Have Hidradenitis Suppurativa? You might find this interesting-Propecia

ABumpyGal · 12-06-2005, 04:42 PM

All the more evidence linking HS to PCOS, in my mind. You can find this article at: http://tinyurl.com/7bawp
(I hope that works, it's the first time I've used tinyurl's service, but the url was huge!)

I would copy and paste the whole abstract, but I can't figure out how to cut and paste here. Sorry! Basically it talks about how people with HS are particularly sensitive to the enzyme 5a reductase, which converts testosterone to dihydrotestosterone (DHT). You could then see with our high testosterone levels how we could be at a higher risk for this disease. Seven patients with HS were treated with finasteride and six patients improved "significantly" and three had "complete healing of lesions"!

I'd love to get my hands on some of this finasteride stuff (otherwise known as Propecia or Proscar), but every doctor I've shown this study to has said there isn't a chance in hell of getting a doctor in the US to prescribe it to me as I am a reproductive age female

It can cause penile birth defects in male fetuses you see. I don't plan on having children, am on BCP and use a backup, and would be willing to sign anything they'd put in front of me to try this drug! Heck, I'd be willing to get a tubal or even a hysterectomy! They gave me Accutane twice for goodness sakes and it causes horrid birth defects for all fetuses. Plus that was just for cystic acne... HS is literally crippling for me. A bit different! It just burns me up!

I know I've seen in other's sig lines that they take finasteride, but I haven't seen anyone in the US yet. Has anyone out there in the US managed to get it? I've even had less than ethical or legal thoughts about Mexican pharmacies, but I probably couldn't afford that anyway. I'm just desperate here! This is the closest thing to a cure out there for a disease that has taken away my life and it's denied me due to my gender and our litigious culture

But oh if I was a man going a little bald on top... well, that would be a whole different story! Grrrrr.....

Sorry I'm a bit cranky, but I have one the size of a grapefruit on my lower abdomen. It's actually made up of three bumps all coelesced together and it's hurting like a b***h and I'm lucky enough to have pain medication!

All of us out there with this disease shouldn't suffer this way in 2005.

StarMaiden · 12-06-2005, 06:34 PM

I do hope you are bringing that article to your Doctor's attention!!!! You are suffering, clearly, and you deserve a trial on this drug. With the evidence of the study, and your commitment to avoid conceiving, your doctor ought to give you a chance.....I do feel for you!

isenephthys · 12-06-2005, 07:11 PM

bumpy, *hugs* i totally agree with you! it is a bloody shame that in this day and age when medications are available to alleviate suffering that doctors will not prescribe them because of gender inequality. ooh, i could go off on that one for hours!

i don't know anyone in the u.s. on propecia or proscar. i would keep searching for doctors... and you seem responsible and edcuated enough to understand the risks and take proper precautions to avoid them... do you have an endocrinologist? i think they might be more open to prescribing more "daring" medications that an internist.

Eva37 · 12-06-2005, 07:38 PM

Hi

yes, I know how much hs is horrible. Dont know why drs wont give us the meds to help..........
Eva