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,...
http://www.mayoclinic.org/diseases-conditions/dandruff/basics/causes/con-20023690
https://www.clinicalkey.com/topics/dermatology/seborrheic-dermatitis.html
I get irritated about this sometimes because my view is that HS is probably caused by infection and using medications to treat it that can invite infections doesn't necessarily sound very smart offhand, even if TNF-a blocking has gotten some good results or made improvements in many patients.
The manufacturer's statements for Humira have come to include that it should not be used to treat pre-existing infections. Even if we have trouble blaming HS entirely on infection, I haven't seen a lot of argument against the common notion that infected lesions can be something of a fact of life with HS, so with HS I suppose it should be used cautiously at the very least?
On the other hand, I have a surprising list of everyday things that are also supposed to be able to inhibit TNF-a including zinc and turmeric that have caused improvement in some people's HS, and I've never heard the same warnings associated with them that they might promote infection. You may also have the option of quicker cessation of treatment with that kind of thing if you have a bad reaction whereas mAbs might be able to stay in your system for a month?
Maybe a dandruff shampoo might help keep the scalp symptoms in check if you continue with Humira??? (BTW, last time I was reading here I think a couple of people reported that Head & Shoulders dandruff shampoo made an improvement when applied to their HS lesions and rinsed).
Ask your doctor, because I'm the furthest thing from one myself. You might even ask them if they'd like to (cough) join some of us patients in studying bacteriology more enthusiastically. ;-)
Vedolizumab sounds like it might be something similar? Things that end in "mab" often signify a "Monoclonal AntiBody" against something or other - the Dead Mayan Kings, I like to call them because that's what their names all sound like to me. Humira = adalimumab = antibody against the inflammatory protein TNF-a.
Let me look this up...
Vedolizumab = antibody against integrin 47, it's approved for treatment of Crohn's Disease and ulcerative colitis.
https://en.wikipedia.org/wiki/Vedolizumab
I can't recall having heard of it used in HS before although it might not be a great leap with the amount of association between Crohn's and HS. No idea what you might expect from it or might want to watch out for when using it, though. Sorry I couldn't be of help.
Let me begin with what I think causes HS to begin with. I could be wrong as it is just a theory.
I think that people with HS have over active Apocrine Sweat Glands. This could be genetic, or from hormones, or whatever. But they are overactive none the less. They secret far to much sialic acid. Although sialic acid is a weak acid, too much acid causes a chemical peel of the skin surface. Since most people with HS are either overweight or smokers (I am a smoker), they have poor circulation. Skin damage cannot heal without oxygen. The areas of HS typically do not get much oxygen from the outside air and are damp, so skin to skin, or clothing to skin contact causes chafing. Since the only oxygen available for healing in those area's are from the blood it must be carried by capillaries to the skin surface. Since the area does not heal properly and is damp causing chafing, anaerobic actinomyces that are normally harmless invade the area.
These bacteria thrive in an oxygen reduced to oxygen free environment with the proper rich medium and can cause major skin problems. They are also very difficult to kill off once you have an infection.
Flares are caused because the hair follicle is damaged by the friction and chafing. When stress, fear, sexual stimulation, etc (all triggers for apocrine gland excretion) these excretions build up under the skin along with sweat and sebum. This is combined with white blood cells, T-cells, etc. that your body naturally sends to try to kill the invading bacteria and cause the flare. Since the low oxygen bacteria are slow growing and your body is unable to kill it they instead form a barrier around it causing the hard lumps under the skin. If the fluid becomes built up to the point of being large it erupts just like a volcano would draining to the surface. The dead white blood cells and T-cell cause the putrid smell.
There has been very little research done on HS, but I have found everything I could get my hands on. The most helpful were two studies done on the contents of HS lesions. One was a flawed study done in 2013 trying to link HS to Staph bacteria. The flaw was that a normal culture test should only take two days and they did a "prolonged test" of 15 days. They found Staph in about 90% of HS lesions. Staph grows rather rapidly, so what they really did is try to design a test to prove their theory. Bad science at best, fraud at worse.
One thing about that study that was helpful though was that in almost all HS stage II and III lesions they detected Anaerobic Actinomyces. These bacteria are on the skin surface and like I mentioned before if they can invade your skin they cause big, big, problems. The main one detected was Prevotella and in some (I am thinking probably femaies) A Israelii (as it is found in the pelvic region of females). These bacteria are very slow growing and do not normally show up on a culture test as they take at least a week to manifest on the culture being used. So although the study was flawed as far as Staph it did provide useful as an insight to the disease itself. Most cultures of HS lesions show no pathogens because the cultures don't test for Anaerobic bacteria.
The other study done in France shows that 76% of stage I HS lesions were 99% Staph. In the other 24% they showed the same as Stage II and Stage III which is predominately Prevotella. What this indicates to me is that HS is now being over diagnosed as a lesion with 99% Staph is nothing more than a boil.
In researching Prevotella and A Israelii, it appears both can cause terrible infections. In the case of A Israelii it can cause a condition known as Cervicofacial Actinomycosis. A life threating desease of the face. It causes large boils, with suppuration, draining sinuses, sinus tract formation (Sound Familiar?) It is often misdiagnosed (Sound Familiar) and if the infection gets to your brain you are dead. At least with the locations of most HS boils death should not be an immediate threat.
