Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Hello,
I'm new to this group but have suffered from HS for three years. It occurs on both my thighs near my groin and also on my buttocks. (not as seriously)
I wash with Pan Oxyl each day and I've been through various antibacterial treatments. Sadly, I've had to move on from the either due to side effects or because the treatment wasn't working.
Now my dermatologist is at a point where she would like to prescribe Humira, but wont prescribe it yet because of the cost without justification of having tried everything else first. Before she prescibes that she wants me to try something called Absorica (Commercial Name) Isotretinoin (Generic Name). This drug specifically is supposed to help with various forms of nodular acne or boils that tunnel inward. he problem is the vast amounts of side effects. What's worse is I already have a lot of other maladies that would be much worsened if I take this treatment. For instance, I have glaucoma, am bi-polar, have PTSD, suffer from depression, have multiple spinal fusions, Just got over a stroke, and have a heart condition called tachycardia. I have also been getting tested for the joint and muscular pain I've been suffering in greater amounts over the past year. Most of the team of various doctors I've seen are leaning towards Fibromyalgia. I see the rhumetologist on October 27th, 2015. The side effects are as follows:
http://www.drugs.com/sfx/absorica-side-effects.html
If I even get a few of these side effects, let alone one, I'm afraid I'll be in really bad shape. Most of these side effects are irreversible.
Has anyone else had this treatment? If so, what was your experience? Also, do you think I'm going overboard regarding the worry I have of the side effects?
I'm new to this group but have suffered from HS for three years. It occurs on both my thighs near my groin and also on my buttocks. (not as seriously)
I wash with Pan Oxyl each day and I've been through various antibacterial treatments. Sadly, I've had to move on from the either due to side effects or because the treatment wasn't working.
Now my dermatologist is at a point where she would like to prescribe Humira, but wont prescribe it yet because of the cost without justification of having tried everything else first. Before she prescibes that she wants me to try something called Absorica (Commercial Name) Isotretinoin (Generic Name). This drug specifically is supposed to help with various forms of nodular acne or boils that tunnel inward. he problem is the vast amounts of side effects. What's worse is I already have a lot of other maladies that would be much worsened if I take this treatment. For instance, I have glaucoma, am bi-polar, have PTSD, suffer from depression, have multiple spinal fusions, Just got over a stroke, and have a heart condition called tachycardia. I have also been getting tested for the joint and muscular pain I've been suffering in greater amounts over the past year. Most of the team of various doctors I've seen are leaning towards Fibromyalgia. I see the rhumetologist on October 27th, 2015. The side effects are as follows:
http://www.drugs.com/sfx/absorica-side-effects.html
If I even get a few of these side effects, let alone one, I'm afraid I'll be in really bad shape. Most of these side effects are irreversible.
Has anyone else had this treatment? If so, what was your experience? Also, do you think I'm going overboard regarding the worry I have of the side effects?
Welcome and so sorry to hear of all your troubles. First off do you know what your HS trigger is? Have you tried an elimination diet or tried not to over stress/heat your body and sweat? If not that would be the first thing i would try to pinpoint if possible.
Next, I am not a dr by any means, but if a med could cause Guillon-Barre (SP?) amongst other things ....I would be hesitant. (One person I know is wheel chair bound from it and my s-in-law almost died.)That list was pretty scary. I do not know Humira's side effects but if you are on disability I would think it would be taken care of or possibly you can write the company???
As for joint pain, I have it horribly now and I noticed a lot of others with HS have it also. Type in joint pain in the search bar for the topic if you like. I find it interesting.
Well, please keep us updated on what you decide to do and I wish you the best with all you are going through! Stay strong but know we are here if you ever need us :)
Actually, a few minutes ago I read that this med used to be called Accutane. I don't know why the name was changed; perhaps because of the people who associate it with all the horrible side effects.
I will likely try an elimination diet. Do you (or anyone else) have any suggestion on what type?