Announcements
Welcome to the Hidradenitis Suppurativa Support Group!
Hi All, I'm so excited that you've decided to join. I don't really know what I envision for here, but I think it would be really good to have a place where everyone knows what you're going through. Losing weight is extra hard for us because it can cause flares. So anyway, whatever you guys want to talk about, here's the…
Posts
remedies
Hi all, I was so glad to find this group today as I have tried to start a discussion in my PCOS group. I went on vacation a week ago and I noticed that swimming constantly in a salt water pool and the ocean caused me to not have a flare up at all in the location on my inner thigh that has been the problem. It usually comes…
New to the group :)
Hi people, I am an HS sufferer. I've been dealing with HS for almost 10 years now. I am at stage 3 of the disease and it changed and affected my life negatively, big time! I tried everything that was given to me. Been on Accutane twice, did not help. Been on methotrexrate(chemotherapy) and infliximab(remicade) for 8-9…
Humira
Hello. I have been on Humira for 2 months now. I have had HS for 30 years. Nothing has ever helped. I had surgery on both my arms 7 years ago and it was a life saver. I have heard nightmare stories of HS patients and surgery so I was very lucky. The doctor says to give Humira a minimum of 3 months to start showing results.…
What exercise works for you?
So right now, I only have one fully functioning limb! My left arm is sore and I've got a flareup in my groin, and I'm suffering from shin splints from running too much too soon. So I'm wondering if anyone has any easy on the HS but good on the calorie burning exercises that they like to do.
Exercise causes flare ups?!
Does it seem like anyone else gets flareups with more activity? The more I exercise the more, i get flareups! And not to metion im taking the antibotics everyday for almost a month now
Potential New Treatment!
Hey guys, I know someone who knows someone at NORD (the National Organization of Rare Diseases) and they told me this about some promising new drug trials:
remicade
If you haven't talked about this treatment with your doctor you should. It works. I've tried every medicine, diet and even lost 100 pounds. Nothing worked for me. This remicade treatment is helping. After 7 yrs of failed treatment plans this has given me some relief. It has not cured it but has helped. I'll take some…
Does HS interfere with your relationships?
Hi, I'm Gigi! I'm a 25 year old student that's had HS for a while, but I only got a diagnosis this past year when I started getting multiple, large abscesses in my groin. I've had abscesses in my armpit for as long as I can remember, and severe acne, as well as hair loss due to folliculitis. I already had body issues with…
Losing weight while on meds
Hi, I gained lots of weight in the last year or so due to what I believe to be my medications and my poor diet choices in the last year. My HS gone so bad that I was put on 50 mg of Prednisone a day. That is an insane amount, but no less than that would help. That caused lots of things to happened. I gained lots of weight,…
Facebook Support Groups
These are closed groups that you can join - no one other than members can see the pages. These are the ones I belong to, I'm sure there are others I haven't found yet. The HS Diet Connection Hidradenitis Suppurativa Warriors HS Singles Hot Spot Hidradenitis Suppurativa Support Group Daily Struggles: Real Survivors fighting…
