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,...
Hello everyone,
I am a HS victim and have had issues for the last 12-14 years. I was recently sent to a dermatologist as my PCP felt bad cutting me open constantly. I have been on multiple perscription cocktails and have been on DOXYCYCLINE for the last year daily.... the dermatologist also started me on HUMIRIA now the humiria helped with the lesions under my arm but has not helped with any of the other lesions. Also the humiria is a scary drug and the side effects are killing me or at least thats how i feel. I tried to loose weight but with working out comes friction and sweat and BOOM i get another outbreak.... I have so many scars on my body its disturbing. I had a doctor contact me regarding the HS and she gave me some advice, wonder if anyone has tried these things or if anyone has any idea on what i should be avoiding food and or product wise.... so doctor said to . take a bleach bath 2x a week(at the least) and moisturize with cerave(?) .... also said to to take lactobacillus 3 in the am and 3 in the pm? also use ichthammol ointment on sores overnight. i should also use apple cider vinegar before using the moisturizer, and she also mentioned emuaidmax?
has anyone tried any of these? does anyone have any advice.... i honestly am so tired of this, the pain, the embarrasement etc.... i legit went to the doc on an emergency visit yesterday and puked all over her exam room from the pain and they just stabbed 2 of the lesions with a steroid and sent me on my way with instructions to take 800mg IBPROFEN. I dont feel good about taking all this medication, i def dont like how the humiria is making me feel.
Get off HUMIRIA and try "Kenirit" it has little to no side effects - it's inject-able - I give myself a shot everyday
I’m located in NH
It sounds a bit like your doctor and your dermatologist perhaps don't know as much as they could about HS and are just going with the information that's typically the handiest, which may not be the best thing to do with something that is poorly understood to begin with.
I was on doxycycline a long time and it did so little that no one is sure it ever did anything, and it was given to me according to the premise that my lesions were sterile and that it was beneficial because it had some kind of beneficial side-effects unrelated to infection, which is absolutely contrary to bacteriological research into HS. I got handed the very same line about my pilonidal cyst problems for decades, "it's not infection", while the bacteriological studies say otherwise. When they start thinking like that, that "it's not infection" they don't often pick a different antibiotic when the first one fails. Why should they if "it's not infection"?
The same goes with Humira, there's plenty of confusion possible there. The manufacturer continues to advise "Don't start Humira if you have an infection" - well what do they think we have? The higher quality the study, the more of us test positive for infections. I've stated getting targeted banner ads for Humira when I surf and there are even more reasons for me to think twice about Humira scrolling across my screen (now they're making a tuberculosis test sound almost mandatory before starting it).. One reason I'm still not tempted is because it sounds like the stuff stays in your system a good while, which sounds like bad news if someone had an adverse reaction to it.
Is this really a drug that doctors should be giving people if they aren't even aware that there is infection present?
Being HS is still a terribly misunderstood and still often stigmatized disease, it can be hard to get good information even from trusted sources like the Mayo Clinic. Typically what happens is that every doctor who has looked at my rear says, "Yup, you DEFINITELY have infection" then they go over to the Mayo Clinic site and look it up, and come back telling me I don't have an infection and that the doxycycline is acting like an anti-inflammatory or an immunosuppressive.
One of the authors of THE finest bacteriological studies we've ever seen of HS (Aude Nassif, an affiliate of the Pasteur Institute in Paris) has pointed out repeatedly that so many antibiotics seem to have beneficial effects in many HS cases, at least temporarily, that they can't all be having such "beneficial side effects".
There are some more good studies out there and often involving the same people, but this is generally a very good place to start
Bacterial Pathogens Associated with Hidradenitis Suppurativa, France
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4257786
https://wwwnc.cdc.gov/eid/article/20/12/14-0064_article
(There should be a lot more links and info in some of my older posts).
The situation really isn't acceptable, especially if doctors are going to allow themselves to be lulled into a false sense of security about the presence of infection, when the bacteriological studies very consistently find worrisome infections like Staph and Strep. It's a shame, because we seem to typically have an unusual type of Staph that is very similar to Staph aureus/MRSA but with important differences, and the Mayo Clinic not only has an excellent page (or at least, they did) on our "Staphylococcus lugdunensis" but they have some fine people in residence that have done ground-breaking work in how to get rid of it - but yet their page on HS is outdated and error-ridden as of only several months ago and has been since I got my diagnosis about ten years ago, several years after it started.
I don't know what to tell you do about your HS, unfortunately. We can all be different in the way we respond to things, and this might sometimes be because we have different infections, only at Stage 1 might HS be just a single infection and it may be possible to have mixed infections that give mixed responses. Some of us have benefited by removing things from our diets like nightshades (tomatoes, potatoes, eggplant) that other HS patients don't have trouble with.
A number of things that are often recommended like Tea Tree Oil, might cause me a terrible flare-up. A number of supplements that used to help now make things worse as if I'd become allergic to them or something. Things like this can make HS a difficult thing to give each other advice on sometimes.
If there's any general rule of thumb, I'd say it would be to experiment carefully, try putting just a speck or a dab of something on and see how you or your HS react before putting on a ton of it.
Maybe the best thing would be if your doctor or derm might read up on HS just a little more, what they learn might help them to be a little more "savvy" about a lot of things involving infections. In some ways, HS might be sort of a model disease for learning more about unusual kinds of Staph and about mixed infections (including mixed aerobic/anaerobic infections, biofilms, and etc, which are all things that it may be important for doctors to have the best understanding of that they possibly can, for the benefit of any and all of their patients).
In fact, the National Institute of Health already projects that the majority (at least 2/3) of ALL infections seen in clinical settings like doctor's offices or hospitals may involve biofilms, it's not just about HS by any means. How can doctors afford not to be more aware of such things?