Hidradenitis Suppurativa - at my wits end

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Hi all! I'm currently 26 years old and I suffered from facial acne when I was in my late teens for which I was prescribed Roaccutane which proved successful. Everything then went quiet for a while and I enjoyed having relatively flawless skin.

When I was at the tail end of 22 I started getting boil like lumps under my breasts which would sometimes burst with nasty yellow pus inside. Sometimes I couldn't help but squeeze and would do so until they bled (bad I know!). As a result I have been left with terrible scarring. 

Just before I turned 23 I moved to Dubai for a 2 1/2 year stint where the boils continued to get worse and spread to my inner thighs, down my sides where bra straps go round the body and even sprouted up on my bum cheeks. I attended a Russian dermatologist while in UAE and was told it was because I favoured shaving as hair removal and should consider laser hair removal (funnily enough a service she provided). Other doctors blamed my weight as I am obese but I found this to be an easy answer for them.

When I returned to the UK I went straight to my GP who then referred me onto the local hospitals dermatology unit. I was put on another course of Roaccutane - which I am supposed to still be taking but I stopped as the side effects became unbearable for me with absolutely no improvement. The doctor has confirmed I have Hidradenitis Suppurativa and said when I go back on 29th December he will change me over to a drug called Dapsone which is regularly used to treat leprosy. Has anyone else with this condition taken this drug, if so was it successful? If not what do you take that you find helps? I'm losing the will with doctors at the moment. When I attend on a monthly basis they don't even look at the current state of my body to assess if it's improving or not, they just take my word for it. I also feel I'm doing a lot of research into conditions and treatments myself whereas they suggest nothing.

Any advice would be of help and sorry this is quite a long one!

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  • Posted

    Forgot to mention - the skin in surrounding areas is a dark red/angry purple colour, sometimes is wet and gets smelly no matter how often I shower. Very unpleasant! 
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  • Posted

    Hi Rachel,

    First let me just say, you are absolutely not alone in dealing with this. I've been suffering from HS since I was 14, and did not receive a diagnosis until I turned 23, which I understand is about average as most doctors know very little about our condition. So I feel your pain, literally and figuratively smile and I'm very sorry that you've joined our club. But don't get discouraged, even though there's no known cure, there are a lot of options out there that can put you into remission.

    I don't have any personal experience with taking Dapsone, but I do know it's a type of antibiotic that's supposed to treat bacterial skin infections by stopping bacterial growth. It's also a pretty powerful anti-imflammatory. Unfortunately, this is not a long-term solution for a couple of reasons. One, HS is not caused by bacteria. It's possible for the breakouts to become infected in which case you should be on antibiotics, but bacterial infection is not the primary cause of our breakouts. Doctors don't know very much about HS, but they do know that. If this medication helps your symptoms, it's because of it's anti-inflammatory properties. Secondly, if it does help to supress your breakouts, it will only be for about 6 months to a year and half because you will develop resistence to it and pretty much any other sulphonomide class of antibiotics. And third, antibiotics can cause a lot of digestive upset, because they kill off all the good bacteria in your gut that you need to support your immune system and digest food. Being on it for ten days isn't so bad, but long-term it can wreak havoc on your GI system. So if you choose to go down this route, make sure you take probiotics religiously and eat a lot of yogurt.

    I've tried a lot of different "treatments". And the one thing that I've found over the years is that everyone with HS responds to different treatments differenty. It took a little over a year for me to figure out what worked for me. I went to a dermatologist who gave me antibiotics but while they helped, they didn't do all that much. I tried laser treatments, but again that didn't help very much either. He finally recommended that I receive an operation that would remove my apocrine glands completely. I did a lot of research on my own time and decided that the surgery was not for me. The doctor basically told me there wasn't much else he could do for me and I finally realized that if I was going to get my HS under control I was going to have to do it myself. (He was not an expert on HS)

    So I did a lot more research, talked to a lot of people on forums like this one. There were a lot of "treatments" out there that were well...out there. But there were a couple that I decided to give a try just because I knew it couldn't hurt me.

