Posted , 9 users are following.

Good Evening Guys!

I can tell you my story but I'm pretty sure you all already know it. I'm sure there are some differences, but we're all pretty much in the same boat. HS ( I refer to it as my Horrible S#%&!) is just that: extremely painful, debilitating, & mutilating.

Cutting out nightshades, creams, antibiotics, tea tree oil, different deodorant, turmeric, zinc, Accutane, Vitamin D, blah, blah, blah... all help but absolutely none of any combination of any of it really prevented or curtailed breakouts for me for any length of time. I've been to all kinds of Drs. I had one dermatologist tell me "it will burn itself out." Oh, my head spun around! I'm pretty sure I spit green peas! I don't understand why more Dr's aren't educating themselves. It's such an embarrassing disease to begin with & then to have Dr's belittle, discount, & or disparage a patient absolutely does NOT work for me. It was in that moment I came to a realization. I was going to find someone who would actually help me.

So... I set out on a mission. If there wasn't a cure, I was hell bent on the closest thing to one I could find. I've spent many long hours researching on my own & was more than willing to be a Guinea Pig to any doctor willing to actually try.

Needless to say, I found one.

Here's my experience as short & sweet as possible. If anyone has questions, please don't hesitate! I am more than happy to share & truly hope it helps & or encourages everyone of you guys!

Nobody knows for certain was causes HS. "They" do say it's an Autoimmune disease. I, personally think in my case, there's other factors in combination, like hormones.

The dermatologist I found did the trials & studies for FDA approval of Humira for HS.

Humira was not approved when I started.

I completely spun after reading the ridiculous possible side effects. But in the end, decided the quality of life with HS wasn't any worse than any of the side effects listed.

Within 2 weeks I noticed a huge difference! No breakouts.

Within a month I really started testing the boundaries & put on a pair of jeans. Wore them an entire 12 hours. No breakouts!

Ate potatoes. A lot! Within 2 days, I could feel one coming on. Took a shot. It went away!

On & on.

I have now been on Humira for a little over a year & I have gone from golf ball size tunneling sonsabeetches, wanted to die if I moved, at least every 3 to 4 week breakouts to 2 tiny never fully surfaced breakouts in the past 14 months.

HUMIRA is the closest thing to a "cure" that I've found & the best part is, I have my life back!

I do still try to watch the nightshades, but I eat them pretty regularly honestly like 6-7 times a week. I don't wear underwire. (I haven't tried) Probably should. I also have not gone back to stick or roll deodorant. I use Secret spray. It works for me & it's not an inconvenience, so haven't bothered.

I take a Humira shot once every 2-3 weeks, but will take one if I feel the least bit leary of lesion coming on.

Humira has now be approved by the FDA for once a week treatment for HS, if needed.

To be completely honest, there are 2 negatives to taking Humira. The shot is 10 seconds of pure fire. The needle is tiny, it's the actual meds that sting & sometimes I get tired the next day after taking. Both of which I choose, no doubt over NOT taking Hurmira! I encourage you all to find a Dr who is concerned & serious about treating & preventing HS. Nobody should have to endure this Horrible S*#%!

2 likes, 13 replies

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13 Replies

  • Posted

    That is fantastic Jodi! How great is it to get the symptoms under control. My family has a history of arthritis and im not suprised there must be similar root cause. One i think they're getting closer to.

    With an average affliction period of 20 years its s long time to wait for it to 'burn out'.

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    • Posted

      From what I understand, in layman's terms, all autoimmune diseases (i.e. arthritis, thyroid, etc) involve the body attacking itself in some form. When that occurs, the tissue/cells become inflamed. This is were the "connection" comes into play. Whatever it is, it's working!

      YES! I'm sure like anyone with HS, I was tired & so frustrated! My HS had progressed to the point where I knew what lie closely ahead for me. I didn't like the surgery option at all & had seen pictures in the research I was doing. I wanted another option. Any other option & to have a Dr tell me pretty much to suck in up & just deal, flat out made me mad. I'm pretty sure my response mentioned something like shoving golf balls and marbles under her skin under her arms, between her legs & tender places & see how productive her daily life becomes & then come talk to me about just "letting it ride!" 🙄

