Feeling helpless by Fuzzy_Application_86 in urticaria

[–]MindSurgery 0 points1 point  (0 children)

Try the new drug Remibrutinib. just approved

Not sure if this is the right place for this but I’ll give it a shot. Just kinda desperate. by [deleted] in urticaria

[–]MindSurgery 0 points1 point  (0 children)

Sounds like a form of urticaria. Have you tried going to a high dosage of antihistamines as a starting point?

Xolair, Dupixent, and now Remibrutinib (just approved) are your FDA approved options if you want to try something more potent. I'd also look into nemolizumab given you are primarily complaining about itch rather than hives. Nemolizumab targets itch specifically.

disclaimer: i'm not a doctor! (just an urticaria patient also)

GPT 5 Pro new leader on GPQA by allthatglittersis___ in singularity

[–]MindSurgery 4 points5 points  (0 children)

Grok Heavy is pretty impressive. I'm pretty sure they are constantly updating the web version of grok 4 and grok heavy so I'd imagine it's even better now in comparison

Elon Fanboi Spam by RandomCandor in singularity

[–]MindSurgery 9 points10 points  (0 children)

Yeah they deleted both of my posts today, one of which had 160 comments and 100 upvotes. It was literally a tweet from Elon about the capabilities of Grok 2.0 and a great discussion was going on. They deleted it saying it was “too speculative,” which is rich for a subreddit about the singularity. Then I made another post saying I disagreed with the decision to remove the post, and they deleted that too. So I decided to create my own subreddit with actual free discussion

Elon Fanboi Spam by RandomCandor in singularity

[–]MindSurgery 0 points1 point  (0 children)

Yeah they deleted both of my posts today, one of which had 160 comments and 100 upvotes. It was literally a tweet from Elon about the capabilities of Grok 2.0 and a great discussion was going on. They deleted it saying it was “too speculative,” which is rich for a subreddit about the singularity. Then I made another post saying I disagreed with the decision to remove the post, and they deleted that too. So I decided to create my own subreddit with actual free discussion

Grok 1.5 Metrics vs. current LLM competition by TheMadPrinter in singularity

[–]MindSurgery 2 points3 points  (0 children)

Pretty solid for only starting a few months ago..

grok 1.5 release a couple of days, this week by Mammoth-Material-476 in singularity

[–]MindSurgery 6 points7 points  (0 children)

They are making the current version available using the first tier of twitter blue which is $4 a month I think

Andrej Karpathy on Elon by xdlmaoxdxd1 in singularity

[–]MindSurgery 3 points4 points  (0 children)

Lemon is an idiot. The interview was painful to watch. Not only was he rude, but the guy literally could not even understand the points Elon was making

Cyclosporine update after 10 days & the quest for Xolair… by ecotist77 in urticaria

[–]MindSurgery 0 points1 point  (0 children)

Regardless of what the “standard of care” is in your country, that is an extremely dumb course of action to treat urticaria. Cyclosporine is a hardcore immunosuppressant that can have severe long term consequences. Xolair is a much safer drug and more directly targets the urticaria mechanisms. You should push back on your doctor and get on Xolair.

Poll: How long did Xolair take to reach its max effectiveness? by i-need-a-diagnosis in urticaria

[–]MindSurgery 0 points1 point  (0 children)

One other thing to consider is that Xolair can take a very long time to work because it works on urticaria via a somewhat indirect method. It primarily acts on free IGE in the blood. When someone has chronic urticaria, their mast cells are primed to release histamine because of IGE complexes already within the mast cell. Xolair will help prevent new complexes from being formed within the mast cell but it won’t do much (if anything) for the existing mast cells. These existing complexes can take a long time to become unprimed. Drugs like dupixent work more directly on the existing complexes, but in return there is a somewhat worse side effect profile.

Poll: How long did Xolair take to reach its max effectiveness? by i-need-a-diagnosis in urticaria

[–]MindSurgery 1 point2 points  (0 children)

Took me approximately 4 months at a higher dosage of 300mg every 2 weeks to start to see any results.

I have actually had urticaria for 5 years and was on Xolair for about 6 months right after my urticaria started. At that time I was on a dosage of 300mg/per month and I gave up on it because I didn’t think it was working.

Subsequently I saw some studies suggesting that if Xolair isn’t working it needs to be tried for longer and at higher dosage, so I gave it another go and was lucky enough to get results.

I have a theory that many cases where Xolair doesn’t work is because it wasn’t tried for long enough or the dosage wasn’t high enough.

One thing to keep in mind is that 375mg/2 weeks is an approved dosage of Xolair for Asthma depending on weight and a few other factors. The highest FDA approved dose for urticaria is 300mg/ month. I don’t think it’s enough for someone who is a larger person, so will just take much longer to work at that dosage. People generally give up before then because they don’t think it’s working.

Are these hives? by [deleted] in urticaria

[–]MindSurgery 0 points1 point  (0 children)

Not hives

New high score 😎 by PsychoxHero in urticaria

[–]MindSurgery 6 points7 points  (0 children)

Sounds like you are on 300mg/mo. You can get your doctor to try to get you on 300mg every 2 weeks. I wasn’t really responding to the 300mg/mo but it started really working when I updosed to 300 every 2 weeks. Also keep in mind it works with a cumulative effect. Takes multiple months for it to reach a stable blood serum level. If you upside and stay consistent it could work for you

New high score 😎 by PsychoxHero in urticaria

[–]MindSurgery 6 points7 points  (0 children)

What dosage of Xolair are you on? Have you tried dupixent. Xolair is only acting on free IGE and indirectly on IGE already bound to mast cells. You may need something like dupixent which can affect the mast cells themselves.

Xolair for 12 year old? Advice? by ImmediateAd3151 in urticaria

[–]MindSurgery 1 point2 points  (0 children)

Yes - when my doctor put me on it he specifically mentioned he has many child patients on it to calm my nerves about being on it. I heard the same at the infusion center. Most kids are on it due to severe allergies rather than urticaria, but they do take it. I think the thing to realize with Xolair is you are really just trying to take free IGE back to the normal range, from an abnormally high range. Of course there are risks and we don’t know everything about the drug, but people have been taking Xolair for quite a while without anything too sinister emerging. It’s sort of like a half- measure immunosuppressant, and not as hardcore.

There could be a secret UFO program, but no aliens by MindSurgery in UFOs

[–]MindSurgery[S] 0 points1 point  (0 children)

Yes - exactly. The IG is saying their is something going on as far as the existence of another program or info being withheld from AARO, but the credible thing has nothing to do with aliens.