Help support something anything needed

Posted , 5 users are following.

Hi. Im 35 years old i have suffered hs for over 20 years. I have had over 50 surgeries and developed allergies to most antibiodics. Ive never posted on a forum in my life but today i am at a total loss! I am at the start of a terrible flair up and just dont know what to do anymore! No body seems to understand this horrible disease! Although in agony with every step causing excruciating pain i still go to work and do as much as i possibly can with my kids but geez today its got me down. The drs are trying to getme humira has anyone got recent experience with this? Is there a light at the end of the tunnel?

0 likes, 5 replies

Report / Delete

5 Replies

  • Posted

    Oh bella49969. - you poor thing! This sounds absolutely horrendous!! I can only imagine what you have been through and what you are going through now.

    i too have had this for around the same amount of time, but my case seems a little bit milder than yours.  It has still made life pretty miserable at times.

    the thing with HS is that what works seems to vary from person to person, as I am sure you are aware.  I too tried clyndamycin, lymacycline, ruaccutane, and every other sort of anti biotic pill, potion and lotion available.

    some people say to avoid eating anything in the nightshade family of veg, others say cutting refined sugar and white flour out of your diet is sometimes effective.  I have also heard of several other things that you might find helpful - and I've recently had a bit of a success with something else I'll tell you about in a moment.

    turmeric, which is high in curcumin, about a teaspoon in hot water and made into tea is supposed to be helpful.  but  it doesn't taste great. Bathing the affected area with a solution of organic apple cider vinegar with the mother (that's important ) may initially sting s little but helps with relieving some of the swelling and drying the boils out s bit.

    the thing that has really helped me is that I have been having s nutribullet drink of spinach, berries, a little banana, a little bit of apple and into this have been mixing chia seeds and hemp or flax seed ( you can buy it milled)

    now I have been doing this for over s month but the HS has gotten so much better.  I haven't had any more beaks outs and the tunnelling under the skin is softening and starting to go away.  I spoke to a nutritionist friend of mine and She thinks that the omega 3 in the chia, hemp and flax seed is having a good effect.  Please try it. Post to the forum again if you have any questions.  You have to have at least once a day, every day, a good heaped tablespoon in the juice of each.  You can get chia seeds, shelled hemp seeds and flaxseed in most good health food stores.

    i really hope things get better for you. Xx


    Report / Delete Reply
    • Posted

      Hi rebecca06431 thank you so much for your reply.

      I too over the last 5 months have done the diet changes after ridiculous amounts of atudy on the topic. I cut out nightshades as i know potatoes are definitely a trigger for me. And let me say i could kill for a potato. And have now discovered potato starch is a key ingredient in a lot of foods. So have cut them all out too.

      I have done the tumeric thing also but ddnt see much change.

      Apple cider vinegar is something i have never tried...but im off to the shops now to buy some. I have also recently started on the shakes. In all over the last few months i have been so much healthier with the change of diet but this flare up has me really down. My children are upset because i always spend so much time in hospital and i am desperately trying to stay out of hospital for a few months more atleast.

      Again thank you for your repky and support and auggestions i hope you continue to improve and i will try your new suggestions out. Lol sorry for the lobg dribbling too. Wishing you all the best!

      Report / Delete Reply
  • Posted

    Hi I started Humira three months ago. I was able to take it until my insurance changed which was 2 months. The Humira didn't take away the the HS lesions I alredy had. It did take away the HS smell. It also slowed down the amount pf new sites from the norm.Now that I am off the Humira it is the worst ever.
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up