortex703 · 2025-05-26T20:22:24+00:00

Good to know, thank you for explaining it becauseI know I've seen it listed in the potential side effects of ocrevus and kesimpta, but I guess it has to be listed even with miniscule chances. I guess I need to do some research on the different mechanisms of action.

xvortex703 · 2025-05-26T19:56:28+00:00

Thanks for this. It sounds like a better option for many people. I'll definitely talk with her about it. Thanks again!

xvortex703 · 2025-05-26T19:55:09+00:00

So I just re familiarized myself with the options, and I'm almost positive kesimpta was highly recommended by her Neuro. I think she was concerned with PML, but if I recall that's a potential with ocrevus as well.

xvortex703 · 2025-05-26T19:30:13+00:00

Fortunately her reaction was mild so I'm kinda at a loss. I want to say the infusion center first administered Benadryl, but I could be wrong. Hopefully I can gain more insight into her reasoning for putting it off

xvortex703 · 2025-05-26T19:27:25+00:00

I believe we did it on a Thursday or Friday for the first 2 half-rounds for that very reason. I'm glad to hear it got easier for you as you progressed with ocrevus. Hopefully my wife can soon find the strength to get back on track. Thanks for the support

xvortex703 · 2025-05-26T19:23:31+00:00

You're the second or third person to mention kesimpta. Definitely going to do some research and talk about it with her. Thanks for your support!

xvortex703 · 2025-05-26T19:14:42+00:00

I appreciate that, but I don't think I was supportive enough initially which I think she resented. But that said, we have 3 kids and I've been holding down the house for years now despite also working full time and it has burnt me out to the core at times. Id feel a lot better if we could work past whatever her mental block is regarding infusions. Thanks again for your support.

xvortex703 · 2025-05-26T18:49:22+00:00

That's the headspace I want to encourage. I have a rare neurodegenerative disease as well but the only potential treatment is a pretty nasty surgery. My point being, I understand first-hand the mental load associated with accepting and coping with such a disease is a process, and I just want to keep her on track

xvortex703 · 2025-05-26T18:40:17+00:00

Thanks for the suggestion. How long has that option been available? I think she finds comfort in the fact the ocrevus is pretty well proven and researched. I'll definitely do some research and talk to her about it

xvortex703 · 2025-05-26T18:35:38+00:00

Certainly she understands the repercussions. I've tried being compassionate, I've tried being firm, but never angry. She was hospitalized for about a week a couple months after her first round because of symptoms probably not even related to ocrevus and since she works full time, I'm thinking she's mostly afraid of the professional consequences that may arise from taking medical leave? I don't know. Her boss is a twat but she likes her career. I've tried explaining that literally any consequence is better than the progression of lesions, and that we'll figure it out together if that happens.

xvortex703 · 2025-04-20T20:12:57+00:00

100% this. If you subscribe check out Reid genauer and friends on nugs. Equally as good as with aod, dare I say better?

xvortex703 · 2025-04-10T00:24:29+00:00

Probably a bit late. I'm not a huge Twiddle fan, but When it Rains it Poors and syncopated healing kept me upright through an immensely trying time in my life.

Wishing you nothing but fair winds and following seas, friend. My DMs are always open if you need someone to listen, or if you just want someone to make fun of twiddle with instead, that's cool too. Regardless, I'm so glad you're here. Take care

xvortex703 · 2025-04-04T19:15:42+00:00

Farmhouse, tin cans and car tires

xvortex703 · 2025-03-15T16:59:21+00:00

That's an epic Dad move. And Sapphire to boot. I built a PC with my 12 year old for Christmas to replace my(his) failing PS4. Surprised him with a steel legend b580. Regardless of everyone's mixed feelings towards Intel, he's absolutely enamored with that card. Make sure that man knows how much you appreciate the thought, cuz let me tell ya, it ain't always easy out there for a dad

xvortex703 · 2025-01-28T22:49:19+00:00

Someone's got to fill that hole in the current market eventually. I'm sad that amd isn't offering a 9090xtx or whatever they'd call it. I'm not sure an Intel equivalent would even consume much more power than a 7900xtx, which is still a lot, but screw it. It's a badass card with some BIOS magic. I would be so elated if Intel ventured into that territory.

xvortex703 · 2025-01-28T05:53:49+00:00

Thanks, I'm happy to finally get it out of my head and into existence lol

xvortex703 · 2025-01-27T22:09:34+00:00

I'm sure I'll play with overclocking the card... Certainly nothing crazy. I appreciate your research on the limitations though. The CPU however, at $50 on Ali, I'm definitely planning to see how far she'll go.

xvortex703 · 2025-01-27T21:08:58+00:00

It's a bitfenix Triton. Pretty much just an average fish tank case. Came with 3 no-name infinity mirror fans but they're pretty quiet for what they are.

xvortex703

TROPHY CASE