worsening hs?

Posted , 3 users are following.

Hello everyone! My name is Monika and I am 24 years old. I have been dealing with HS ever since I was young. Initially, it started in my groin/leg area and over the years has progressed underneath my arms, on the back of my neck and more recently, on the side of my neck, and even more embarassingly, on my face. I was told that this condition tends to get worse with age. I was just wondering if anyone else gets terrible bumps on their face, and how do you deal? I was prescribed an ointment that barely helps and an antibiotic that just makes me feel sick to my stomach. I was wondering if anyone has a holistic approach since i'm not big on pharmaceutical medication and if you can share any helpful information, that would be greatly appreciated (: 

1 like, 8 replies

8 Replies

  • Posted

    Hi,

    I am 29 and I've had HS since I was 14. It started on my inner thighs and then my groin and now I have it under my arms, breasts and one on the back of my neck. I also have acne and I get some pretty horrible cysts on my face sometimes.

    I am on Doxitab right now and I think it is making my face worse, and I am still getting infections under my arms after 1 month of taking it. I also use Benzagel 5 on my face and it seemed to be working for a while and it has stopped working now. I have taken other antibiotics in the past and they never seemed to work. I took Tetracyline for 1 year and it didn't really do anything. So doxitab is the same kind of antibiotic and I don't know why my dermatologist prescribed it when the last one didn't work.

    I took Acutane too when I was 15 or 16 and it made my HS worse but cleared my face while I was on it. As soon as I stopped it, my acne came right back, HS got a little better.

    Anyways I think maybe you should look up inflamation and how to help reduce it with food, mainly natural and healthy foods. Get away from gluten and complex carbs. Stay away from a lot of dairy, drink almond milk instead (with no soy) and try not to over eat meat. If you can afford it, then buy meat that is not given anitbiotics or hormones. Eat more nuts and fruits and veggies. Drink water according to your body weight, most people need a minimum of 8 glasses per day and I would bet you don't get that much (google it). It is important to flush out your system of toxins and keep your liver functioning well. Drink water with cucumber in it. Just slice some cucumber and let it sit in water overnight. It is suppose to help detox. Eat a paleo diet. Avoid too much sugar. I am not saying this is going to cure your HS, but it will help and it is good for you anyways.

    You should also try your hardest to lose weight , if you are overweight. And you need to stay away from smoking. It is making your HS worse, if you do smoke. Not to mention its just not good for you either.

    I found that hot compresses do help my face. It seems to help a pimple or a cyst go away much faster and not get as big. It has been a long time since I stopped using soaps on my face, everything I tried was making my face red and really dry or red and really oily. I only wash my face with warm water 2 or 3 times a day. I just splash my face and it has helped. I don't get half as many pimples as I used to when i was using all that crap from the pharmacy. I only exfoliate every second day or so very gently with Aveeno active naturals exfoliator to open up my pores.

    Some other advice I can give you to try would be to find a way to control your stress because it can make HS worse. Try exercise because everybody knows that it reduces stress if you do it regularly. Or you could take a class on meditation, or yoga for beginners. You could go swimming, and I have also heard from someone with HS that they thought the chlorine in pools helped dry out their HS while they were taking and aqua aerobics class, which could make sense because chlorine is there to kill bacteria. There are so many ways to reduce stress and it is definitely worth looking into.

    So all these things seem simple when you read it or even as I write it, but I don't even do all things I have suggested because its so hard. But ultimately it is a healthy lifestyle and even if it does not get rid of your HS I am sure it will help it and it will of course help you. Just eating right will make you feel better generally, then add exercise and increase that good feeling and jsut continue making small adjustments until you reach the top.

    Good Luck! I am trying all these things too and slowly but surely I hope it will reach my goal of eating healthier, losing weight, and taking care of myself mentally and physically.

