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,...
Hi there!
Semi new to the group. I’ve been watching from a far but I have never actually posted something until now. I am 25 years Old and I have been battling this awful autoimmune disease for about 5 years now. It was manageable up until the last year. Honestly, it’s been the worst year of my life health wise. I started seeing a new Dermatologist 10 months ago who put me back on doxycycline and explains that I was stage 1. I was on and off the doxy for about 7 months with little relief. The only thing that seemed to help was cortisone injections directly into the flare up/sinus tracts. Hurts like a bitch but it does the trick. They would subside for a few weeks giving me some relief. But each new flare seems to get worse each time. Two weeks ago I woke up to 5 different sinus tracts that would not stop bleeding. My Dermatologist injected them again and as of a few days ago—I have little to no pain but have now been bumped to Hurley stage 2 borderline stage 3. Because my flares are progressively getting worse each time, he wants me to start Humira as soon as the new year. Has anyone had relief from Humira? It’s hard for me to decide because right now I am without any pain, lumps, bumps, and sinus tracts for the first time in 5 months. But I also fear that the next flare up is going to be just as bad as the last, if not worse. Thanks for listening ❤️
Humira works as a TNF blocker. You can go to selfhacked.com and look over the information on how to properly level out your immune system. This is how I was able to send my disease into remission. I started taking Serotonin (5-htp). There is especially convincing evidence that the release of TNF-α is inhibited by serotonin and it worked in my case.
Here is a link to block TNF naturally: https://selfhacked.com/blog/supplements-lifestyle-factors-influence-tnf-interleukin-6-il-6/
Here is another useful link to figuring out if you are TH1 or TH2 dominant: https://selfhacked.com/blog/supplements-foods-exercise-right-type-th1-vs-th2-dominance/
My experience has usually been that if research says that something acts as a TNF-blocker in the test tube, I can usually expect it to work on me by reducing my disease symptoms.
My trouble with Humira is that the manufacturer insists that it shouldn't be used if the patient has an infection - we have 20 or 30 years of microbiological research that is about screaming at us about the role of infection in HS.
With that in mind, I really don't know if any of us are actually supposed to be using it, technically.
It may even be unreasonable to expect that any of us have HS without infection. I don't know how Humira even got approved for us without decision makers being ignorant of the microbiological research, but there seems to be a lot ignorance going around, even in some of the highest and most trusted places.
The Mayo Clinic, which is the first place the doctors that I see seem to go for advice, is still trying to tell people that
https://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/symptoms-causes/syc-20352306
"Hidradenitis suppurativa is not caused by an infection and can't be transmitted sexually. It's not contagious and is not due to poor hygiene."
These are NOT things that anybody actually knows about HS, nor are they likely to if they keep ignoring all the microbiological research that's been done on this disease - research that's probably going to go to waste if misinformation has its way.
It's in fact quite remarkable for someone to make such a statement when a great deal of HS literature still refers to antibiotics as a first line of defense against HS, even before surgical options.
This study represents some particularly high-quality and careful research that I am extremely grateful for (four years ago it came to me as a genuine Christmas Miracle).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4257786/
Abstract
Hidradenitis suppurativa (HS) is a skin disease characterized by recurrent nodules or abscesses and chronic suppurating lesions. In the absence of clear pathophysiology, HS is considered to be an inflammatory disease and has no satisfactory medical treatment. Recently, prolonged antimicrobial treatments were shown to improve or resolve HS lesions. We prospectively studied the microbiology of 102 HS lesions sampled from 82 patients using prolonged bacterial cultures and bacterial metagenomics on 6 samples. Staphylococcus lugdunensis was cultured as a unique or predominant isolate from 58% of HS nodules and abscesses, and a polymicrobial anaerobic microflora comprising strict anaerobes, milleri group streptococci, and actinomycetes was found in 24% of abscesses or nodules and in 87% of chronic suppurating lesions. These data show that bacteria known to cause soft tissue and skin infections are associated with HS lesions. Whether these pathogens are the cause of the lesions or are secondary infectious agents, these findings support targeted antimicrobial treatment of HS.
Many of us may have experienced unsuccessful antibiotic therapy in the past because of poor understanding or lack of awareness of this research. Mistaking the unusual species of Staph that's described in this HS literature for MRSA, could lead to failure of antibiotic treatment against this potentially dangerous Staph, and that's one example how doctors' own lack of awareness can complicate or undermine antibiotic therapy.
Fortunately, we have some fine research that microbiologist Robin Patel of the Mayo Clinic participated in, that's helped us to understand this Staph with the jaw-breaking name "Staphylococcus lugdunensis" may be easy to get rid of with most antibiotics, with the possible exception of the ones most commonly used to treat MRSA Staph.
