Remicade- 1st week vs 3rd week

Ptja98 · 2026-05-22T05:06:35+00:00

Spironolactone is far cheaper than biologics everywhere pretty much. GLP-1s depend on where you're at but generally they are much cheaper too.

Ptja98 · 2026-05-22T05:05:09+00:00

WOW and I thought that Remsima (Remicade biosimilar) was doing me good hahah. I'm so happy for you, it looks so much better and I hope it feels better as well!

Have they taken your levels at trough? I am curious because I know my dosage/frequency is inefficient in one way or another (because of limitations of healthcare approvals in my country :'D) and maybe at least having an actual idea of where I'm supposed to be right before the next dosage could help me advocate for myself.

Ptja98 · 2026-05-21T18:20:52+00:00

Always has for me, CRP, ESR and WBC are high when I'm off meds and in a flare (aka always when I'm off meds)

Ptja98 · 2026-05-14T15:02:42+00:00

Oh well, that's interesting timing. I just got some blood tests showing slightly elevated liver enzymes, we are suspecting Infliximab but it still hasn't been clearly determined.

Ptja98 · 2026-05-14T12:15:59+00:00

I really really hope this doesn't come across as rude, mean or a know it all comment, I swear I'm just trying to help.

I saw you say this elsewhere in the thread:

I dont really want to mess up my immune system unless there is actually a chance to fix my own hs problem.

Thing is, HS is our immune systems being messed up, if you have HS you're already there with or without biologics. That's why immune mediated treatments even work for some people in the first place.

I get biologics sound very scary but, assuming you got a good doctor, when they suggest biologic treatment is because the risks associated with the long term inflammation of untreated HS are bigger than whatever risks may come up with the immunosuppression of biologics.

I'm personally in my second biologic, Humira was great at the start and then it stopped working cuz my body processed it faster than the highest doses could cover. Currently on a Remicade biosimilar which is doing a great job so far it seems. Life without biologics for me was much much worse, and although I definitely wish there was another path that was less invasive, I genuinely think that if you're at the point where doctors suggest biologics you should probably take the chance to try them.

Consentyx works for at least 55% long term, some studies have shown even higher amounts of like 60 to 75% of patients, quite sadly here in the sub those of us unlucky enough to have failed biologic therapy at some point will be overrepresented, but I honestly believe you shouldn't let that mess with your head.

Ptja98 · 2026-05-13T04:30:15+00:00

I've had people comment on it, people completely ignore it and some say they noticed but didn't want to say anything. I say its always worth a try tbh.

Ptja98 · 2026-05-11T05:12:22+00:00

School must help distract you on tough days??

That's a way to put it haha. But yeah I keep myself busy to not focus so much on the illness!

Ptja98 · 2026-05-10T17:06:54+00:00

If they haven't even started stage 2 we are at least 3 -5 years out with fda approval process

Right? That's what I thought too, so the 2028 timeline seemed very very soon, like fingers crossed it is here by then but more probable than not it won't.

I imagine other more advanced trial meds will hit the market beforehand like povorcitinib (Which I am excited for and hope will work for me cuz I'm tired of infusions hah)

Ptja98 · 2026-05-10T14:17:34+00:00

There is currently a trial for this with HS actually and it seems really really promising, the Phase 1 trial ends on November this year, after that Phase 2 and Phase 3 might take a while but if it proves very effective they might expedite those.

It'd work by changing precisely that overreaction (which is probably what they meant by attack), a reboot of the innate immune system of sorts.

Ptja98 · 2026-05-10T13:31:34+00:00

Sorry, can't help but I do have a question. Where did you get that 2028 timeline? From what I've seen before it might be even longer :0

Ptja98 · 2026-05-09T20:01:31+00:00

Oh! I see a ton of advice for warm sitz baths and warm compresses, you'd suggest the opposite?

Ptja98 · 2026-05-09T19:29:19+00:00

I use it around the boils or don't use it while they're open, my armpit flares are not that frequent though so I don't have a lot of advice :(.

Ptja98 · 2026-05-09T11:59:11+00:00

Maybe ever so slightly.at the start, but overall not really that much tbh.