    • Posted

      And I forgot that being overweight is also linked to higher inflamatory issues (like HS) and also the release of more cortisol when in stressful situations, which also causes even more inflammation in the body. So those things alone are obviously not good for HS.
  • Posted

    Try cutting out nightshade vegetables! I have has HS for years, took meds, shots, laser hair removal and surgery... spent lots of time and money.  3 months ago, I cut out nightshades and I am now in remission! The day I started no nightshades, I had woke up with 5 inflamed tunnels of cysts.  My husband said it was going to be the worst outbreak ever.  I had cried myself to sleep the night before.  I had cooked a lot of different things that weekend so I Google about food causing HS.  There wasn't much on it but I ran across 2 blogs talking about nightshades and autoimmune conditions, including HS.  The inflammation started going down that day with no nightshades! They would usually take about 3 days to reach their worst point before they would start to go down.  They started going down that day! I was so excited! I was strick on the nightshade diet.  The next 2 months, my cysts did not grow or become inflamed but they would "open up" like they were raw or something? This happened every few days.  I just happened to read the ingredients of shredded cheese and found it contained potato starch! It keeps shredded cheese from sticking together.  I ate cheese probably twice a day and never even thought to look at the ingredients! Now that I'm shredding my own cheese, my cysts are not opening up or raw anymore! No cysts or inflammation for the past month! Praise God!  The other girl mentioned smoking making HS worse... tobacco is a NIGHTSHADE!  You can Google a list of them.  I rode bikes with my family for the first time in years last weekend! Try it! No nightshades have changed my life! Good luck! Oh and about being overweight and HS... My doctor has a lady that weighs 85 lbs and has it very bad.  
    • Posted

      That is really interesting about nightshades. I have been reading a lot about inflammation lately, after my Dermatologist offered me soem immune suppressants.

      For being overwieght, I think a lot of people misunderstand what the importance is. The problem is not really what you weigh but it is a matter of how much your body parts are rubbing together, how well you handle insulin and what is happening with your hormones.

      When you are overweight, it has been proven with hundreds of tests that overweight people have disturbances in hormones because of how their body is absorbing (or not absorbing) insulin. And let's all be honest that most overweight people are not eating a balanced diet and we also so not eat on a regular schedule, and that effects our hormones and blood sugar level, which can cause problems for your body trying to fight infection. So if you have HS and you are overweight, it is a problem and it is probably going to make your HS worse.

      This does not mean that you have HS because you are overweight. I had HS before I gained weight and I know there are people who are 'skinny' and have HS. But when you have HS and you are overweight, your HS can be worsened by, for example, your thighs rubing together, or sweating more than you would if you were skinny and in shape.

    • Posted

      I tried the immune suppressant drugs for my HS about 2 years ago and they didn't help me. It did help soreness in my bones but not my HS.  Hope it works for you! The immune suppressants are a cheap easy way to go if they'll work. 

    • Posted

      I didn't actually take them. My dermatologist only offered them to me but I said no because I wanted to look into them myself. And not to mention that they are NOT cheap at all lol She told me it would cost 3500$ a year to take them because they are not recognized for HS and therefore not covered by any insurance, and definitely not public insurance. I am in Canada so mabye it is different here. But when she told me about them I started to look into inflammation and other things I could do for that, because that is what immune suppressant basically do, they stop the inflammation response your body has when there is something wrong (or when it 'thinks' there is something wrong.

      Any way I have looked into them and right away I knew they are not anything I would try unless my HS was ridiculously unbearable. They do more negative things than what they cure, not to mention they have been linked to cancer and that is not something I am willing to mess with. HS is enough for me lol Apparently a person would have to be on them for several years for them to make a real difference and so the cost is a real issue for me since I have 2 children to take care of.

      At least you tried though and now you know.

    • Posted

      I don't blamed you! That is expensive! I tried plaquenil (I think that's how you spell it?) it's an oral drug and it was very cheap.  My doctor also mentioned a shot that you would have to give yourself but the side effects scared me.  That almost sounds like what they talked to you about.  I believe I do remember her saying insurance wouldn't paying for it either because of it not being approved for HS.  It really sounded scary.  I'm glad we didn't try that one!

      My HS was always worse right before or during my period.  Your immune system goes nuts during that time.  I just started a few days ago and now it's over today and not one cyst!! First time in years! I will always suggest to try no nightshades to everyone I know with HS. Here's the link to what I read... 

      https://patient.info/forums/discuss/hidradenitis-suppurativa-you-can-have-your-life-back--38578

    • Posted

      Thanks. I am going to check it out. I have started changing my diet and I will definitely give this a try soon. I have already cut out milk because I used to drink a lot, and my acne cleared up quite a bit, not completely, but not my HS which is still going strong. I am trying to cut out wheat and gluten but it is so hard because its in everything.

      I think everyone should give this a try.

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