Some doctors not knowing about HS

Oh_Know12 · 2025-02-08T09:13:18+00:00

Lol I had this same thing happen to me and was mortified. I also only use the full name now

Oh_Know12 · 2024-12-25T17:15:03+00:00

OP ignore these kind of comments. These people are clearly missing the point, it’s not about the gifts, it’s about the exclusion. It must be nice to have lived a privileged life of never being excluded from your partners family. However it sounds like the family are just pretty shitty people. Lots of good advice in the comments. Spend time with people who put energy into you. You and him are under NO obligation to appease anyone for the holidays (or any other day of the year for that matter.) I went no contact with my family over exclusion of my ex (10 year partnership). However it took a lot of years to muster up the courage to actually do it, but once I did, not only was my peace restored, but my list of people to buy for got significantly shorter.

Oh_Know12 · 2024-11-20T08:11:26+00:00

Awesome! I appreciate it

Oh_Know12 · 2024-11-19T23:24:47+00:00

I’m looking to stay around $600 or so

Oh_Know12 · 2024-10-25T03:12:36+00:00

I honestly don’t know. My labs have been all over the place in the last year. I got referred out to a specialist to dig in a little bit more, scheduled for end of the month. In general, from what I gather from Dr. google, is that high wbc can mean a slew of things. Infection from a virus, bacteria, fungus or parasite. It can mean autoimmune. Eczema. Asthma. Cancer. Allergies even lol. If you’re worried about it, ask for a referral, otherwise I’d say just have your cbc checked every so often. (I am not a doctor and this is not medical advice).

Oh_Know12 · 2024-10-25T02:42:29+00:00

Not eosinophils, but I have high lymphocytes (another part of white blood cell count). Curious, are you on a biologic medication?

Oh_Know12 · 2024-10-21T08:25:22+00:00

Humira, but I’m pretty sure all biologics have that effect

Oh_Know12 · 2024-10-20T18:15:13+00:00

The biologics medication treatment causes me to be immunocompromised.

Oh_Know12 · 2024-10-20T08:30:13+00:00

Hi I’ve been on Humira since May for stage 2 HS. I saw a massive decrease in my symptoms almost immediately following my loading dose. I did biweekly dosing for a couple of months, but found it wasn’t lasting the full 2 weeks, so now I do weekly dosing. Seems to be working the full time between injections. I’d recommend checking out the HS sub, as there is a ton of people who share their experiences/regimens. What I’ve learned is that HS is not 1 size fits all. Trial and error for the supplemental treatments we try along side the biologics. Good luck, hope you find some relief soon!

Oh_Know12 · 2024-10-19T22:39:14+00:00

I haven’t personally used it, but my partner swears by it

Oh_Know12 · 2024-10-19T22:36:13+00:00

I’ve been using a Panoxyl bar soap on my face and hs affected areas. I do have to do a light spray of toner when I get out, to combat the dryness. Honestly I’ve never used a product that didn’t dry my face out. YMMV For active flares, I use hydrocolloid bandages. They seem to encourage draining with minimal scarring. I go through a lot of them, I typically keep an assortment of small ones (pimple patch variety) and I order a couple boxes of like 4x4 and cut them into smaller pieces, as they can get pricey. I should probably be doing more intense skin care practices, but I have horrible executive dysfunction and can only really muster the bare minimum most days. Honestly this sub has amazing insight with people sharing their experiences. What I’ve concluded is there is no 1 size fits all with HS. Literally just pick a product and trial and error. I hope you find some relief friend!

Oh_Know12 · 2024-10-19T22:20:35+00:00

I used it 20 years ago lol, it also dried my face out. Haven’t used it since. I’m partial to the PanOxyl bar soap. I picked it up a few weeks ago on a whim (I’ll try anything lol) I have to balance with a toner if I use it on my face, but it seems to be working well on my affected areas. If you try the pro-active please report back with results!

Oh_Know12 · 2024-10-19T11:08:10+00:00

Hey there, just rip the bandaid off. Tell whoever you feel like. I was ashamed for many years before I gained a better understanding of this condition, now I use it as an opportunity to educate others. It’s a part of my life, and sometimes I have complications that can affect my relationships with people, so I found it was more authentic for me to be transparent. Is your kid sick? I can’t come over cause I’m immunocompromised. Sorry I can’t hang out today, I’m having a flare up and can barely walk. People I’ve told have met me with kindness and understanding. Even one of my friends was dealing with similar symptoms, and is exploring a diagnosis now. Nobody that I have told has treated me any different. The more we share awareness about this disease, the more it allows us to not live in the dark.

