Hidradenitis Suppurativa Support Group

Just wanted to let everyone know that I haven't had any flare-ups since the hospital stay at the end of January...(knocking on wood)! It could be because of the powerful antibiotic therapy I've been on...besides the IV antibiotics I was on in the hospital, I've done a round of clindamyacin and followed that up with now, a three-month round of Bactrim. I also use tea tree oil (diluted), aloe vera with lidocaine, and hand sanitizer.

I've been reading in our group that some doctors think HS is related to un-cleanliness and that really bothers me. I have always been a clean person, and for some reason that just bothered me!

Just trying to prepare for the warmer weather now and trying to enjoy the flare-up-free time that I have right now!

Great news berryjen, I'm very happy for you! How are you doing on the Bactrim? Any issues?

That is fantastic news Jen! I pray that your lucky streak will continue. I know that Bactrim KILLS my stomach, but it was the best thing for when my HS turned into cellulitis on my bum.

I also cannot understand why doctors would ever relate HS to being "unclean." That was what the first 15 doctors that I saw, told me as well. That I needed to bathe "better?" Use a mircobial clenser. Use baby powder to stay dry, etc etc. None of that ever worked- because HS has nothing to do with out cleanliness! I think some physicians want to automatically lump HS into a category with acne & boils- which can be caused by extra oils on the skin, clogging the pores. Ugh.

Anyway- keep up the great & flare-free work! <3 Candace

It's interesting to me how some have luck with antibiotics and some don't. I know that they work well for me (specifically Bactrim when I get an area that abscesses). I have recently started back on the daily doxycycline, 50 mg at bedtime. So far all it has done is make me wake up feeling pukey but hopefully that will settle down in a few days.

I guess maybe the fact that the antibiodics work for some leads some doctors to believe that it is a "cleanliness" issue in that the antibiodics kill bacteria. Even though this is bacteria that is normal for our bodies that has gotten into the skin instead of staying on the surface. (Staph is found on 25-30% of healthy adults) I know not everyone has tested positive for staph infection when they have had cultures done so I would concluded that the bacteria certainly isn't a cause, just an exacerbating factor to some of us. Any thoughts?

Doxycycline (hope I spelled that correctly), doesn't do anything for me However, the Bactrim seems to be working! I take it with a large glass of water to avoid a stomach ache.. I was almost talked into trying Accutane, but thanks to this site, I declined.

Melski, I'm not totally sure about the bacteria-cause theory...still too new to this diagnosis...

Mel, We all sometimes question the reasoning behind most doctor's prescribing antibotics. HS is not an infection in itself, therefore the antibotics work best for when a secondary infection is present. It's my personal experience that when doctor's see the "pus" in a lesion, they automatically assume there is an infection because "pus" is a thick fluid produced by the body as it fights infection. However, HS is not your typical disease, so there are so many things about it that make it difficult to understand. My weirdest concern is the low-grade fever that most of us agree to having & not only during a flare-up. What is up with that? A fever usually occurs in response to an infection or inflammation, but then why do I have a fever, even when I am not flaring up?

It boggles my mind! <3 Candace

About fever, I'm not sure if anyone knows why, but I am sure that we have inflammation in our systems when we have HS, as well as when we have untreated arthritis and other auto-immune problems.

If you are like me and can't take anti-imflammatories, there may be a constant low-grade fever going on. It is hard to say whether it is from HS or some other problem< but there is always inflammation in my blood when tested. I was sent to a rheumatologist for that reason, and he dx'd me with Fibromyalgia at that time. I can feel HS being effected by the fibro flared, and vice versa.

I seem to be babbling now so will stop typing and just say, Have a great day and hope your HS takes a hike today. well, better not start with hiking. lol

Hugs, Karen

And then there is the age-old question....Which came first? The chicken or the egg? LOL Just what we need, an old analagy to live by.

At the mention of fever I just thought I would post something that was told to me not to long ago. 98.6 is AVERAGE in people, but individual can run higher or lower. For example my normal body temp runs about 97.5 (which is actually lower than the .9 degree variation for human body temp) LOL. So I have to tell my doctors if I come in with a 100 degree fever that it is more like a 101.1 The thing is I rarely run a fever unless it is a serious illness. (other than a slight elevation during ovulation.) Even when I have a bad flare or area that has abscessed (and tests positive for MRSA) still no fever! Just another point that our bodies are all different to illustrate why treatments have differing effects on individuals