Anyone on long term antibiotics for hs..do they work? Is it safe to take antibiotics indefinitely?

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Hi all am new to this site and discussion hope everyone ok?

I've had HS for about 6 years but only got to see a dermatologist today he recommended going on a long term antibiotic ( name begins with L ) have any of you seen an improvement with using a long term antibiotic and also isn't it damaging in the long term to be on one indefinitely? I did ask the dermatologist if there were any long term risks but he kind of skirted around the question! Any replies would be much appreciated Thanks in advance smile

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  • Posted

    I have been lymecycline, doxycycline, Benzoyl peroxide, such as Brevoxyl or Triaz, clindamycin, erythromycin, and tetracycline and i have recently just had isotretinoin been on this for 2 months but did not agree with me i was so poorly with it which they have now stopped and have been advised going to be on antibiotics for rest of my life but they will have to keep changing it every 3 -4 months as your body will get use to them and will not be affective with any antibiotics there are risks and side effects hope this helps if you would like any more information please message me ty
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  • Posted

    Two different ones they they tried with me gave me vertigo and they didn't work anyway. Sorry!
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  • Posted

    Thanks for replies smile I was told that the lymecycline will take between 3-6 months to have an affect anyway sad this condition really is a nightmare as I'm sure u will all agree...time off work when the abscesses make walking/sitting/moving! Painful is something I used to dread trying to explain to my boss, I always feel like there's a stigma attached to boils that people wrongly assume it's down to poor personal hygeine. Ahh well looks like another load of pills to rattle around my system already on 4 lots of tablets for chronic pain in my shoulder and knees that the docs don't seem to know or be bothered by what the actual root of the problem is..anyone else get joint pain? Could it be linked?
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    • Posted

      Some antibiotics cause joint or tendon pain. (look up side effects of your antibiotic) But it could be caused by another autoimmune condition. HS is autoimmune so there's a high chance people with HS could develop other autoimmune conditions.
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    • Posted

      Thanks crystal the HS started about 6 years ago the knee pain (both knees) about 3 years ago and shoulder pain in one side about a year and a half. Feel like I'm falling apart!! I will look into the antibiotics although I've been on and off fluoxicillin for the past couple of years I haven't been on anything long term before. I'm also looking into whether the contraceptive implant may have triggered my HS as only today I realised they started around the same time?!
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    • Posted

      Like Crystal said, once you have one autoimmune disease, you're automatically at risk for more. It could be Fibromyalgia, or Rheumatoid Arthritis, or it could be nothing. I would talk to an orthopaedic doctor and get some x-rays or MRIs just to be safe. Also, hormones can definitely influence HS. Mine doesn't seem to give a crap about my hormones one way or the other. But a lot of women have breakouts that ebb and flow with their...well flow. So, I'd say keep an eye on it, maybe try an IUD that doesn't contain hormones?
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    • Posted

      I hope you are well. I admit that I'm very new to my diagnosis, and groups like this are so helpful! I've read that this is an inflammatory autoimmune disease, and wondered the same. I was also experiencing terrible pain in my knee, ankle and hip until I started taking doxcycycline. I also worry about the side effects, but within 2-3 weeks, I'm flare free for the first time in about 10 years. I am due for a follow up in April and I could kiss the Dr haha. I recently also saw a post on a HS awareness page, that long term is bad. I have noticed that my skin feels softer (for a lack of better words) since I began antibiotics. A friend in the group noted that it causes trouble for the immune system on top of the fact that the disease is hard enough for it. He said they worked for him as well, at first. Over time, his have started coming back worse and larger than ever before. I plan on asking my Dr about that and the long term effects of the antibiotics on the skin/body/immune system at my 2nd appointment. I literally just registered to read the replies and I'm following for more information. This disease is so horribly painful, yet everyone I know who suffers is always so kind and helpful. Thanks and peace to all

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    • Posted

      Hi I have never been on long term ab's but have a friend who is.  She is much worse than me.

      She takes a couple of them and changes them every 3 months or so otherwise she might become resistant to them.  She has been on them now for around 6 years continuously and only gets the odd flare up. x. 

