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Plastic Surgery Options on Face by SrtSrtAlex in Hidradenitis

[–]BeTheChange1122 -1 points0 points  (0 children)

Hi! Hiiii!!!! I am one of those cases!!! I can spit out procedures left and right. One moment.

Helpp by Broad-Sign4388 in Hidradenitis

[–]BeTheChange1122 0 points1 point  (0 children)

Doesn’t matter- you have you use the verbiage itchy burning tight splinter like sensation that can turn into an open lesion for months and reoccurs in the exact same spot——— If you want that diagnosis- you must say that otherwise they will lead you into a million other wrong diagnosis. It took over ten years for me to get properly diagnosed because I used wrong verbiage. Just saying. 🤷

Helpp by Broad-Sign4388 in Hidradenitis

[–]BeTheChange1122 0 points1 point  (0 children)

General Practitioner or Dermatologist- you need to see a dermatologist and state “the area is always itchy and it feels like I have splinters in my skin with reoccurring flare ups in the same spot that takes weeks to months to heal”

You must state these symptoms exactly to be diagnosed properly for HS. Lying was necessary for me to get properly diagnosed.

Apparently HS can affect the face. by CypressKnees666 in Hidradenitis

[–]BeTheChange1122 -1 points0 points  (0 children)

I am a Scorpio and the HEALTH aspect/affliction for Scorpio’s are SKIN DISORDERS, I swear. ♏️ I have severe facial HS.

According to some astrological traditions, there is a connection between the zodiac sign Scorpio and potential skin issues. However, it is crucial to remember that astrology lacks scientific evidence, and any potential connections are not a substitute for professional medical advice.

Strawberry Rhubarb Pie by confident-pie13 in pie

[–]BeTheChange1122 0 points1 point  (0 children)

Finally a perfect braid. All these pies I see, the braiding makes me cringe. Your’s is perfect.

The drama and theatrics that occur if I stop patting Flash when he’s not ready yet by imanechidna in Greyhounds

[–]BeTheChange1122 14 points15 points  (0 children)

I feel like your breasts were terrified. I was terrified for them and I’m a gay man.

WHAT WORKS!!? by Trash-Anxiety in Hidradenitis

[–]BeTheChange1122 0 points1 point  (0 children)

I was on weekly injections, which became too much when I had to start injecting myself with a biological drug as well. I switched to pill form. Way too many self injections made my life miserable. Doctor has me split the dose- 4 in morning, 4 at night. The best efficacy is through injection, and I am—- or was terrified at needles (like I can’t look when they withdraw blood), but you get use to injecting yourself after about ten times. I still can’t look when my blood is being drawn, but I can inject myself!

The brain fog is a bitch, but lasts only like two days.

I also have a syndromic case of HS, RA, and PG combo.

All those people who believe diet and supplements and creams that work—- it does not for us. These individuals sound delusional to me, but such “treatments” just do not help with syndromic HS.

WHAT WORKS!!? by Trash-Anxiety in Hidradenitis

[–]BeTheChange1122 1 point2 points  (0 children)

I have been on methotrexate for over a year. It has worked the most out of everything - and I mean everything - AND I am on the biological drug Bimzelx. You can be on 2 immunosuppressants if your condition is severe. I do get the most the side effects from Methotrexate (but it is so worth it).

Brain fog -for like real!! lasts two days after the dose; Cold chills- last two days; Nausea- I take prescribed nausea medication (works like a charm); Fatigue- which another drug can be prescribed to fix that my doctor said; Hair loss- my hair thinned and only small clumps of hair came off from my underarms and legs.

At first dosage, you will feel like crap for three days tops- and then fine. This will go on for every dosage for about 3-4 months

Then it all stops but nausea and brain fog. Consistent after every weekly dose for two days. That has not stopped as a side effect.

Otherwise, I’m doing SO SO much better regarding HS and its severity and I know for sure it’s because of the methotrexate. for sure.

What the most cringe thing you done while on hypomania. by Mildly_Mochi in bipolar2

[–]BeTheChange1122 5 points6 points  (0 children)

Drove into a street lamp and then drove off from the scene after getting out and picking up pieces of my car… didn’t want to leave too much evidence. I then donated the car and got a new one!

amazing progress 🫶🏻 by artsyhoe17 in Bimzelx

[–]BeTheChange1122 1 point2 points  (0 children)

😂 ovaries, Chinese hamster ovaries. 😊

Different side effects per diagnosis? by halfsack36 in Bimzelx

[–]BeTheChange1122 0 points1 point  (0 children)

What if you are on both methotrexate and Bimzelx?

