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,...

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Humira-yes or no

tchristo70
tchristo70
I have lived with HS since I was 14 years old, when it first "cropped up". I am now 43 years old. I am a stage 2 and mine is in the groin area
It wasn't until around 7 years ago that I finally came across a dermatologist who knew what this was. Imagine my surprise and shock to find out this had a name and I was just a freak. Since I was 14 I have been cut, poke, prodded, told I didn't bath properly, etc. etc.
This wonderful doctor put me on minocycline, 100 mg everyday. For the most part it work. Sure I had to go in for injections, draining, surgeries and all that fun stuff we get to put up with.
But I lost my job and could no longer afford to see him.
So every week I would take my bleach baths, 3 times a week. Hot packs to relieve pain and I take Turmeric EVERY day. I cut stress out of my life (almost hard to do with kiddos). I started meditation and yoga and going "commando" as much as possible.
I now have a wonderful job and insurance again. I still follow my routine and I've had success. I got divorced and moved to a quiet slow paced town. I had been doing great until about 3 months ago (only having small outbreaks) when all of the sudden I'm hit with a huge outbreak. I've had to educate my family physician on the whole HS thing, to which she has been wonderful. She asked me to see a Dermatologist that was top notch.
He wants me to try Humira. After reading about it and seeing the cost associated with it, every fiber of my being screamed NO!!! I have a few wonderful friends who know about this and I've talked to them about taking Humira.
I'm not going to lie....I'm scared to even try it. Everything I've read about the trials has me scratching my head and wondering if the outcome would even be worth it. I manage okay and have a set routine that helps.
Am I crazy if I want to tell this doctor no?
deleted_user
deleted_user
Some people on tumblr seem to think it's a miricale drug, others say it helped, but not as much as they had hoped for. I read article by Noah Scheinfeld who claims to have treated many HS patients and he sounds rather skeptical. Ultimately, you have to make the decision, but maybe you could get a 2nd opinion.
Personally, I would not consider this medication unless my condition became absolutely unbearable and I ran out of other options including surgery. Good luck.
stillirize
stillirize
Hey I'm currently on a clinical trial where I receive Humira. I have stage 3 and have had multiple surgeries and I'm only 23! I think Humira helps maintain but not cure it. Fortunately the medication is free due to the trial so I'm not aware of the cost. I can say do not expect overnight results I've been on it for almost a year and the first 6-8 months I may have been on a placebo! But my according to the Dr, my HS was getting better when I first started Humira along with minocycline. I say give it a try if you can afford it long term!
rykscoogan
rykscoogan
Absolutely yes. My daughter has been on Humira for almost two years now (along with methotrexate, which our doc thinks keeps the Humira from plateauing), spirolactone and folic acid supplements. She has had no new lesions in all that time, she doesn't "drip" anymore and her wounds, while not fully healed have closed in on themselves a little bit. Now, I think Humira is not for everyone, but my daughter has experienced NO side effects - NONE. She is otherwise quite healthy. I do not think it is a cure, per se, but boy are we believers. And between our insurance and the "MY Humira" program from Abbott, we only co-pay $5 per three month package. Again, it may not be for everyone but it has ABSOLUTELY, POSITIVELY worked for us. We are big believers.
tchristo70
tchristo70
Well, I received a call from the doctors office that my insurance approved the use of Humira. They (doc office) have been riding my butt about getting my blood work and x-rays done so I can take it. I talked to my family about it and I've been thinking about it since it was brought up but for some reason, my gut reaction is still a firm "no". I don't think I'm at the place to were I feel I need this. A couple of years ago, I would have jumped at the chance but since making major lifestyle changes, it has settled down a bit. Ugh! Still so conflicted! I don't want this doctor to drop me if I don't take the meds.
SisterJoyce
SisterJoyce
I tried Enbrel along with a cocktail of other medications prescribed a dermatologist. I have Stage 4 and it did nothing for me but help the arthritis in my joints. When I went to see a HS Specialist, Dr. Hazen. He took me off it.
deleted_user
deleted_user
My son has this and we've been dealing with this since he was 13, I too was shocked at what this is. He is almost 21, has no social life and very few friends, he doesn't go out or do anything, he feels like a freak, says he's a walking freight train, I wish I could do more for him. He has seen many dr.'s but the dermatologist we'd been seeing locally ran in to another one who was starting a clinical trial I believe using humira, the first 6mo we didn't know if he'd gotten the placebo or the actual drug, after about 2 weeks we determined he had the placebo, when he finally starting getting the actual shots OMG what a difference. It's true it doesn't go away but it sure makes it much better and less outbreaks, not as much odor so in my opinion it does help/work. He still doesnt go outside much since the heat still brings them out. It is a clinical trial so it's free to him so I too don't know the cost but I'm sure it's not cheap. Maybe there's a group that can help pay for the cost. Once the trial is over we don't know what we will do either. I can't afford it I'm sure. I am so thankful that we were picked for this trial. I haven't seen any side affects in my son.
deleted_user
deleted_user
Humira is a biological similar to Remicade. They are Tumor Necrosis Factor (TNF) alpha inhibtors. I have been reading two HS message boards for a couple of weeks and also tumblr. To me it seems to me that most folks said it brought them substantial relief, but some also said that it wasn't the miracle drug they had hoped it would be.
Please keep in mind that this drug interferes with your immune system. Personally, I would only take it if my HS got out of control and nothing else worked. Maybe you can consider also dietary changes to lower the inflammation level in your body. My experience with a low carb Paleo has been favourable so far. It can't hurt. But of course it is not as convenient as just taking a pill, but it may increase the overall quality of your life.