    I started taking a turmeric supplement. Sometimes it's called curcumin. I was very skeptical at first to say the least. But I was pretty desperate by that point, and my mother, who is a cardiac nurse told me that a lot of her patients take them to help lower their blood pressure or to help their diabetes. So I gave it a shot. It took a few weeks of playing with the dosage to see any results. And I also find that taking it with protein like a glass of milk, really helps. As long as I take it with food, there's no digestive upet either. It really helped decrease the severity of my breakouts. Instead of festering and getting infected, they would break open on their own and heal much more quickly. It also did decrease the frequency of my breakouts, but didn't eliminate them entirely, so I kept researching.

    Eventually I found a blog that put forth the theory that HS is actually an autoimmune disorder and can be put into remission by simply cutting certain foods out of your diet. These foods are different for everyone, and doing an elimination diet can identify your specific triggers. It was an interesting theory to say the least. And the first time I ever linked HS with food in my head. I still wasn't convinced, but I was willing to acknowledge the possibility. I'd been on a low-glycemic diet for months because of my PCOS and that virtually eradicated my symptoms, so I was willing to have an open mind.

    After doing the diet for two months, faithfully without cheating (hardest thing I've ever done in my life, and I've given birth twice, naturally), I was amazed that I hadn't had any breakouts. None. Zip. Zero. Even the abscesses and lesions I'd had before I went on the diet were either completely gone or just flat. I could not believe that it had actually worked. I slowly began reintroducing food groups like dairy and gluten back into my diet without any issues, until I started eating nightshades again. Nightshades are potatoes, tomatoes, peppers, paprika and eggplants and are a highly-inflammatory class of foods. I practically lived off the stuff before I did the elimination diet.

    I had pasta with tomato sauce one night and when I woke up the next morning, bam! I had a large bump under my right arm. I was stunned. And I still wasn't willing to accept that nightshades could actually be the problem. So I went night-shade free for another week. The bump went away. Then I had potatoes for dinner, and the next morning sure enough I had two round bumps under my right arm again. Just to confirm I went another week without nightshades, the bumps disappeared, and then I had mexican for dinner (lots of hot peppers). When I woke up, I had two bumps under my right arm and a couple in my girly parts. And that settled for me.

    I have been nightshade free for over six months, and I haven't had a single breakout. Not one. I haven't been breakout free since I was sixteen. I still take turmeric, but honestly that's more for my facial acne.

    Now that said, stress can cause you to breakout as well. So I suggest taking up yoga or swimming or something that can help you deal with stressors. Shaving can aso trigger breakouts, so be careful. Definitely stop squeezing as that can speed up the formation of sinus tracts under your skin and it will spread everywhere. If you have breakouts under your arms, stop using anti-perspirant and experiment with deodorants until you find one that works. I use Sydelle if you need an example. And be careful with any bodywashes or soaps you use. Fragrences can set this off as well. All free and clear is a great laundry detergent to use, most of my HS buddies swear by the stuff.

    Also, you didn't mention whether or not your doctor classified you as stage 1, 2 or 3. If he didn't give you a classification then he doesn't know what he's talking about and you need to find another doctor to help treat you.

    Also, you mentioned that you are very overweight. Unfortunately obesity can aggravate HS a lot. Doing an elimination diet will shed the pounds (I went from 170 to 125). If you decide it's not for you, then I would recommend seeing a nutritionist to help you lose weight. I wouldn't recommend a lot of heavy exercise as sweat can also exacerbate the problem. Swimming is a really good way to get fit and stay cool.

    My advice is do a lot of research. Definitely consult with a doctor, but make sure you stay in control of your healthcare decisions. Ask a lot of questions and if they don't have the answers, find another doctor or do more research on your own. I've talked to a lot of people that go to a naturopath for their HS and swear by it. I was considering it before I learned about the elimination diet thing, but it's something to consider.

    Don't give up. Keep trying until you find something that works for you. Talk to people in the HS community for support and suggestions. That made all the difference in the world for me. Just remember, you are not alone in this. Good luck!

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    • Posted

      How do you know what's foods to eliminate? I would like to try..but I am lost..Can you tell me how to begin?
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    • Posted

      Look up the Autoimmune Protocol, also known as the AIP diet. It's essentially the Primal/Paleo diet but also cuts out nightshades as well. I tried to do it on my own, and it was a little overwhelming, so I went to see a nutritionist to help get me on the right path, and then I took it from there. A lot of people just do this by themselves without any help so it is possible, but it's a huge load off to see a nutritionist. The biggest issue is making sure you get all the nutrients and vitamins you need.

