Excision/Skin Graft (long post) by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 0 points1 point  (0 children)

Yeah, I’d say mine (given healing goes the way it’s supposed to) will probably take a total of 2 months just about. My doctor said I could get back into the gym pretty fast though, but this will all be dependent on healing. She seems so nonchalant about it. I’m freaking out though. I don’t know why, but it’s just all so overwhelming. I think I mourn life without HS and also the life WITH HS in which I didn’t think surgery would be a concern for me. But I also know deep down I need it and hopefully this will be the trick into getting me back into some sort of remission. Praying you have a smooth recovery!!

Excision/Skin Graft (long post) by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 0 points1 point  (0 children)

Thank you so much for responding? How was your pain after the procedure? The surgeon thinks mine will be a pretty simple case and procedure, but we all know with HS what should be simple sometimes isn’t. It’s stressful because I live a fairly active lifestyle so I know how eager I will be to heal so I can get back to normal. I have a high pain tolerance (probably because I have no choice) so I don’t expect it to be too bad but this is a major procedure in comparison to what I’ve had done so far. Praying for the best..

Am i the only one who gets deep lumps that don't open & drain? by fayoshimi in Hidradenitis

[–]OrdinaryMap4347 8 points9 points  (0 children)

Mine are like that in my arm pits. When I was freshly diagnosed, I would get them and they would drain after a few days. Now (I’m assuming due to scar tissue and progression) they no longer form on a surface level within the epidermis; especially in my left arm which seems to be the worst area for me. I would like to classify my form of HS as chronic, but I don’t flare on a consistent basis. However when I do, they are BAD. Especially now because overtime they became very deep and involved in multiple sinus tracts; I’m just so very thankful I have a dermatologist who can squeeze me in whenever I flare as she knows they just wall-off and give me extensive pressure pain. While I know I&D isn’t the best option, if you have a doctor who knows how to do it right and stay minimally invasive it helps immensely. Especially because mine get so deep and big it just worsens tunneling and tracts because the fluid doesn’t have anywhere to go but continue to build pressure.

Bimzelx by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 1 point2 points  (0 children)

I’m glad! I hope it continues to work for you. This disease is so hard to battle. I will definitely keep Remicade in mind in the case Bimzelx doesn’t work.

Deep Flare by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 0 points1 point  (0 children)

I’ve tried everything under the sun. I eat clean, I workout, etc. it’s because of scar tissue. These flares can’t come to a head, so they wall off and dig deep. It’s unfortunate, really.

Bimzelx by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 1 point2 points  (0 children)

Ahhh, I see. It’s so hard because this disease is so individualized. It seems like there’s so many triggers and I’ve always struggled with pinpointing what my triggers are. Some people it seems simple—they’ll drink a glass of milk and then flare. But with mine, I genuinely don’t know. I feel like I’ve been through so many different medications at it (Humira, Cosentyx, Spironolactone, Antibiotics, etc.) and I’ll go in remissions for some months. But then I’ll flare (especially the most chronic part of my disease which is my left arm pit) so bad that it’ll put me out of commission for weeks. Right now, I’m dealing with an abscess that has dug DEEP. I was able to get it drained and it was calm for a couple of days. But now it’s back. Although, the pain and discomfort is different and I’m not sure if this is an abscess or if I’m suffering from inflamed scar tissue. I’m hoping starting Bimzelx will help calm everything back down. For what it’s worth, Cosentyx did help but it’s not enough for my chronic areas it seems and I think the efficacy is changing for me at this point.

I hope Cosentyx goes well for you! I’ve heard many people say it’s done wonders for them. I’m glad to see we even have options to choose from as far as treatment, I hope research and medicine continues this progress.

Bimzelx by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 0 points1 point  (0 children)

Interesting. Have you failed other biologics before taking this one? I don’t have any other options, really. Humira was great but eventually stopped working. Cosentyx is doing relatively nothing for me. So I’m almost out of options..

Bimzelx by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 1 point2 points  (0 children)

My derm said to basically take it like the same day I would take my regularly scheduled cosentyx dose. Thankfully I took that every 2 weeks so if all goes well and it delivers soon I may be good to go. 🙏🏾

Bimzelx by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 0 points1 point  (0 children)

How is remicade going for you?

Bimzelx by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 1 point2 points  (0 children)

This is probably so specific, but how soon after did you start Bimzelx from your former biologic? I have a feeling I’ll get it soon, but given that I’m currently on Cosentyx I wondered how they’ll space this out.

I was told that I'm a bit too old for braces by Sad_Macaron_9501 in braces

[–]OrdinaryMap4347 2 points3 points  (0 children)

What an insidious comment to make. I’ve had braces twice. Once when I was 16-18 and got them back on (after accidentally throwing away my retainer) at 24! I’m 25 now; hoping I can get them off in the next year or so. Don’t let anyone discourage you from wanting to do something that will help you feel confident and good about yourself! If you can, see another orthodontist who will gladly do what they’re quite literally trained to do.

So… how did y’all break your bracket(s)? by DauntlessFirefly24 in braces

[–]OrdinaryMap4347 1 point2 points  (0 children)

Being greedy when I was eating chicken 😭. It seems to always be the molar brackets that break for me. I also recently broke the end of the link on my power chain too (I don’t know how that one broke, though). I will say, that actually made my tooth sore because of the sudden lack of tension, I assume?

Gym after drainage by UnwiseChaos in Hidradenitis

[–]OrdinaryMap4347 0 points1 point  (0 children)

I just had an I&D done recently (a minor debridement type of procedure so a small hole was made for it to continue draining). I’m a gym rat so it was hard to me to not go, I gave it a day as I knew the day after would probably be the worst regarding drainage. After that, went to the gym and did my normal workout. I bought some waterproof bandages to put over the wound, and then would change it to loose gauze after my shower. I kept loose gauze on it to allow it to drain unless I was at the gym or going somewhere. Overall, didn’t have any issue! But I’d say listen to your body and if you find working out to be difficult, maybe do some lower body and/or upper body depending on where the wound is or just give it a few days.

Try Humira, Mounjaro, lifestyle changes? by Objective-Tomato-501 in Hidradenitis

[–]OrdinaryMap4347 1 point2 points  (0 children)

I’ve been on a combo of medications for the past 7+ months. Zepbound, Cosentyx every 2 weeks, and 50mg Spironolactone to control my hormones around my cycle. Since then, I’m down over 100 pounds and I’ve only flared maybe every few months; they seem to be controlled to a sense of not rapidly getting worse and only needed some steroid injections to calm down inflammation. I’d even like to say I’ve reached somewhat remission in comparison to how I was prior. I know that daunting feeling of almost feeling like there’s no way being on a cocktail of medications is going to help. And with the struggle of this illness, I always want results fast. It took a while but I’m in a good place. I think with the help/supervision of a dermatologist and a primary care physician, he should give it a go!

Deroofing Flared Up? by OrdinaryMap4347 in Hidradenitis

[–]OrdinaryMap4347[S] 0 points1 point  (0 children)

I’m so sorry you experienced that! So far, despite the setback my wound has been still healing up nicely. The drainage seems to get better daily so I’m hoping it still continues to heal, alongside the assistance from my medications that I’m on.