Cervicofacial Actinomycosis is classified as a very rare disease. It is mostly caused by poor oral care or tooth decay or injury to the jaw. It was at one time much more common and the standard treatment was Ampicillin 500 mg every 6 hours for a period of 6 months to a year. This was needed as the Anaerobic bacteria are hard to kill and if you don't have a long course treatment with strong enough doses it just keeps coming back. (Sound Familiar?). Today the treatment is still Penicillin. They now treat it with several weeks of IV Penicillin G in the hospital with 500 mg Ampicillin for about a month after discharge from the hospital.
I mention this because when I had my first major flare from HS (golf ball size on my scrotum) I went to a very old (in his 80's) Doctor. He misdiagnosed it as an infected sebaceous cyst but prescribed 500 mg of Ampicillin every 6 hours for 10 days. The boil never broke open, but shrunk and then a waxy substance came out of my pores for 3 days and it dried up and didn't come back for over a year. Well he retired and I have been to many doctors and dermatologists since. I have been asked by many if I ever had anything that really helped. I have told them Ampicillin and have either been ignored or been told on at least 3 occasions "I would not give that to anyone". So there you have it. Won't give you that which seems to work, please take two Tylenol and call me in the morning.
Now I do realize that doctors over prescribed penicillin based drugs especially though the mid 50's, all through the 60's and into the 70's, but anaerobic bacteria are impervious to many of the newer antibiotics that doctors prescribe for HS. In my research is shows that Ampicillin is the only effective stand alone antibiotic for anaerobic bacteria. These days they recommend it be combined with Clavulanic acid (to assist in killing off any resistant strains of other bacteria in the case of Cervicofacial Actinomycosis).
Steroids don't kill them, Keflex doesn't kill them, tetracycline, dapsone, predisone, etc. (excuse me if I spelled some things incorrectly). None of it works. Penicillin based drugs are the only thing that works and it seems doctors will not prescribe them, or if they ever do only do for 7-10 days which is not near long enough, or they give some other antibiotic that has no effect on it whatsoever. For those allergic to penicillin there has been some success in England using Clindamyacine (SP) but it has to be combined with another drug starts with a R but I forget the name. They gave doses over a 10 week period with pretty good success.
Now the hard part would be (I haven't tried yet but am going to try to convince my GP to try a long term use of ampicillin and clavulanic acid) to get a doctor to go along with the treatment long term. I would think at least 3 months. Longer if you can convince them.
If you can it then comes down to what to do to try to prevent future infections. Obviously you cannot just will your apocrine glands to shut down. As I mentioned these glands secrete sialic acid. They also secrete an oily substance. Doctors don't know why but as always I have a theory there as well.
Going back to caveman days. Lets say you are walking along and encounter a wild beast, you become scared to death and must "fight or run for the hills". You body secretes this oily acid substance for two reasons. One the extra oily substance lubricates your underarms and groin area because you will either be running or fighting. If you run you need extra lubrication. If you fight the sialic acid is also an anti microbial and if you get injured in those areas it helps to fight off bacteria such as staph. I also think this is why HS boils have little to no staph infection in them. The sialic acid that builds up in the boils are effective in killing off staph germs.
Same holds true with sexual stimulation, you sense you may be able to "jump somebody's bones", so you will need extra lubrication in the arm and groin area, plus the sialic acid may prevent you from getting a STD. So I think this is the reason for the glands to begin with.
So HS sufferers produce too much of a good thing and good bacteria that normally causes no problems for most causes the problem by being able to get under the skin and thrive without oxygen.
So what is a person to do. Well I have started to take niacin as niacin opens up the capillaries to the skin surface. You need to start slow as it will give you a "niacin flush". The flush is harmless, but it can be rather intense. It decreases as your body gets used to it. I started at 100 mg three times a day and now take 500 mg three times a day. In researching niacin there is a prescription brand that is time released. Only difference in that and over the counter is that the time released kind can cause liver damage (both the prescription brand and OTC time released and slow released types) so I take straight niacin. The time released types prevent the flush, but you need the flush as the idea is to open the capillaries up. I am also taking 1,000 mg turmeric twice a day and 50 mg zinc as I figure it can't do any harm. Never heard of anyone dying from turmeric.
As for diet, I have tried elimination diets and have really found nothing that seems to trigger my flares. I do break out in pimples even at my age if I eat lots of fresh tomatoes, but they don't seem to have anything to do with my HS. In doing research though I seem to think there may also be some correlation between HS and lactic acid. Anaerobic bacteria have something to do with it, women produce lactic acid around the time of their monthly period and often have an increase in flares. Lactic acid production in women goes down during pregnancy and from my research sometimes HS goes into remission. Lactic acid spikes after birth and it appears HS flares up again in women. I am not sure of the entire connection between the two, but I think there is something to it.
Anyway I have rambled on long enough. Hope this helps a little. I am not a Dr. or micro-biologist, but learned just enough in high school and a few years of college to be able to research stuff for myself. Especially when it appears the medical community either doesn't care or is not willing to spend any time on it.
Good Luck.
The first year i was on remicade i also got scabs which when i peeled them off hairs were stuck in them . I lost hair too. It didn`t itch. I was told by my mp it was psoriasis. I got Betamethasonlotion i had to put on the scabs two times a day and after a while they vanished to never return again.
I hope this helped.
greetings Spaceteddy