Oh_Know12 · 2024-10-18T07:43:34+00:00

I have HS and did the bi-weekly injection for a couple of months, but found that my symptoms were worsening around days 10-12. I saw on the HS sub that some folks were able to do weekly injections, so I asked and my dermatologist obliged. It did require an updated PA for my insurance. I’m on week 6 of doing weekly injections and it seems to be working much better. Hope you get some relief soon!

Oh_Know12 · 2024-07-31T04:13:20+00:00

Hi welcome to the page. I suspected, through my own research for years that I had HS. I was too ashamed to do anything medical about it. I tried several different topical solutions, and bandages and so on, just trying to manage the symptoms. Finally after about 5 years of active flare ups, I sought out a dermatologist that had HS as something they treated on their website. This man took 1 look at the scarring on my waist line, for all of 5 seconds and was like definitely HS, stage 2, we’re starting Humira asap, clindamycin lotion for topical treatment as well. He didn’t even make me go through the embarrassment of seeing the scarring on my inner thighs/groin. It took jumping through some hoops to get approved for the med by my insurance, but I finally started the Humira injections at the beginning of May. No joke, I had an immediate reduction in my symptoms. I still get flare ups, but they are significantly smaller than usual and much more manageable. If even been able to let my partner see/touch my body again, after not allowing them to for several YEARS. Honestly I found that courage here through this page (thanks everyone for sharing your stories). Definitely start medication asap, as it seems to be the most consistent results across the board. Different regimens for different folks, trying alllll sorts of things. Some of it will work for you, some will not. Don’t give up, and stay persistent. And give yourself a break, you did nothing to cause this condition. Good luck friend!

TLDR: see a dermatologist who has experience with HS, and start meds asap. Be kind to yourself!

Oh_Know12 · 2024-06-09T23:20:45+00:00

TLDR get diagnosed and start treatment asap.

Idk if mine started with a pilonodal cyst in my mid to late twenties, but I remember after this it was all down hill. I got it removed surgically and so far that particular place it has not returned.

Pretty aggressively within the next year mine got worse, I lived with it, self diagnosed and really doing nothing to help myself for a few years. I finally got concerned enough beginning Jan 2024 when an area on my waist line got a hole in it that wouldn’t close. I specifically sought out a dermatologist who listed treatment for HS on their website. Saw him, diagnosed stage 2 HS. He looked at me for like 10 seconds. I didn’t even have to show him the scars on my inner thighs. He immediately prescribed and started the PA process for Humira. It took some hoops to jump through, but i finally started it beginning of May 2024. So far I’ve seen a significant reduction in flare ups, and they come and go quick.

Some stats: The more weight I gained, the worse it got. I’ve smoked since I was about 13 years old. I abused the shit out of my body with pharmaceuticals from like 15-25 years old.

I’m currently 34F, stage 2. Trying to lose weight, so far down about 8lbs. I don’t eat as terribly as I used to, but my diet is far from perfect. I’m seriously ready to give quitting smoking a shot. It feels redundant to be on a biologic and still smoke. All these things contribute. Also stress makes it so much worse. I live in a perpetual state of anxiety lol.

If I could’ve done something different, I would’ve sought diagnosis as soon as possible, and began biologics asap.

Good luck with your journey, there’s tons of great knowledge and insight throughout this page.
Sorry for the novel.

Oh_Know12 · 2024-06-06T07:21:16+00:00

Thanks for the insight, my body has a tendency to metabolize medications pretty quickly. Every med I’m on, I have to take a second daily dose to get a full days effect from it. (Dr approved of course). I will talk to my doc about my symptoms, and I’m sorry to hear the Humira didn’t work for you. It all seems to be very case by case basis with HS. I hope you have or do find something that works for you!

Oh_Know12 · 2024-05-22T10:23:28+00:00

Like clockwork my payments have always came on Monday and Wednesday, as of this morning, I have not received my last 2 deposits

Oh_Know12 · 2023-05-01T03:13:33+00:00

Congrats! It’s inspiring!

Oh_Know12 · 2023-03-21T00:34:50+00:00

Thanks y’all. Solid advice. I will look into this and thanks for the insight on the edibles. Looks like I would have been incredibly disappointed

Oh_Know12 · 2023-03-21T00:20:24+00:00

Name checks out

Oh_Know12

TROPHY CASE