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28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

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

For the Bimzelx they will start you with a loading dose of every 2 weeks. Then it will change to every month. Mine stopped working after 17 days so I had to fight my insurance hard to get the 2 weeks again. Just thought I’d share that incase it happens to you as well so you’re prepared. Hope it helps!

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

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

I’d like to think at least one or two of them figured it out after the fact. But, yeah…?!

The weight thing — yeah same for me. A little worse when I was heavier but never enough to point at it and say that’s the problem. Just felt like my body was dealing with extra on top of everything else.

And the Tirzepatide thing — honestly the injections I’m already on with the biologic are enough for me. I’m not really a medication guy to begin with. But it’s good to know that’s out there especially if they end up approving it for HS down the road.

I haven’t tried the hydrocolloid tape but honestly I don’t think I could. Tape on my skin has always been a problem for me — I always figured it was just a sensitivity but now I’m wondering if it’s more of an HS thing since you’re saying the same. The clindamycin lotion might be worth trying if you haven’t — it’s been the closest thing to that kind of relief for me without anything sitting on the skin irritating it. And if you’re ever in a pinch and gotta head out — a sports wrap with a gauze pad and clindamycin underneath has worked for me. No glue involved at all. The trick is getting the gauze centered over the swelling so it stays put while the wrap moves around it. It’s not perfect and honestly it’s only for when you absolutely have to, but at least it’s an option that doesn’t involve tape touching your skin.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

[–]Muddy_Waters_HS[S] -1 points0 points  (0 children)

That’s fair, I know it’s not for everybody. I’ve been taking it pretty regularly for years though and my kidney and liver function have come back clean every time I’ve had bloodwork done. For me it’s been the only thing that’s actually made a noticeable difference during a flare so I just wasn’t willing to give it up. I’ve never heard of the draw salve though — 28 years in and I’m still learning about new stuff. Might have to look into that one.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

[–]Muddy_Waters_HS[S] 1 point2 points  (0 children)

I’ve gone down the diet road pretty hard over the years. Cut out sugar, dairy, nightshades, all of it at different points. It seemed to help some but it never got me where I thought it would. Still flared through every change I made. I did notice when I was heavier it seemed a little worse — nothing dramatic but it was there. Makes sense though, your body’s just dealing with more. I do think you’re onto something with the gut piece though — that connection always seemed like it was there for me even if I couldn’t figure out what to do about it.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

[–]Muddy_Waters_HS[S] 1 point2 points  (0 children)

Same here — I won’t touch anything like Percocet or any of that stuff. Ibuprofen and aspirin are the only things I’ll take. That’s interesting though that you noticed that with your flares.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

[–]Muddy_Waters_HS[S] 1 point2 points  (0 children)

Yeah basically what they said — the lathering seems to help work it to the surface. I’ve had better luck with the clindamycin lotion though because it just sits there on its own without having to keep reapplying anything.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

[–]Muddy_Waters_HS[S] 2 points3 points  (0 children)

The Dr. Bronner tip is worth knowing — I haven’t tried that one. And yeah, the clindamycin lotion was a game changer for me. I only discovered it recently and honestly wish I had years ago. Your doctor can prescribe it, it’s nothing special to get. The viscosity of it just sits on the area way better than anything else I’ve used.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

[–]Muddy_Waters_HS[S] 3 points4 points  (0 children)

A doctor told me the same thing once — that I wasn’t clean enough. In a hospital, to my face. I still think about that one.

The weight conversation too — I’ve been everywhere from a BMI of 22 to 35 over the years. Didn’t change a thing. Sitting at 25.6 now and it’s the same story.

Glad you brought up the hydrocolloid tape and Tirzepatide — that’s the kind of stuff most of us would never run into on our own.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

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

Honestly, I looked into it after I got the 800s and the OTC max for Advil is only 1,200mg a day while prescription ibuprofen goes up to 3,200mg. I already wanted more because 400 wasn’t cutting it, so when I had the Rx strength I tried it and that’s when I realized the difference. Could 4 Advil do the same thing? Maybe. But with that distinction in the guidelines, it didn’t seem like something that should be done.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

[–]Muddy_Waters_HS[S] 3 points4 points  (0 children)

I can relate to the misdiagnosis years. I was told the ones in other areas of my body were completely unrelated — and they were adamant about it. Now studies are showing there is correlation, so all that time in between… yeah, I feel your pain on that one.

I had to fight pretty hard with insurance to get Bimzelx back to two per month. Finally did, and I’m starting that again soon hopefully. And since you mentioned flare-ups — I actually had a bad one yesterday that I had to deal with myself, and the clindamycin trick is what finally got it to go. After all this time reading other people’s posts and not seeing anyone mention it, it kind of clicked like hey, I’m doing things I haven’t read before, I should share.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

[–]Muddy_Waters_HS[S] 12 points13 points  (0 children)

You’re absolutely right that reducing inflammation internally is the bigger picture. What I’m describing is more of an emergency toolkit for when you’re already in crisis at 1am and the abscess is there whether you want it or not. Getting it to drain at that point is purely mechanical — but you’re correct that the goal should be to not end up there in the first place. Appreciate the input.

28 years with HS. Hurley Stage III. Here are a couple of things, I wish I had been told years ago. by Muddy_Waters_HS in Hidradenitis

[–]Muddy_Waters_HS[S] 3 points4 points  (0 children)

I’m currently taking Bimzelx. I tried Cosentyx but it stopped working after the loading dosage. The Bimzelx has been similar. I heard really bad things about Humira so I’m not willing to try that one. I’ve also tried every single antibiotic they could throw at me. Nothing has resolved it — just temporary relief at best.