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HS and the never ending story

Posted , 4 users are following.

lance1279
lance1279

I'm Lance, 36 year old from Ohio. I found this site through searches and so grateful to find others with this.

I've been dealing with HS for three long years. I started with going to the local hospital to get it lances and drained. Then a week later, another spot, then another. Next thing I had four large spots. Then my right armpit started. Along with one on my upper groin.

I've give to quick care after quick care, hospital over and over, doctors. All did the same, antibiotics, drain when could, repeat. Even had one tell me "you should bathe more". I shower twice a day mostly.

Recently I went for a very large flare up and got a referral to a surgeon. She rolled her eyes and said "no, lifelong antibiotics. Despite it will kill your good bacteria and cause GI problems". She drained one that was wretched and barely numbed it, half heartedly packed it and walked out of the room in disgust. Told her I was taking six aleeve and two Motrin 800 a day and said that's too much, they don't hurt that bad. I'm not a drug seeker, but the aleeve is killing my stomach, the pain most days is crippling where I have a difficult time at work, can't play with my children and have a self conscious issue with it with my fiancee (of course, she's beyond supportive, but that's my esteem issue).

I'm calling my surgeon in a couple days who did my pilionidal cyst extraction in 2001, he did it when every other professional said deal with it. The relief, after the pain of healing, was a life changing feeling.

Anyone else met with such situations? Maybe just where I am and our terrible Medical professionals. Thank you for your time and help :-)

0 likes, 5 replies

5 Replies

  • lance1279
    lance1279

    Posted

    I haven't figured out how to edit.

    I just want my life back, I know compared to others with this or other conditions, I may sound like I'm whining and I really don't mean to. I know some have it way worse than I.

  • aussie76
    aussie76 lance1279

    Posted

    I've had the Pilonidal as well but the HS has been around for 20 years and it seems impossible to treat so far...  I got told a long time ago it is in my blood forever...  Some dermatologist more determined than others, some defeated as soon as they see it.  GP's treat the infections with antibiotics... yep I know how it can go on for years....

    I've all shapes and sizes... the only thing consistent the pain... they're always there - it's terrible and I'm glad you recognised the same improvement I did with at least the Pilonidal removal.

    I had a really good result from Clindamycin (IV in my case)... administered for the Pilonidal, actually put the HS in remission as a side effect.  If you read up... new treatments involve Clindamycin& Rifampicin - chase it down maybe...

    I've had wound swabs over the years and was given Fluclocillan, Amoxillin, bactrim, ro-accutane at high doses...  nothing Clindamycin did!!!!  It gets used to put it in remission... you might need multiple followup courses by the sounds...  but it is magic... it has completely stopped for after one of the more advanced examples of the disease for 20 years...   Is suspect it will come back... but I will be telling my dermo to use this drug next time...

    • lance1279
      lance1279 aussie76

      Posted

      I'll look into that. Dermatologists here are sketchy and rarely do anything other than placate the situation, not solve it. But at this point, I'm willing to try anything. Thank you!!!
  • sgf82
    sgf82 lance1279

    Posted

    I think the best advice would be to seek a dermatologist in your area that treats hidradenitis. I agree that general docs won't know much about HS, and won't know all the treatments available. I've had really bad experiences with general practioners trying to treat it.

    Looks like there's actually a HS Institute in Westlake, Ohio. Not sure how far they are from you. Maybe you can get a good dermatologist recommendation from them.

    I've also tried clindamyacin (foam and pills), but neither worked at all. I was also put on minocycline, and that did worked for about half a year before my HS returned. It's a pretty mild antibiotic, and doesn't affect your gut much as antibiotics go. It did make me a little dizzy and can have some weird side affects from long term use though.

    Infection is a side effect of the disease; the primary cause is an inflamatory reaction that's not fully understood. The minocycline worked because it also has anti-inflamitory properties.

    I'm now on Humira, which isn't an antibiotic but an anti-inflamitory medicine. There are commericals for Humira all the time on TV, mostly for psoriasis and arthritis. It's been working fairly well. I haven't gotten any major flare ups, though some older HS  tracts haven't healed up, and I'll likely need surgery to take care of those. Humira is the only drug approved by FDA for HS. It's expensive, but if you have insurance it should be covered by now. I take it every other week as a shot.

    Lots of people say diet affects HS, and cutting nightshade family foods help. Try cutting out all potatoes, tomatoes, and peppers and see if it helps.

    Best of luck to you.

     

  • IveFigOut
    IveFigOut lance1279

    Posted

    Hi I'm Sydney and if been suffering with this horrible skin condition since I was about 18 I'm 29 now and I've been through it all antibiotics pain killers and different acne solutions I've had two drains of my abscesses done in the past and I didn't like the nurse or doctors attitude.. I've been trying a few things to help me with this condition at home. Do you smoke? I was reading this article to witch we replied to and the night shade veggie and fruits play a role in HS.. It really does So before you go have a surgery try this method

    When bathing use luck warm water and bath in Sulpher bar soap 2 twice daily In the affected areas make a good lather and let sit for a extra 2-3 min after rinsed off dry every part of your body use 99% aloe Vera gel after this helps quite well with pain and and healing of infected area keep nails and finger tips clean.. After every meal take apple cider vinegar tablets this helps to cleanse your system take turmeric twice in morning and twice at night drink plenty of purified water. Try it I know everyone body is different but I can assure you it has helped me... Good luck

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