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  • Posted

    Hi Jodi, I am so happy you had some success with your journey. It sounds like your case is very similar to my own. I've been dealing with HS for at least 10yrs, but it seems like within the last two years it has come with vengence. I've have been given cortisone shots, put on antibiotics, and even had them drained. It seems like when I have my period that's when it's at it's worst. Two thngs that has happen to me in the last two years; I came off my IUD and they diagnosed me with diabetes and put me on Metformin. At one point, between the Clymacidin and Metformin, it seem to be working. I was trying to eat healthy and drinking plenty of water, but evently it came back to level it was before, horrible. I, myself, am looking for anything close to a cure and saw your post. My primary doctor wants to send me to a plastic surgery for remove my glands, infected, tissue and reconstruct my areas (both armpits and groin) but it's alot of money that I just don't have. Where the Humira shots expensive? I have BCBS state health insurance. I am so tired of this condition! It has taken so much from of my life. I just want to have some relief and normalcy for a change sad
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    • Posted

      My heart goes out to you! I, too have BCBS with Caremark for RX. My RX plan is tiered & of course Humira is at the most expense tier. However, manufacturer has a discount program. So with insurance & then the discount through Humira, I pay 5$ & some change a month.

      I would also think insurance would cover the reconstructive surgery as it's certainly not "elective." I'm no way qualified to give medical advise & you and your Dr will have to decide what's best for you. I would say, do your research, be sure you are seeing a Dr who is extremely knowledgable about HS & stays current on HS treatments. Be vigilant about keeping any infections under control as it just snowballs, take of yourself. Nobody can "fight" for your health like you can. Speak up & tell Dr's your thoughts.

      If you do start Humira, you'll take 2-3 shots starting out. You will be tired for a day or 2 after taking. The shots hurt, no lie.

      I focus on the alternative when taking them. I give them to myself in the upper leg. I take the pen out of fridge 30-45 mins before, ice the area for a minute or 2 before, turn on the TV to something funny, swab my leg, click the pen, & count to 10.

      I'd love to hear updates on your journey. Best of luck to you!

      Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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    • Posted

      Hey Jodi55, thank you so much for this info! This has lifted my spirits some. It's actually given me some hope for ending or at least managing this debilitating disease. Thank you so much! smile
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  • Posted

    super stoked to hear this...right now she has me on antibiotcs but were moving towards Humira or Remicaid..I would rather administer myself then have to go in infusions!!..thank you thank you for the great news!..i bless and am thankful for anyone who gets relief from this, the nightshades are working right now for me, but if i step out of line just alil and bam, i can feel it starting,...that good ole internal itch...ugh
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    • Posted

      That is fantastic! I replied to 1mittens93 with a discount link on Humira & my "tips" for taking the injection. Keep us posted on your journey! I truly hope "these" medications allows everyone suffering with HS to return to "normal" life!
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  • Posted

    This is awesome jodi! I am a college student and have been dealing with HS since middle school. It has set me back alot! and recently has been bitting me in the a$$!! I was wondering if Humira is really worth it because my dermatolgist and I have taken the blood work and are putting in the works for it. Do you highly recommend that this is a good idea?
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    • Posted


      Humira has been my miracle! I absolutely recommend! My scars have even started fading. Manufacturer has a discount program where Humira should cost you around 5$ a month. Be sure to watch the nightshades in your diet. Russet potatoes still try & cause havoc & red potatoes don't. I have no idea why. The shots suck, but are SO worth it! Well wishes & would love to hear about your success!

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  • Posted

    Congrats on feeling better and the meds working for you. I too have HS since 2004 and it does take over my life. I have prepped and getting the paper work done for the Humira. I am terrified of the side effects as I am very high risk of cancer on both sides of family. I was told that the needles not the pre filled pen were less painful and didn't burn like the pen did. I also heard that you can gain slot of weight on Humira and as you know I'm sure HS does not like weight I have just lost 55 pounds and don't want to gain them back as I was diabetic and high colesterol and no longer need diabetic injections or pills or high colosterol meds either. Have you had any side effects or weight gain? Thanks
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    • Posted


      It took me 3 days to "talk" myself into injecting myself for the first time. Cancer is a high risk in my family as well. 3 of my 4 grandparents passed from cancer, one was from Lukemia & I am a melenomia survivor. Absoluetly YES! I was terrified! In the end, I decided, death will find me one day. Living with HS was completely hendering my quality of life & I'd rather have quality than quantity & although the risk for cancer, bleeding from every orriface, & every other horrendous side effect is listed as possibility with taking the drug, my HS was not something I wanted anymore. I literally waited for the other shoe to drop for the first 4 months or so. I have not gained any weight. I've actually lost weight because I'm able to exercise & not tied down with breakouts anymore. My body makes bad cholesterol so I have to watch it closely. I've learned not to eat shrimp within a week of a blood test. Accutane was when I started taking cholesterol meds. My cholesterol balanced out about 6 months after I stopped Accutane. So far, so good on Humira. Fingers crossed! I have no regrets & if I end up on cholesterol meds again, I'll take that over HS any day. It's different for everybody & only you know what's best for you. Well wishes!


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