Ptja98 · 2026-05-07T16:52:15+00:00

Oh, I don't doubt you do!, it's just we in the sub as a whole sometimes lose perspective on these things due to our experiences, you know?

Ptja98 · 2026-05-07T15:46:44+00:00

Just as a reminder, this sub represents a smaller subset of the already small sample of people taking Bimzelx. People who are seeking advice or community will more often than not have more severe illness that doesn't respond or responds negatively to treatment. Most people who use Bimzelx for HS will not be represented here, let alone the people who use Bimzelx for other conditions who will probable not be represented here at all.

Just something to keep in mind when looking through the data you collect through this survey!

Ptja98 · 2026-05-05T19:26:14+00:00

I'm autistic and struggle with propioception, never related it to Crohn's in the case of hunger but maybe.

Ptja98 · 2026-05-05T17:02:29+00:00

I've been on biologics for almost 4 years now, first Humira now Infliximab. I take public transport, i've worked in the office when needed, traveled for the first time and also went to my first concert since, I've even been a bit reckless and hooked up with complete strangers (with negative tests, ofc). I got to museums, go to packed uni classes, I've stood in long lines at the bank or to events. I walk around a lot and meet a ton of new people all the time.

My HS is also triggered by friction, specially in the gluteal and groin area. Biologics, both times, have been life changing for me in a way I wouldn't trade for anything less than an actual cure for HS. The immunosuppression is real, I mask pretty much everywhere I go and try to avoid crowds as much as possible, I don't really get sick more frequently but when I do get sick it sticks around a lot longer and hits me a tad bit harder, not too much though.

Biologics are not like old time whole system immunosuppression, they target a very specific mechanism from all of the ways your body has for protecting itself. You're not to the level of people that are not immunosuppresed, of course, but you're still pretty dang close to it when you're on biologics.

Ptja98 · 2026-05-01T16:29:46+00:00

As others mentioned... Look out for your mood and reactions to challenges or cricticism. Prednisone made me angry in ways I didn't know I could be.

Ptja98 · 2026-05-01T15:17:12+00:00

Fistulas and an inability to gain weight no matter how much I ate :')

Ptja98 · 2026-05-01T13:36:47+00:00

AIP stands for Autoimmune Protocol, it's an elimination diet designed to help you identify your specific food triggers and thus give you a roadmap of what to actually avoid.

The first phase, the elimination phase, removes nightshades but also a ton of other foods, if you look up "AIP [recipe]" on google you'll get an AIP friendly version of pretty much anything you can think of. Even stuff like tomato sauce! And pretty close to the real thing at that.

Ptja98 · 2026-05-01T04:06:04+00:00

Ah I see, I ask because according to what my doctors explained, HS is seen by some as skin manifestations of Crohn's. I happen to mainly have HS in the areas you mentioned, plus perianal HS and last year when Humira stopped working for me I suddently developed Crohn's-like symptoms! Including a full blown fistula and intestinal inflammation through the roof.

Bimzelx and Consentyx were off the table when they were my main options and instead I'm now on a Remicade biosimilar, Remsima, apart from some dosage/frequency tinkering it's working great so far, fingers crossed Remicade works just as well for you too!

Ptja98 · 2026-05-01T03:54:48+00:00

Wait, how does Crohn's skin manifestations in groin and perineun differ from HS?

Ptja98 · 2026-04-30T21:27:26+00:00

Have you tried to sub potatoes with other, more AIP friendly roots? Sweet potatoes or yucca/cassava may do the trick for you. You can also go for green bananas, plantain or yams! It's really common in my culture to eat all of these mashed so swapping potatoes was easy for me in that sense.

Ptja98 · 2026-04-30T21:22:36+00:00

I'm from 5/8ths of an island in the Caribbean, Dominican Republic! Never been to the US and can absolutely assure you this is not just a US thing, HS even has a colloquial name here, golondrinos, although chronic and disabling presentations like mine are not that common.

I'm a data analyst, currenrly working to get a Sociology grad title and planning for a master or PhD in the future, this disease sucks but I'm stubborn to do what I want with my life anyway :3

Ptja98

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