Posted , 4 users are following.
I have the mild case of HS for now, but I have had some bigger ones (maybe 1-2 inches in diameter wide). They are painful, and I just want to help prevent it from escalating. Does Humira help? Or has anyone found anything else that helps?
0 likes, 8 replies
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Debbon cimholt
Posted
sandrarobinson cimholt
Posted
Hi there sorry you are going through this. I have had HS for 14 years. I have started Humira almost 5 months ago, I haven't seen any positive action yet and I have all the bs side effects. Nausea , no sleep, joint pain, weight gain, headaches etc, Now Humira says it will take 7 months to notice a difference first they said 4 months. If this doesn't work my specialist wants me to use Stelera. Dames side effects as Humira just hope something works so tired of living with pain. However I had surgery on two of them and those haven't come back it's been almost 2 years. They were on the bikini line but I have 7 in the buttock area well since 2002. The ones I had surgery on were there also since then too. But I hear paleo is good I also have food allergies. Good luck keep us posted.
cimholt sandrarobinson
Posted
Oh my gosh. I'm so sorry to hear you're going through all of that. I'm also sorry you're dealing with the side effects. That's partially why I'm skeptical about it. Good luck, and I hope you feel better soon!!
sgf82 cimholt
Posted
I've had HS for about 20 years, though for about 15 years it was in remission. I have no idea how or why-- I really wish I did though! Anyway, the HS started in my 20s with plum-sized absesses under my arms. I just sort of dealt with the pain and discomfort, and it went away. Then in my late 30s it returned. I think stress plus doing some sweaty sport activities (martial arts and fencing) triggered it.
A couple of years ago, I went into stage 2 of the disease, which involves the tracts under your skin and open sores that never really heal. Also, mine oozed a type of tissue called granulated tissue along with pus and blood.
I went on long term antibiotics for a while (minocycline). It worked for about a year but then stopped (it was at this point that I developed the tracts). A little over a year ago, I started taking Humira, and it has helped a lot. I still get little bumps under my arms now and then, but they gon't ever get larger than pimple-sized. So no super-painful lumps and none of the fatigue I was experiencing. The commercials for Humira mention a lot of scary side-effects, but so far I've been lucky that in that I haven't gotten any of them. In fact, one of my knee joints was slightly damaged from fencing and would ache when I climbed stairs, and the Humira actually fixed that (it's used for arthritis as well).
The Humira didn't really help with the open sores though. Even though not nearly as much tissue oozes out, the sores would heal, then after a month or so get swollen and then open up again. Yesterday, I had surgery done to clean out the tracts. Hopefully they won't open up again.
I'd say if you try tumeric, zinc, diet, and the other relatively inexpensive recommendations and none of them work, give Humira a try. Skip the antibiotics, they're a short-term solution to a chronic problem, and have as scary side effects as Humira. Hopefully it will work, and if it can help prevent you from getting into the later stages of HS, it will probably be worth it. People react to drugs differently, so there's no way of knowing if it will help unless you try.
Best of luck.
sandrarobinson sgf82
Posted
Hi how long did it take for Humira to work o. You? The HS has triggered me to have Fibromyalgia and the Humira makes it worse but still doing it as I'm in stage 3-4 some have been weeping since 2004 non stop. Always wearing gauze and dull pads cuz of getting dirty. Thanks
sgf82 sandrarobinson
Posted
Hi,
I'm really sorry that you've been suffering from this for so long. I know all about the gauze pads. For some time, I used gauze pads and extra large band-aids for so long the tape would make my skin raw, even after alternating the way I applied them.
For tracts and weeping sores I think the only way you can fix those is through surgery.
At the time I started taking Humira, two of my sores were open and swollen. If I remember right, within two weeks the swelling was gone and they were closing (A few months later they opened up again though). It could have been coincidence that the sores started closing shortly after starting the Humira.
But, one thing that I'm fairly certain about is that the Humira is preventing *new* bumps from becoming the full-on painful HS abscesses. Since I've been on it, the largest I've gotten was maybe 1/4 inch bumps, compared to the 2-4+ inch monsters I used to get. Are you getting new bumps still?
Also, my dermatologist mentioned that the normal Humira dosage now is 1 shot per week. I'm taking it once every 2 weeks, maybe because my case isn't as bad as it could be.
Maybe since you're at a more advanced stage than me, your body will take longer to heal, even with the help of Humira or whatever your doctor is suggesting.
sandrarobinson sgf82
Posted
Yes I take it weekly and I got 2 new ones this week. I have been on Humira well 5 months Monday. But I use to have 15-20 at a time I have had 2 surgeries and those haven't come back almost 2 years ago. But the 7 I have in bum area are 5 almost all together into one huge bump so doctor says has to be more apart less sinuses.
cimholt sgf82
Posted
Thank you so so much! I will definitely give all of that a try. I'm sorry to hear you are going through this too. But I'm glad things are getting better!! Gives me hope.