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Good Evening Guys!
I can tell you my story but I'm pretty sure you all already know it. I'm sure there are some differences, but we're all pretty much in the same boat. HS ( I refer to it as my Horrible S#%&!) is just that: extremely painful, debilitating, & mutilating.
Cutting out nightshades, creams, antibiotics, tea tree oil, different deodorant, turmeric, zinc, Accutane, Vitamin D, blah, blah, blah... all help but absolutely none of any combination of any of it really prevented or curtailed breakouts for me for any length of time. I've been to all kinds of Drs. I had one dermatologist tell me "it will burn itself out." Oh, my head spun around! I'm pretty sure I spit green peas! I don't understand why more Dr's aren't educating themselves. It's such an embarrassing disease to begin with & then to have Dr's belittle, discount, & or disparage a patient absolutely does NOT work for me. It was in that moment I came to a realization. I was going to find someone who would actually help me.
So... I set out on a mission. If there wasn't a cure, I was hell bent on the closest thing to one I could find. I've spent many long hours researching on my own & was more than willing to be a Guinea Pig to any doctor willing to actually try.
Needless to say, I found one.
Here's my experience as short & sweet as possible. If anyone has questions, please don't hesitate! I am more than happy to share & truly hope it helps & or encourages everyone of you guys!
Nobody knows for certain was causes HS. "They" do say it's an Autoimmune disease. I, personally think in my case, there's other factors in combination, like hormones.
The dermatologist I found did the trials & studies for FDA approval of Humira for HS.
Humira was not approved when I started.
I completely spun after reading the ridiculous possible side effects. But in the end, decided the quality of life with HS wasn't any worse than any of the side effects listed.
Within 2 weeks I noticed a huge difference! No breakouts.
Within a month I really started testing the boundaries & put on a pair of jeans. Wore them an entire 12 hours. No breakouts!
Ate potatoes. A lot! Within 2 days, I could feel one coming on. Took a shot. It went away!
On & on.
I have now been on Humira for a little over a year & I have gone from golf ball size tunneling sonsabeetches, wanted to die if I moved, at least every 3 to 4 week breakouts to 2 tiny never fully surfaced breakouts in the past 14 months.
HUMIRA is the closest thing to a "cure" that I've found & the best part is, I have my life back!
I do still try to watch the nightshades, but I eat them pretty regularly honestly like 6-7 times a week. I don't wear underwire. (I haven't tried) Probably should. I also have not gone back to stick or roll deodorant. I use Secret spray. It works for me & it's not an inconvenience, so haven't bothered.
I take a Humira shot once every 2-3 weeks, but will take one if I feel the least bit leary of lesion coming on.
Humira has now be approved by the FDA for once a week treatment for HS, if needed.
To be completely honest, there are 2 negatives to taking Humira. The shot is 10 seconds of pure fire. The needle is tiny, it's the actual meds that sting & sometimes I get tired the next day after taking. Both of which I choose, no doubt over NOT taking Hurmira! I encourage you all to find a Dr who is concerned & serious about treating & preventing HS. Nobody should have to endure this Horrible S*#%!
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