Has anyone tried Humira to treat HS?

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I'm in stage three of HS and my dermatologist has suggested Humira.  We've tried A LOT of other things already like diet and antibiotics but I have had no success.  From what I've read, it's a new treatment for HS.   Has anyone tried this yet?  Humira is used for other autoimmune disorders like Crohns Disease.   The side effects seem pretty harsh but at this point I'm pretty much willing to try anything. 

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  • Posted

    It's not a new treatment for HS because my dermatologist suggested it as a last resort about 3 years ago. It IS new that doctors are starting to agree that HS is an autoimmune disease. Thankfully, I didn't try Humira after finding remission by cutting out foods that trigger my HS: nightshades, coconut and peanuts. Humira made my cousin with chrones have many seizures and she is now in bad shape. My dermatologist did try me on an autoimmune suppressing drug that wasn't as harsh but it didn't help my HS.

    Please read about food sensitivities and HS and autoimmune diseases. Try an elimination diet to find your triggers. It's hard to cut out foods that you love but it's worth it not to suffer anymore!

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    • Posted

      Dear crystal 08850, 

      I was just  diagnosed with HS and some people in my country just started Humira. My doctor (dermatologist) suggested i consider starting using Humira, but I read all the side affects and I'm really scared. 

      Your post made me think because years ago I went to an alternative medicine doctor (homeopat) and she told me that I have food sensitivities. Please, could you post some links to articles about food sensitivities and HS and autoimmune diseases?! I'm proficient in english, so that won't be a problem. Thanks"

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    • Posted

      No, unfortunately, this website removes links that anyone posts. But you can find some information online I read about it on here first when a lady wrote about it but then found more on the Internet. Did the doctor tell you what sensitivities you have?

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    • Posted

      No, unfortunately she didn't. I found that there are lost of food sensitivities tests, but I'm not sure how accurate or reliable they are. I'm gonna try with excluding nightshades, coconut, peanuts and alcohol from my diet for 30 days and see what happens. I'm also a smoker, so I have to find the strenght to quit.. That's going to be the hardest, but I don't see any other way. Also, I bought a book on paleo diet yesterday and I'm generally starting to read a lot about autoimmune disease and diet. I'll keep posting, it's important that we all share our experiences.  
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  • Posted

    I'm just waiting for the funding approval to come through for Humira.

    After 13 years of trying every medication, every diet and having countless operations, I was given funding for infliximab infusions. The first 12 months on it were an absolute dream, I couldn't believe it! But then it stopped working and my HS came back with a vengeance, along with side effects (rapid weight gain, lethargy, psoriasis to name a few).

    I'm under the United Lincolnshire Hospitals Trust, and after exhausting all avenues available to them they referred me to Dr Desai at the St Johns Institute of Dermatology (Guys Hospital). She recommended Humira, which pleased my dermatologist at Lincoln. He believes this recommendation will help me receive funding.

    I have read about the side effects, but at this point I'm thinking they can't possibly be worse than what I'm going through now!

    I think every treatment for HS is a gamble because so little is known about it, and all any of us can do is weigh up the pros and cons of each treatment option. I'm just hoping that one will work at some point and I'll be able to return to work!! X

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  • Posted

    Humira was on my list of things to try before I identified nightshades as my trigger like Crystal did. If diet hadn't worked for me, Humira would've been my next step. I was in stage 3 like you are and I know how bad it is.

    As far as side effects go, as long as you are aware of what side effects to look out for once you start taking it, and you believe the possible benefits outweigh the possible risks, (in my opinion they do, especially if nothing else you've tried has worked), then go for it. Just keep in mind that Humira works by supressing the immune system, so you will be more vulnerable to infections and less able to fight them off. I'd ask your doctor what measures you should take in case you get sick. In cases of bacterial infection, having a supply of antibiotics on hand certainly wouldn't hurt, and instructions as to how to handle viral infections would be good as well. Also, make sure you wear a mask any time you have to go to a doctor's office or a hospital.

    One other thing you should consider is that there is little to no information about what long-term useage of biologics, such as Humira, can do. There is some concern that long-term suppression of the immune system can result in a progressively deteriorating and/or a permanently weakened immune system. So please keep that in mind when you make your decision.

    It sounds like you've already done some research into Humira, but make sure you talk to your doctor about all possible side-effects so you know what to look out for. I'm so sorry that nothing else has worked, and I wish you the best of luck!

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    • Posted

      I was so encouraged by your letter that I had to write to thank you for words I needed to hear.  I have been so hopeless concerning this condition, admonishing myself for not being courageous enough to just take an Exact-o knife and lancing my own lesions/boils/carbuncle (whatever they are called..  My first lance was done 43 years ago and each year the condition has gotten worse. Now I am clear of an outbreak only a couple of weeks a year. So even if this doesn't work forever it will probably give me a well deserved respite.  Maybe I will be able to shave under my arms again, go sleeveless again. wear deodorant  again and not worry about underarm odor or the type of soap I use to bathe/shower with. I am awaiting approval by my insurance but feel certain they will cover me.  Words of encouragement like yours and another friend have helped me seek treatment and perhaps relief.

       

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  • Posted

    Hi there,

    I've had HS for over 20 years now. It started in my twenties, with painful lumps that grew as big as tangerines under my arms. I lived with it without getting treatment and for some reason, it went away for about 15 years.