      Basically all I ate for two months were chicken and salad, with a little fish and sweet potatoes thrown in. I'd say research AIP and figure out if this is something you're ready for, and then go from there.

      Also, you pretty much won't be able to eat any processed foods. So if you can't cook, you better start cracking open the cookbooks. I got a lot of recipes online to keep me from going insane.

      This isn't something you should do on whim. This is a serious, stringent diet and unlike Atkins or Medifast, cheating just a little bit can set you back to the beginning. Do your research and make sure you're mentally prepared for this.

      My saving grace was a photograph of my armpits flared up at their worst. I kept it in my pocket everytime I left the house. (I considered using a picture of my girly bits but figured that might be taking it a little far). Every time someone brought chocolate or carbs into work, or heaven forbid donuts, I took that picture out and stared at it like my life depended on it. Everyone else thought it was a picture of skinny jeans hehehe.

       

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    • Posted

      Hi Atticus, so i have read your replies to Sidne  and Rachel and they were extremely helpful. I was wondering however what kind of doctor i should make an appt with , i have tried a derm who will perscibe lotions and etc, I tried the gyno they said theres nothing you can do, again like you i am sensitive to detergents, and i am allergic to cephalosporins  which are most antibiotics. When i first went to college i ended up getting a pylonidal cyst on my coxic and had to have emergency surgery and it was not a fun process in college to say the least. I although i am extrmemly interested in this diet and i will start taking tumeric asap. Unfortunately i do hot yoga and wear leggings alot and i cant see myself giving it up so if my diet will help i will be so happy! 
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    • Posted

      Hi Mari, I competely understand your frustration and am very happy I could help in some small way. My second semester in college, I developed a huge golf-ball sized bartholin cyst on my right labia, not an exaggeration, never been more terrified in my life, especially when I saw the scalpel the doc used to drain the thing. I'm still not sure if I passed out from the pain, or from sheer, unadulterated terror. On the upside, after that experience, giving birth was actually kind of a breeze smile

      Anyway, if you start taking turmeric, make sure you eat with it, and have some protein with it otherwise it doesn't absorb very well. Also, brand does matter, the stuff you find in the drug store does not have a high absorbancy rate. I've used a bunch of different brands and I really like Meriva-SR. I work for a physical therapist and he sells them through his practice, but you can buy them on amazon.

      Hmmm...hot yoga. I have to say, I wouldn't do it, especially not in leggings, just because sweat can aggravate the crap out of HS. But if you aren't having any problems with it, have at it. I would start wearing cotton sweatpants instead of leggings or anything with spandex or rayon just to let your skin breathe. I do yoga too, and I love it, I just also love air conditioning. smile I'd say do the diet, and if you're still having breakouts, cut out the "hot" in your yoga, and the leggings and see if that helps.

      As far as doctors go, I've found most of them to be pretty useless with respect to HS. If you're lucky enough to live close enough to a derm specializing in HS, I'd say go and see what they can tell you. But if, like me the closest specialist is 12+ hours away, you're going to have to get creative.

      For the most part, when I was symptomatic, I managed my symptoms, and only went to my derma when I had an infected abscess. I stopped going to see him when I refused surgery and he told me there was nothing else he could do to help me.

      I've pretty much given up on MDs in general after all this. I even switched family doctors, because my old one thought I was being a "hysterical female" about the whole situation. I told him that if he'd ever had an exploding, festering abscess in his testicles and someone came at him with a sharp knife, he'd probably be a hysterical female about it too. That was pretty much the end of our professional relationship.

      I was referred to a D.O., or a doctor of Osteopathy, by a friend. D.O.s are still doctors, but approach medicine differently from MDs. MDs are very pro-surgery, pro-meds. Whereas D.O.s actually look at the whole picture, the whole body. They're kind of a middle ground between an MD and a naturopath, they just focus on wellness, versus symptom control.

