1. Community
  2. Skin and nails
  3. Hidradenitis Suppurativa

Advocating to Kaiser Healthcare

Posted , 5 users are following.

mara08428
mara08428

My daughter has been suffering from HS for over two years. Dermatologist at Kaiser gave very conflicting treatment plan.  I am worried for her. She is young. I have read that surgery has over 90% successful with healthy lifestyle. I also read that do the surgery sooner than later. I am going in again tomorrow w my daughter. Please pray for her.

0 likes, 20 replies

20 Replies

Next
  • sandra20566
    sandra20566 mara08428

    Posted

    Hi Mara08428, my heart and prayers go out for. Hang in there your going to be fine, I know it's hard but keep the faith.

  • nikki_13893
    nikki_13893 mara08428

    Posted

    I will keep your family in my prayers.  I have had surgery done under my armpits. A plastic surgeon performed the procedure. It’s about to be a year now and it was well worth it. In October I’m planning on having surgery again regarding the HS under my breast.  I’m nervous and excited. You and your daughter should really give surgery some thought. It was worth it for me. 
    • mara08428
      mara08428 nikki_13893

      Posted

      God bless you.  Can you share the ball park cost of surgery. 
    • nikki_13893
      nikki_13893 mara08428

      Posted

      I’m not sure. My insurance covered almost the whole thing. What was left I got billed for later. 

  • Chitra.M
    Chitra.M mara08428

    Posted

    Good luck! May everything work out well for your child.

    Not to discourage you... I got relapses and HS in new sites, post surgery. I dealt with HS for 15 yrs. I'm now in remission. Classical Homeopathy treatment was the game changer for me.

    I have heard of people who have gone on the AIP diet and achieved fill remission. Just thought of sharing.

    Stay blessed!

    • mara08428
      mara08428 Chitra.M

      Posted

      Thank you. I pray that everyone with HS will be healed. How long have you been in remission? Do you have a homeopathy doctor you recommend in USA?
    • Chitra.M
      Chitra.M mara08428

      Posted

      Yes, I hope so too! I have been in remission for about a year now.

      I was on homeopathic treatment for 5yrs, prior to the remission. So no surgeries, pain meds, antibiotics, steroid shots etc. in those 5 yrs. Were tough years, but worth all the effort.

      Currently, at times I have very mild inflammation or some discharge, when faced with triggers. But my quality of life doesn't suffer. Very rarely I need a maintenance dose. In general, things settle on their own.

      I live in Dubai and my home country is India. I used to typically have very painful and big flares, especially during summers. My skin clearly reacts very differently now.. a more normal/healthier reaction.

      I have posted my storylife in a thread on the forum. Check it out, if you would like. I don't know of a classical Homeopath in the US, but chances are my doctor might. She is part of some global homeopathy group. If you would like, can check with her. Else, check for 'classical homeopathy' or 'classical homeopath'

    • Chitra.M
      Chitra.M mara08428

      Posted

      And yes, a healthy lifestyle helps for. sure. I'm vegetarian and do loads of organic foods. Although diet didn't impact my HS much, I still stick to limited dairy and, gluten to keep the inflamatory tendency under check.

      Mindfulness meditation and other relaxation techniques have played a part in my healing too. Small pieces of the jigsaw puzzle that got me better. Homeopathy, was the primary reason...

      Hope this helps. Good luck to your baby girl and you. Take care.

    • mara08428
      mara08428 Chitra.M

      Posted

      Chitra

      My sisters name is also Chitra. I would appreciate any referral from your doctor. I am near San Francisco, California. God bless

      M

    • Chitra.M
      Chitra.M mara08428

      Posted

      Interesting.. smile Thanks for your msg.

      Let me check with my dr & get back. Will send you a personal msg. Plz drop me a line if you receive it! Sometimes the personal msgs I send don't go through. Jst want to know if you are receiving them.

  • sandra20566
    sandra20566 mara08428

    Posted

    Good morning Msra08428, no I'm not in remission yet but I think it is trying too. I tried a medication a while back and it was wonderful, but I had a bad reaction to it. It effects my eyes,so they took me off of it. But had that not happen this medicine was great. It put me into remission fast, it is called Humira. It is done by weekly injections. I've had HS now for about four or five years. I recently had three surgery's, all I can say is I'm trying, and that's what I want you to do. Hold on.

    • mara08428
      mara08428 sandra20566

      Posted

      Hi Sandra

      Humira is one of the treatment the doctor called me about this week to try. I am taking my daughter in today.  I am concerned about the side effects as you have mentioned.  College starts next month and it will be difficult for me to assess her condition.  My best wishes for your healing.

      M

    • sandra20566
      sandra20566 mara08428

      Posted

      Hi mara08428

      I tried Humira first time back in 2016, it was working but as I'm sure you heard about the side effects. Well I was getting injections in my thighs every week, it finally kicked in but I noticed my eyes getting very very red. I brought it to my dermatologist attention but he thought nothing of as being related to the medicine. Anyway I started having flairs again stopped the Humira and got surgery. Feb of 2017, again Feb 2018 and plastic surgery Sept 2018. Then both general surgeon and plastic surgeon suggest I go back to dermatologist and try Humira again. So I did and wouldn't you know red eyes came back, this time my dermatologist said wait there is something on the internet about Humira and eyes. Well came back in the office and said I could no longer have the medicine. Seems the maker Abbott pharmaceuticals did not add the side efyon the eyes. It is online a woman lost her eye sight and won a large lawsuit. Humira gives you company nurses that follows up with you monthly by calling you. When I told them about the Humira they still said it was not listed as a side effect. Well it is on the internet, and I don't take it anymore. As of today the redness cleared but I am experiencing blurred vision. Not to fighten you everyone is different but be aware, if you notice anything wrong stop the medicine. Some call Humira poison which I have seen online. Do get me wrong if it hadn't messed with my eyes I would probably still be on it because it did put it in remission. Also do not try Acutain it gave me suicidal thoughts. So just be careful it seems to be trial and error. And we are guinea pigs, which I don't like. Just do your homework and pay attention to what ever you choose. Good luck one more thing i.m doing natural things as well as Tylenol with codeine, Tamuric and Cumin in my food I'm on vitamin B building up my Immune system. Using a product called boil ease. I am trying a few homeopathic product as hours can see. Again good luck. And ask a lot of questions, and pay attention to side effects even if not listed.👍

    • catherine_72627
      catherine_72627 sandra20566

      Posted

      i wanted to try humira after seeing it on tv ! i live in canada .. My doctor never agreed to it , for her if its not antibiotics it wasnt good . Also she hated when i came up with something from tv or internet 
    • mara08428
      mara08428 catherine_72627

      Posted

      Sorry to hear that. I find most doctors have become like robots. There is no urgency - feel like we are guinea pigs, let us try this and that. Only a wounded healer can heal.  I am reading up as much as I can and I am going to challenge them to step up and show up . God bless
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.