"Unlike other coagulase-negative staphylococci, S. LUGDUNENSIS IS USUALLY SUSCEPTIBLE TO MOST ANTIMICROBIAL AGENTS,"
https://mayoclinic.pure.elsevier.com/en/publications/staphylococcus-lugdunensis-not-the-average-coagulase-negative-sta
It might be of interest that a lot of older literature on HS may have found this Staph in HS patients and reported it as Staph aureus, because it wasn't until in the 80's or 90's that doctors began to recognize that there this other aggressive, yellow pigmented Staph out there. Many doctors may still be unaware that it exists - which again, can lead to the wrong choice of antibiotics.
The same mistake might also contribute to any reputation HS has for being "incurable" that may be undeserved - if a Stage 1 HS infection were the same thing as a Staph lugdunensis infection as some of the highest-quality bacteriological studies may be implying, HS may often be successfully resolved at Stage 1 before it even has a chance to be diagnosed as HS, and could often be entered into medical records as "successful resolution of a non-MRSA Staph aureus" due to misidentification, rather than as the resolution of a Stage 1 HS case.
I believe that the biggest improvement ever made in my own HS was when my doctor probably killed this Staph with something simple like erythromycin. It took a long time for them to clear up, but I believe this got rid of my sinus tracts and a lot of the severity of my condition - hopefully for good, but definitely for all of 10 years now.
I also suspect I might even have been complete cured by now and not just "2/3 cured" if it weren't for probably having some particularly stubborn secondary infections that may require more careful lab work and possible testing to see what will kill them (susceptibility testing), in order to remove from where they don't belong on my person.
They might even be "good bugs" but I'm not sure it's so "good" when they find their way into a HS lesion (or any tissues, for that matter) - they may be causing inflammation (TNF-a blockers / Humira are anti-inflammatories) and the same bugs could also be keeping the lesions from healing, just as they may be candidates for having kept surgeries from healing properly.
(Caregivers attempting to treat HS may also want to be aware of other possible causes of antibiotic failures and recurrence of infection, such as bacterial biofilms. It's very much in doctors' best interest to be knowledgeable on the subject, since a number of studies indicate that the majority of infections that doctors see in clinical practice could involve a biofilm component).
Hey, I would definitely recommend getting on Humira, especially if you feel frustrated with hs and that it has been bothering you for years.
I've been on humira for one year, and while it does not cure hs, it does seem to help my symptoms more often than not. I still go to the dermatologists and get my problem areas shot up, but I do feel like humira has been worthwhile and it has gotten rid of what led me to get on it in the first place (cysts- inner thighs).
It is the ONLY FDA approved drug for hs.
I don't fault anyone who tries Humira. I just believe in exhausting all options before going on a drug where the long-term side effects are unknown. For me. I found a direct connection with my immune system and my disease. It took lots of lifestyle changes, diet, and supplementation. I've read where others have sent their disease into remission with diet alone. Everyone is different so I would never say that my way is the only way or even the best way. I hope that whatever direction you go, you achieve healing and remission from this awful disease!
just posted a new thread explaining y
https://www.dailystrength.org/group/hidradenitis-suppurativa/discussion/no-for-humira
Some of the things that can go wrong with antibiotic therapies are still being researched. Some antibiotic combinations may be able to interfere with each other out in surprising ways, we've already seen some of that in HS research (the clindamycin-rifampicin combination) and there may be more examples.
https://www.ncbi.nlm.nih.gov/pubmed/24445967
So we may be sort of caught in a paradox or "catch-22" where antibiotics still show fantastic promise against HS, BUT they may have to be used VERY carefully, and it may be hard to find a doctor who currently knows enough about the subject to use them as they need to be used for best results.
I think I'm living proof though that great improvements can be made even by getting rid of just one or two of the more important infections in HS.
One thing we may be able to do in the meantime if it turns out Humira isn't for us, is to learn to identify and avoid our HS triggers. Some of us can be sensitive to stress as a HS trigger, for example, and some of us may either already have or later develop sensitivities to various things (often foods, nightshade sensitivities seem to be common although I don't seem to have them myself) that can result in lots of inflammation.
Simply staying away from HS triggers that produce inflammation (when and if its possible) may often be as good as (or even better than) anti-inflammatories. My experience with HS has always been that anything the disease gains from inflammation, it doesn't like to give back easily.
I can have some of my boils or cysts grow ten times their size overnight if I get into the wrong thing (the food additive carrageenan seems to be something I'm very sensitive to, for example) but they almost never go back down in size that quickly, more like a month or six weeks.
"An ounce of prevention is worth a pound of cure" may ring true here?