      I was very skeptical before my first appointment, and only went to shut my friend up. After being raised by a nurse, I had, and sort of still do, a very no-nonsense approach to medicine. But after fifteen minutes with this doctor, I knew I'd found my medical soulmate. He had no experience with HS, (the majority of doctors don't), but he had all my medical records transferred, and actually did research on his own time and even called around to HS specialists around the country to help me figure this thing out. He didn't laugh at me like my old GP and derma did when I told them about my belief that it was connected to my diet. He just listened, and he was very supportive, and confirmed that there is in fact a link between autoimmune diseases to certain food groups. He's actually the one who referred me to a nutritionist to make sure I stayed healthy when I did my elimination diet. I told him that I didn't want surgery, and he said that it should be the absolute last option, first doctor that's ever told me that. He's now my new GP. He's actually helped get my PCOS and Hashimotos under control as well. So, if you can find a good D.O. in your area, I'd say go for it. Most D.O.s are either family doctors or work in interal medicine and will generally work in the same practice as MDs.

      Good luck with your diet, the first two weeks are the hardest. My nutritionist told me that 85% of patients who stop the diet do it in the first two weeks. If you can make it to day 15, you should be fine. Just keep your eye on the prize and push through it.

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    • Posted

      Hi, I feel so identified with you, l have HS since I have 13 years old and now I'm 32. My last treatment was the surgery and I'm trying with curcumin and clorofila because of my anemia. I found a lot of coincidences in ours symptoms that I want to share with this forum. I hope everyone with HS, have the determination to learn about this disease and their own body to identified which are the causes of your own affection to learn to deal with this. And finally:Trust in Krisna, he can do any for you if you love him with your heart.

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  • Posted

    ive been on an autoimmune diet for a couple weeks on and off. i wanted to know how long into to diet before you saw remission/ no new breakouts? i have eliminated dairy, gluten, nightshades, alcohol, red meats, sugar, caffine, literally ever potenital trigger but i still breakout every day. i can think what other triggers there could be; if you have any suggestions that would be amazing.
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    • Posted

      Hi Tom, not sure if you were asking me or Rachel, but I'll answer anyway. I was already at a pretty advanced stage of HS, and my HS breakouts always started fairly deep under the skin, and I had some pretty well-developed sinus tracts. So it's hard for me to say exactly when I noticed I wasn't breaking out anymore, but I'd say after about two weeks. Unfortunately this is not the kind of diet that you can go on and off of. You're either on it, or you're not. There's no 80/20 rule. It's 24/7 for an absolute minimum of 4 weeks. The longer you can do it the better.

      One thing I will mention, a lot of people start an elimination diet thinking they're eliminating any possible trigger. But it's a little more complicated than that. If you're ingesting any kind of processed food or drink, you're probably consuming some form of potential trigger be it nightshades, peanuts, or gluten. Items that are labeled gluten free are not always gluten free. A lot of foods are made in factories that use peanuts or peanut oil and they don't always label them that way. And nightshades are literally in everything.

      I didn't buy anything but raw ingredients from the store for two months. And even then, I always triple-checked the ingredients lists. Everything I ate, I made from scratch. Annoying as crap, but worth it.

      A food diary is imperative as well. It's the easiest way to identify possible triggers and then confirm them.

      The other variable to consider; you might not have eliminated your trigger food group. If you're doing this diet correctly and not consuming any processed foods, then I would suggest getting a food sensitivity test. Not an allergy test, but a sensitivity test. We call it an Igg or Ige test in the states, not sure what they call it in UK. This test should tell you exactly what you're sensitive to. It could be nuts, it could be some random vegetable, it could be anything, and I mean that literally.

      Stress is also a huge trigger. Even though avoiding nightshades like the plague has put me into remission, I will still get a breakout if I get really stressed out. In fact, I just lost a family memeber a few months ago, and I couldn't do my normal routine, ie swimming and yoga, because I had to go out of town to help plan the funeral and I was so stressed out all week, I actually started breaking out, which just made me stress out more and you can guess the rest. So make sure you have a stress-management protocol. Which is just a fancy way of saying an outlet, someway to relax yourself and teach your body to process stress differently.

      Again, if you are consuming anything that has been pre-made, chances are you're consuming a potential trigger. Most ingredients lists don't come out and say potatoes, or paprika or whatever. They'll say modified food starch, or lactic acid, or spices, or salycylates, or other crap you can't pronounce. So things like mustard, mayo, a lot of salad dressings, vegetable broth, granola, margarine etc. Even some baking powders contain potato starch.

