Hidradenitis Suppurativa

Posted , 7 users are following.

I have recently being diagnosed with HS and my doctor wants me to take antibiotics for 3 months, first of all he has given me a prescription for 6 weeks to see how I get on with the antibiotics.

I am unemployed and on Job Seekers Allowance, the only trouble is, when I do/if find a job, I will have personal hygiene problems, because I cannot wear deodorant as it severely irritates it and as you know the skin condition itself gives off a nasty odour.  What do I do?

0 likes, 14 replies

14 Replies

  • Posted

    Hi ive had hs for 9 years now i did take antibiotics when first diagnosed for 1 month and after i stopped them it came back with a vengeance im not saying this will happen to you im just telling my experience with antibiotics and as for deodrant wise it took me months to find a deodorant that wouldn't cause flare ups but ive been using niva sensitive for a while now and have been fine can i ask what you tried? I know its horrible to have hs but there are small simple things you can do to change the lumps.

    • Posted

      Hi

      I have tried non perfumed deodorant and that stings.  Did you mean Nivea sensitive deodorant, if so I will give it a try.

      Thanks for your help.

  • Posted

    I've had this for about 25 years now it's so not nice and as for deodorant I can't use any as I suffer from it in my groin area might sound strange but if you can try using sudocrem when you get a flare up it does really help as for the job situation I know what you mean I am the same as you on jsa and it's so hard trying to explain to someone that if they giv you the job there may be times that you won't be able to work (yeah they are so going to give you the job ) my current flare up has lasted a year and I'm on antibiotics for the foreseeable future or until the dermatologist decides what to do ask to see them you will have to wait though but hopefully it will be worth the wait good luck and hope it helps 

    • Posted

      Hi

      I am 50 years old and have only been recently diagnosed, I expect the doctor will refer me to a dermatologist, but as I have only recently been diagnosed, I may have to wait a while.  Do you know anything about the different stages, I know there is stage 1 stage 2 and stage 3, but I haven't got a clue what that means.

      Can I also ask what prevents you from working.

      Thanks for your help.

       

    • Posted

      Stage 1 is small but painful lumps

      stage 2 is large puss filled lumps 

      Stage 3 I see all of the above with it tunnelling under the skin all of this info I've got from my doc I'm in my 40s and was finally diagnosed about 4 years ago although I've had it since I was a teenager I get it in my groin area so during a flare up it is really hard to walk sit do anything to be honest I have had them as large as a golf ball on my groin but when you try to explain it to some ppl they just shrug it off and think it can't be as bad as you make it I guess you've had this problem too especially with the job centre ignorance is bliss with them but also another thing to maybe try is femfresh wash I find that helps doesn't sting etc good luck 

  • Posted

    Hopeless antibiotics reduce some of the smell. I'm a stage 3. Have had one surgery need more. Humira helps a lot if you can get on it. For washing myself I use hibicleanse. Helps a good bit. 

  • Posted

    Hello, you may want to try a natural crystal deodorant available at many places.  I also use hibicleanse. Wishing you the best!
  • Posted

    I use baking soda. Put a little water in to make a paste and rub it on gently. 
  • Posted

    I have HS for 10 years.  This has helped me. Just my personal experience. Take it FWIW. My lesion is in one spot and has remained quite small, non-draining, and with no pain using the following regimen for the last year. 

    1. I've taken many different antibiotics with various degrees of success. The one that really made the difference was/is minocycline, 50 mg. twice a day. This is a very low dose and you can be on this low dose for years.

    2. Clobetasol Propionate Ointment 0.05%. Comes in 60 gram tube. This is a low-dose steriod. i put a nice sized dollop in a big band aid and keep the lesion covered for several days. (waterproof bandage). I do this once or twice a week.

    3  I cut out all dairy, simple carbs, yeast products (beer & bread would be 2 examples. This reduced lesion a good deal.

    4. I had this lesion surgically removed 2 years ago. Surgery failed on the main lesion but they were able to remove a sinus tract that has not come back.. My research has led me to CO2 Laser surgery. Much, much lower failure rate. Relatively new, not many Docs around that do it. Have an appointment this Friday, 9/8/17 at the Cleveland clinic in Ohio with just such a Doc. Will keep the forum informed. 

    • Posted

      Thanks for the info, I will take note of what you said, the only trouble is I cannot wear deodorant as it will flare it up.

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