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,...
I just went to a dermatologist for the first time about HS. She recommended I stay on the two antibiotics I currently on, gave me steroid injections and wants to recheck in a month. If there is no improvement she says we will try Humira. My question is this. Is anyone currently on Humira? Have you seen improvement? Side effects?
I haven't tried Humira myself because the doctors haven't offered and the manufacturer keeps scaring me away from the stuff, and a lot of the scary stuff is about infections. Our best research into HS shows us that people with HS may tend to typically have certain infections and it's still not clear if the makers of Humira realize that.
The first two things on their to-do list:
"Tell your doctor about all of your health conditions, including if you:
Have an infection, are being treated for infection, or have symptoms of an infection
Get a lot of infections or infections that keep coming back..."
https://www.humira.com/hidradenitis-suppurativa
We shouldn't have to tell them this, infection seems to pretty much come with the HS diagnosis. In spite of this, Humira may still help some of us, although that may still beg for a good explanation.
If your derm is interested and has the time she might read the next article as a place to start, this may show a lot of what might be typical for infection in HS patients (Staph, Prevotella, and Strep?)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4257786
https://wwwnc.cdc.gov/eid/article/20/12/14-0064_article
That might even help your derm or doctor to get more good out of antibiotics - many doctors may still not realize that there may be infection present and may think they're using antibiotics for beneficial side effects, so they may not make the best choices for certain infections. (My doctors are still trying to give me doxycycline for "beneficial side-effects" that they think it must have, even after I went through lots of it without getting any good out of it).
I was surprised awhile back that the oral steroids they gave me for breathing trouble seemed to help alot with my HS while I was taking them, also with stomach trouble (I hope I don't have Crohn's but I think it is supposed to be common in HS patients), but they seemed very reluctant to have me on steroids for more than 10 days and there may be some concerns that might discourage long-term use?
Sorry if that's a lot to deal with and you may not want to, but sometimes it's not easy having HS just because it's still easy for others to misunderstand. I may not get through to my doctors often about it, but they usually have some things left to learn about it and they might be a lot more help if they did.
I'll be quiet now and let people who actually have personal experience with Humira tell you about it.
With antibiotics, we often see ratings like MIC or MBC, meaning Minimum Inhibitory Concentration (MIC) or Minimum Bactericidal Concentration (MBC) followed by numbers such as 50 or 90
https://en.wikipedia.org/wiki/Minimum_inhibitory_concentration
https://en.wikipedia.org/wiki/Minimum_bactericidal_concentration
MIC50: The lowest concentration of antibiotic required to inhibit 50% of the organisms
MIC90: The lowest concentration of antibiotic required to inhibit 90% of the organisms
MBC50: The lowest concentration of antibiotic required to kill 50% of the organisms
MBC90: The lowest concentration of antibiotic required to kill 90% of the organisms
One of the things that might explain some of what we are seeing is that as microbes become more insensitive to antibiotics, the doses used that used to have Microbicidal effects and kill the microbes, might begin to have only Inhibitory effects and simply prevent them from multiplying.
A possible outcome is that as long the patient receives an Inhibitory dose, we might see the microbes stop being active, stop multiplying, and stop releasing toxins, until the antibiotics run out and here is the infection trying to rage again because it never went anywhere, it only started to look like it after x number of weeks of Inhibition by antibiotics that weren't strong enough anymore to kill the infection.
If such a thing is really taking place very often, it might look a lot like another possibility, which is simply getting most of the infection out with the antibiotics but leaving a few behind that can go on to start the process all over when the antibiotics aren't there anymore.
Things like this can be confusing and might make it all the more easy for doctors to think that the antibiotics are only having some sort of beneficial side effects against HS rather than having an effect on infection that may be present, whether or not the doctor realizes it's there.
The more they learn, the more they may be able to get lasting results for HS with antibiotics rather than just temporary ones, starting with learning just how often careful studies find infection.
A remarkable thing is that the less common type of Staph associated with HS isn't supposed to nearly as hard to get rid of as MRSA Staph, but a doctor mistaking it for MRSA could result in an antibiotic prescription that may be unlikely to succeed (this may often result in prescription for vancomycin), That kind of thing may not only happen, it may be one of the most common doctor errors reported by HS patients. Many doctors may still not be aware that this less common type of Staph exists, and it's easily confused with the common Staph aureus.
This article describes the effort of Robin Patel from the Mayo Clinic and others in finding out what it takes to get rid of our less common type of Staph, I'm sure it's another article that's very good for our doctors to know about
In Vitro Effects of Antimicrobial Agents on Planktonic and Biofilm Forms of Staphylococcus lugdunensis Clinical Isolates
Kristi L. Frank, Emily J. Reichert, Kerryl E. Piper, and Robin Patel
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1803120
It's a shame the Mayo Clinic has had such (in my opinion) a poor page on HS when they're doing such good work with the less common species of Staph so frequently found in HS patients.