      So if you're doing AIP, do it for the long-haul and really do your research. This isn't atkins or Jenny Craig, this is a seriously stringent diet and you have to be mentally prepared for it, otherwise it won't work. Break out the cookbooks, shop at an organic store if you can just to be sure there aren't any hidden chemicals that might contain one of your triggers, and do not eat anything unless you've prepared it. This is probably the hardest thing I have ever done, especially since I'm really not that great of a cook, but it's totally worth it. Good luck!

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    • Posted

      thank you so much! this is an incredibly helpful productive post. I have only been living on a few foods for just over a month and whilst it has cleared up i am still unsure of what is causing me some breakouts now and then. the only question i have is that you mention lactic acid, why is this relevent? I realise its in olives and/or brine which i have been eating. Also weirdly, sweet potatoes are a trigger for me and pineapple juice for definite. ive only been eating fruits and vegetables and fish (lots of tinned tuna) but still occasionally break out. overall though an improvment at the very least. many thanks
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    • Posted

      Alot of people with HS, including myself, react to lactic acid for whatever reason. I know that stress creates more lactic acid in the body which can mess with our pH balance, and I know stress causes breakouts, so maybe there's a connection there? Can't say for sure. I just know that it's one ingredient I stay away from and after talking with a lot of people on forums like this, it seems like a pretty common trigger.

      And now for the bad news, if pineapple juice (especially if it's fresh and not from concentrate) and sweet potatoes are giving you problems, then you're probably sensitive to salicylates. It's a chemical that's derived from salicylic acid which is a kind of immune hormone that protects plants from a host of bacteria and fungi.

      Unfortunately, it's literally in everything. But sweet potatoes and pineapples contain very high concentrations of it. Google salicylate sensitivity and you should be able to find a food list with all the foods that contain it, and in what amounts.

      I'd really recommend going on a salicylate sensitivity diet. It's even more stringent than AIP, sorry, but it's definitely worth looking into.

      Also, if you're taking any medications or supplements, alot of them contain high concentrations of salicylicates, because it's a great preservative. DO NOT go off your medicaitons before talking to your doctor, but it's something to keep in mind while you're doing this.

      If you haven't already started, start keeping a food diary. The amount of salicylates in food varies so widely across the board, and how you cook it also matters, so make sure you're keeping track of everything you're eating AND how you cook it.

      Glad to hear you're doing a little better, and hopefully this helps get you over the last hump. Good luck!

       

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    • Posted

      thank you very much. thats an extremely helpful and seemingly accurate post. I have asthma and tinitus and other symptoms which suggest you are correct. I have never even heard of this sensitivity and I have spent tens of hours researching HS and diet connections. I will 100% be updating this page after a few weeks of an adapted diet. I have been keeping a food diary for 10 months now so its routine unfortunately. 

      many thanks

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    • Posted

      one other thing. Salicylates dont make me feel any different. for example raisins have a lot of them yet I have recently been eating a ridiculous amount with no adverse mental or physical reaction. Does this rule out Salicylates causing my HS do you think? I appreciate your not strickly speaking qualified, but any advice is appreciated.

      many thanks

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    • Posted

      Not sure about that, it could be that you're okay with dried fruit, or it could just be the way the raisins were processed. Have you tried eating a different brand?

      I know I'm fine with paprika for the most part, but heaven forbid I eat any other pepper spice. I'm also okay with instant mashed potatoes, I guess because it's been freeze dried, but a baked potato sets me off in less than 18 hours. Our bodies are weird like that. It could be that you're fine with salicylates, but the fact that you're sure sweet potatoes and pineapples are triggers for you would be enough for me to try a sensitvity diet.

      If it were me, I'd print out a list of all the foods that are high in salicylates and test them one by one. It'll take a freaking long time, but it might be your best bet.

      I know an HSer that can tolerate a lot of foods that are high in salicylates, like honey and cinnamon, but she can't tolerate most fruits, any kind of mint including chewing gum, pepper, and a few kinds of nuts (can't remember which ones). She also has to be very careful about eating certain foods in moderation. She can tolerate mushrooms by themselves but if she combines them with another food high in salicylates then she does break out.

      I would also really recommend getting an IgE test. It might help you narrow some of your sensitivites down so it won't take so long, and it'll be easier to confirm if you are in fact sensitive to salicylates.

       

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    • Posted

      ok cheers, yeah im going to try avoiding them for a couple weeks and look out for any improvement. Also definitey going to get an IgE test done soon. Thanks for all the info.
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