    Then came back with a vengance. I was presecribed various antibiotics. The one that worked best for me was minocycline. But after a year, the lumps started coming back. Worse, they started turning into open sores, and began oozing connective tissue along with the other stuff.

    I managed to get Humira covered by my insurance. I'm in the US, so I got lucky. My dermatologist said I was the first person who managed to do so. Just last week, Humira was approved by the FDA for HS, so hopefully this will change.

    Anyway, I've been on Humira for about three months and it's working. The connective tissue receded. My one persistent open sore (about the size of a half-dime, been there since May) closed, but recently reopened. I think this was do to some over activity on my part. Anyway, connective tissue isn't exploding out of it like in the past.

    I'm not sure what your HS is like, but mine always starts out with a fairly tiny, deep, painful bump. From there, it would swell and grow, quite a bit. Then, the swollen abscesses either break open or go away internally somehow. The whole process was about two to three weeks.

    Well, the Humira doesn't stop those tiny bumps. But, they haven't grown from there. For example, just yesterday I felt one of these bumps beginning, but a day later, it's as good as gone. Also, I had hardened tissue from old wounds (tracts), but these have softened and I can finally stretch my arms out without pain. It's been about two years since I could do that.

    I've had no side effects from the Humira at all. In fact, it's helped with an achy knee I developed from fencing (a sweaty sport I had to stop, probably one of the reasons my HS came back). Also, I've had moderate acne since my teens. While it hasn't gotten rid of the smaller bumps, I used to get fairly huge ones, and the Humira seems to have stopped that as well.

    I've never tried restricting my diet. Honestly I'm kind of skeptical that it would do anything. Personally, I think Humira is a better option than long term antibiotics.

    People respond to drugs differently though. If what you've tried doesn't work, I'd recommend you give Humira a shot. Speaking of which, the pens can sting a little, the worst one for me so far hurt about as much as a bee sting and the best shot I gave my self I could hardly feel. In any case, the pain is nothing compared my worst HS outbreaks, and it goes away after a few seconds.

    Best of luck. This is a horrible condition to live with and I hope you find something that works for you!

     

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  • Posted

    I'm currently useing this medicine. They say it's a slow working med because I don't see any changes in my skin. I take it for my rheumatory arthritis but my dermatologist said it should help out with my HS
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  • Posted

    I am in stage two and have been sitting at stage two since i found out what I have almost 10 years ago.  I have been getting surgery after surgery after clyndamyacin dose after dose and nothing helped, not diet, weight loss, lifestyle change, NOTHING, and I was finding myself getting depressed and "fat" because I was ashamed to go in public.  And being in high school at the time, it killed me.  I almost flunked out because I was so ashamed to go.  Then about four months ago my surgeon suggested I go see my dermatologist who immediately jumped on my case and suggested we start researching humira.  I was VERY reluctant at first, I mean giving myself shots, once a week, no thank you!  But girl, let me tell you, i have NEVER been happier in a decision.  My life has changed forever.  I am not the kind of person to push drug peddling power corporations, especially when it comes to pumping my body full of chemicals and drugs, but this has helped beyong what I ever imagined.  I can shave, eat whatever I want, live however I want, and it is amazing.  Once a week you feel a small pinch in your leg or tummy for 10 seconds and then a week or relief.  I am swimming in public, have a healthy relationship with a man who understands and supports me. And the therapy is moderatly priced with a good insurance plan and help from the doctors.  Not only that, their "ambassador" program offers nurses on call 24/7 to help you along the process, teach you what you need to know, and is dedicated to you.  I love Humira and I highly suggest it to all HS patients who are losing hope or just starting their battle.  The start up process is gruelling, but worth it once you start seeing results.  I started seeing results after my third dose!  Give it a try, have faith and know that no matter what, WE ARE ALL BEAUTIFUL AND STRONG just for living in this special kind of hell.  
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    • Posted

      Hello calli,

      I hope u r better then before. Wanna just know till when u should take Humira? I'm a from Germany and it costs too much and insurance do to pay so just wanna know how it work and for how many times.

      Beat regards

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    • Posted

      Thank you for this feedback!. I've had severe HS for over 20 years. Several major surgeries! My insurance company just approved Humira. Although I fear injecting myself it can't be any worse than the monthly steroid injections in my groin, labia and inter thigh. Not to mention the constant lancing to drain cyst! I'm looking forward to taking Humira.
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  • Posted

    Are you still on Humira. I am going through all the testing and really scared to take it with all the side effects. How is your HS now? Thanks
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  • Posted

    Hi

    Myself and my husband both suffer with HS. I am at stage 2 where my husband is at stage 3 possible stage 4. My hubby started humera after all medications failed in the past and we have noticed improvements already. This is the last chance for my husband and we have been told he could be on this for life. At moment my husband has lesions all over his face his back and groin and bum area.

    Humera has only been approved since September in the UK and only when no other option is available. We have gone through all the side effects with medical advice and we was told at least my husband would have a life and to be honest estate he does now. Before he wouldn't leave the house and even sitting was to painful. We on week 6 of humera and no new lesions have appeared and the lesion he has had reduced to half the size.

    My advice is to go for it but depends on how bad ur Hs is. I wouldn't wish this disease on anybody and I know myself how painful these lesions can be and have seen the effects of them. It's all down to yourself to make a decision on what's best for you if you have any concerns speak to your doctor ours was amazing x

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