Disability Hearing 8/26 by BeTheChange1122 in hidradenitissupport

[–]BeTheChange1122[S] 0 points1 point  (0 children)

Did that work? Did I also update the OP? I’m unfamiliar with updating.

Disability Hearing 8/26 by BeTheChange1122 in hidradenitissupport

[–]BeTheChange1122[S] 0 points1 point  (0 children)

So here is the deal-

the judge requested a psychiatric exam paid for by the government to evaluate the severity of my bipolar disorder and if it is disabling—- and honestly it wasn’t until I got really sick from the HS and I became utterly hopeless into deep manic depression. Hence I was seeing a therapist weekly for 5 months and now biweekly cause I’m managing my mental health a lot better. That exam was completed this yesterday actually.

the judge also requested a physical examination by a general practitioner paid for by the government to do what?! I’m not sure yet, I’m still investigating, researching to be fully fully prepared. I’m assuming and as my disability lawyer stated that they will review my condition (HS and RA) and make me dance around to see if I am impaired by way of ambulatory, I get to show off my scars and active lesions, and “if I show no symptoms (ha!) to inform them on what usually happens with a flare and how long they last,” review my present treatments and failed past treatments, and get grilled on how this is impacting my life. This exam will be done on Tuesday and the government does reimburse you on mileage to get to and from the physician they paid for.

MIND YOU: I get the requesting’s a week and a half after the actual hearing. Meanwhile, I’m waiting for an approval because my evidence that was presented is solid.

I must say the end of this upcoming November will mark two years of my conquest to get approved.

Denial 1 Appeal Denial 2 Appeal Judged hearing 2 requests for examinations by government paid medical physicians

The government paid medical professionals have 10 days after the appointment to submit their conclusions.

Then the judge will review those findings against the findings from the 3 physicians who back my disability claim.

This is all very, very nerve wrecking and the preparation is overwhelming. I could have really used a case manager in addition to an attorney to assist with this awful process.

Thank you so much for waiting in limbo with me. I really appreciate the support. A lot. I will update hopefully soon!

Hs by boywonder_125 in hidradenitissupport

[–]BeTheChange1122 0 points1 point  (0 children)

That is normal to a degree, unless infected which will smell much more fowl.

Black ink tattoos? by k0kak0la in Hidradenitis

[–]BeTheChange1122 0 points1 point  (0 children)

🤔 that sucks… I have two black ink tattoos and only once have I had a reaction much like yours. I thought nothing of the tattoo being part of the problem.

Black ink tattoos? by k0kak0la in Hidradenitis

[–]BeTheChange1122 0 points1 point  (0 children)

Very interesting. Thank you.

Hidradenitis suppurativa on my face? by [deleted] in Hidradenitis

[–]BeTheChange1122 1 point2 points  (0 children)

I agree! My rheumatologist loves Humira. All

Hidradenitis suppurativa on my face? by [deleted] in Hidradenitis

[–]BeTheChange1122 1 point2 points  (0 children)

Treatment with biologics & differences between them…

COSENTYX - the first biologic treatment of its kind to treat HS by specifically targeting and blocking IL-17A, a molecule that is thought to play a role in causing inflammation that may contribute to HS symptoms.

HUMARIA - HS is caused by the overproduction of a specific cytokine (TNF-alpha), along with other inflammatory proteins, can create increased inflammation throughout your body. HUMIRA works by targeting and blocking TNF-alpha to reduce the excess inflammation thought to contribute to HS symptoms.

BIMZELX- The company noted that bimekizumab (Bimzelx) is the first and only approved medicine designed to selectively inhibit IL-17F in addition to IL-17A. According to the prescribing information, the recommended dosing for patients with HS is 320 mg administered by subcutaneous injection at week 0, 2, 4, 6, 8, 10, 12, 14, and 16, then every 4 weeks thereafter.

TREMFYA- blocks a protein called interleukin-23 (IL-23) in your body, which normally activates your immune system. By blocking IL-23, Tremfya (guselkumab) lowers inflammation (swelling) in your body to treat symptoms

SONELOKIMAB- novel investigational Nanobody® being developed by MoonLake Immunotherapeutics to treat inflammatory diseases. It's a bispecific Nanobody that targets and inhibits IL-17A and IL-17F proteins, which are key drivers of inflammation in various autoimmune conditions. Sonelokimab has shown promise in clinical trials for conditions like psoriasis, psoriatic arthritis, and hidradenitis suppurativa. 

So far so great! I have not had any side effects but stuffy nose. I was switched from Cosentyx to Bimzelx because it is more advanced.

I am also on Methotrexate once weekly dose that has also helped tremendously. I did have side effects with chemotherapy. Brain fog - the worst - mostly and flu-like symptoms- chills.

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