       

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  • Posted

    So, I'm not sure how much your derma explained to you, so I'll start with the basics. Unlike MRSA and Staph, HS lesions are not caused by a bacterial infection. They're a buildup of white blood cells in the apocrine glands. The wonderful lesions we all experience are an inflammatory response to some generally unknown trigger. Granted, the abscesses are extremely prone to becoming infected, they're like a breeding ground waiting to happen. But bacterial infection is not the primary cause. HS is an autoimmune disease.

    The antibiotics will help to a certain extent, because most are very powerful anti-inflammatories. Tetracyclines are a favorite of dermatologists for that very reason. The problem, or problems really, are that these medications only work for a limited amount of time. Eventually, within 3-18 months depending on the person, our bodies become acclimated to the drug and every medication in that particular class of antibiotics, is no longer effective. I myself was on Minocyclin for about 6 months before it stopped working.

    There are also some pretty severe side effects to being on antibiotics long term. They can wreak havoc on your gastrointestinal system, because they kill all the bacteria in your gut, including the good stuff that helps you digest food and fight off other infections, which is why a lot of doctors recommend a probiotic. And specific antibiotics can be toxic to certain parts of your body if taken long term. Tetracyclines for example are odotoxic, which means they can damage your hearing, permanently. I'm not saying they will, just that they can. If it starts with an 'L' then it'll probably be either Levaquin (Levofloxacin) or Lincomycin. They're both pretty powerful antibiotics, Levaquin is used to treat a lot of skin infections, even plague, and Lincomycin is used to treat Staph.

    So if you do go down this road, make sure you talk to your doctor about side effects and what you should look out for, and definitely take a probiotic religiously. If he doesn't explain the risks, get another doctor. Both the antibiotics I mentioned are powerful enough to cause C difficile infection, seizures, etc. I'm not saying you shouldn't take them, because they can offer temporary relief, but you need to get all the information and make a decision that's best for you. The doctor's not the one who has to live with the consequences, you are. It's your body make sure you're the one making the decision.

    I would really recommend looking into doing an elimination diet, or an autoimmune protocol. A lot of people, myself included have found that certain foods or food groups trigger breakouts. Nightshades, gluten and nuts tend to be very common triggers for people with HS. I cut out nightshades completely and as long as I avoid them like the plague, I stay in remission. Stress can also trigger breakouts, don't ask me why, but stress generally aggravates every autoimmune disease. HS is no different. I do yoga and I swim a lot, and that really helps. Just make sure you have a way to manage your stress. That'll go a long way as well.

    Good luck and ask a lot of questions!!!

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    • Posted

      Thank you for taking the time for such an in depth reply smile it was the lymecycline that the dermatologist said to try first to be honest he didn't explain much about side effects until I specifically asked about long term health implications of taking an antibiotic for so long...His reply briefly mentioned thrush sensitivity to sunlight and stomach upset. I am very wary about taking a medication long term when it isn't definitely going to work by the sounds of it if I start to notice an improvement it will be time to change onto a different antibiotic! I will definitely do some more research and thanks again for your replies smile
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  • Posted

    Hi I took textraclycline on a daily basis for around a year but they didn't seem to help so I stopped them.  They might work for you though and I think it is worth giving them a try.  Any meds can have side effects but it could be worth it if they help.  x
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  • Posted

    Hello Katrina

    I have tried lots of antibiotics long term and for me, doxycyline and tetracycline didn't work, isotretanoin made it worse and now I'm on Lymacycline like you and for me it is working well.  I have been on it about 5 months so bear with it.  I asked the same question as you about taking them long term and the dermatologist said to me that taking them makes your organs work harder, e.g. your liver so just don't over do it with drinking alchohol etc, but mostly it's fine.  There are lots of side effects on isotretanoin and doxy and tetry give you thrush and make you sensitive to sunlight but lymacycline doesn't, it's the best one I have been on for me and there aren't really many side effects of note.  Good luck with finding what suits you

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