the uncensored version

  • Question: Are you afraid that you will get cancer/TB/etc. from taking Humira? I want to do it but I'm so scared. Also, my derm said I can't do it because the clinical trial won't let people who have acne do it... weird! - persnicketyknickers
  • Answer:

    That is odd.. I don’t know why having acne would prevent you from taking Humira? It has helped my acne TREMENDOUSLY in just 2 weeks. My derm even mentioned that it may help my acne. Maybe that is only for the clinical trial. I’m sure if you were to personally purchase Humira, that wouldn’t be a restriction. As far as cancer, or any other disease.. No, I’m not particularly afraid of getting these. Yes, there is a slight risk. But, with that being said, if you read the warning labels of anything, I’m sure it will say “May cause cancer.” I won’t say I worry a little, because it’s in the back of my head. But, I had to choose whether my fear of getting another disease was strong enough to let the HS consume my life.. And, I just couldn’t live my life wondering “what if”. Humira isn’t for everyone. It’s expensive, the injections are a little painful, and it weakens the immune system. I definitely recommend doing plenty of research & discussing it with your doctor (or multiple doctors).

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So, it’s been a few months since I’ve posted anything && a lot has happened!!

First off, I had surgery!! I had surgery on August 21st, and I am still in the healing process.

So far, it’s been a pretty good success I would say. My right arm is completely healed. I have minimal scaring, and full range of motion..

Now, the left side.. About a month into healing, I developed an abscess next to my surgical wound :( It didn’t last very long, and hasn’t came back.. But, it set the healing process back a bit. My left side is still open in some areas && I have more scar tissue on that side :/

But, on the bright side, I am feeling wonderful. I was released from physical therapy months earlier than they thought I would be. I am regaining some strength in my arms and shoulders. (Still have a very long way to go).

Another big thing that has happened.. I started Humira injections!

I took my first dose 17 days ago. The first dose was 160mg (4 injections). Before my first dose my groin was pretty bad. My thighs were extremely inflamed, and had numerous open wounds, I had sores on the top of my butt crack, the gluteal folds. I also had extremely bad acne. Like, throbbing, aching acne.

I shit you not.. The morning after I took my first round of Humira, I could notice a difference. My legs weren’t as swollen. And it only got better over the next two weeks. Within a week my thighs were drying up & the acne on my face is basically completely gone!!

The day my second round was due, my legs started getting a little inflamed & sore. I took my second dose of 80 mg (2 injections) and the next day the swelling & redness was down again. I truly believe this is working well, and I hope it continues to help.

Yes, it does lower the immune system, and I can tell it does. Each dose I’ve taken, the next day I have a slight cold. But, nothing major. As long as I take my vitamins, and stay awake from those I know are ill, I should be fine.

If anyone is interested to know more about Humira, feel free to ask. I will do my best to answer as much as I can.. I am still learning as I am only on my second dose..

Also, if anyone of you guys have tried Humira or are currently on Humira, please share you experience with me! I would love to hear someone else’s results.

I hope all you guys are doing well & aren’t hurting too much.

 

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Has anyone looked into, or gone through radiation as a treatment for HS?

I have seen some things about radiation about being used as a treatment, and I am very interested. 

If anyone has experience or information, please share!!

Thank you!

  • Question: hello, fellow HS sufferer here, read on one of your post you were having surgery, I've had multiple surgeries over the years, if you ever have any questions about my experiences please don't hesitate to ask - bigtone3000
  • Answer:

    Thank you very much, I appreciate it. Have your surgeries helped you?

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I am STILL waiting to hear back for a surgery date..

I have called the Surgeon’s office multiple times, asking what the status is, and each time they say there has been no update from the insurance..

I don’t know why in the world it would take so long for the insurance to make a decision..

I was told my surgery date would be mid July.. Well, here it is, mid July, and I haven’t even had a Pre Op appointment..

I am getting super restless. I am ready to get the surgeries going.

I had a rough Fourth of July week… I had some new spots appear, and they were very painful. I had to make a middle of the night trip to the ER to get a shot of Dilaudid because the sores on my butt were extremely painful. The poor ER doctor had no idea what the hell HS was.. I had to spell it at least 4 times. He simply told me he didn’t know what to do besides give me a shot of something to knock me out.. I thankfully took it. I slept all of the next day, and most of the day after, and hobbled around the weekend a little, still wasn’t feeling too great.

So far this week, I feel decent. It is extremely hot this week, so I am unable to be outside for very long, or, at all really. 

I took a nasty fall last night :/ I went outside to feed my rabbits, and I stepped in a damn hole.. It turns out that even though I am constantly in pain, and I haven’t moved my armpits much in a year, it hasn’t slowed down my reflexes.. unfortunately.. As I fell, I extended my arm to try to catch me, and HOLY HELL! I literally thought I ripped my armpit in half.. I’m sure the people at the church across the street frowned upon me when they heard the profanity I was yelling.. Oh well, I don’t give a rats ass.

Well, not much else has been going on. I haven’t even logged on to Tumblr lately. 

Hope everyone is doing well.

  • Question: Hello, I also have HS , ive never (so far) gotten it in my underarms, I think ONCE and it went away, I have it currently on the lower part of my body, mostly during my period, Butt is covered in scars, some of my breast, and groin and pelvic area. The things that i've noticed that have helped me is warm tea tree oil,probiotics and Yerba Prima Bentonite, its a detox that rid me of my yeast, ( i think my yeast contributed to my HS) i just thought id let you know, you aren't alone <3 - wingsofthenerds
  • Answer:

    Hello,

    Thank you for the sugggestions. I have used the tea tree oil in a bath before, but my skin had a reaction to it. It made me itch, and it stung! 

    I also think that yeast contributes to HS. I have to take a medication to keep down yeast since I am constantly on antibiotics.. But I cannot remember the name of it for some reason.

    Thank you for the support, and I sincerely hope you do not ever have the HS under the arms. I hope you find something to help with your lower body. In the last three days, I have developed new spots on my butt, butt crack, and more in my lady area :/ These are extremely uncomfortable.

    Again, thank you for the support. :)

  • Question: hey i have hs and only being 13 it sucks because I've had since i was like 10 but i only found out the name this year and I'm sorry u are going through so much pain..but there is a new treatment and its humira I've heard get stories and that it really help. I'm about to start so i can try to keep u updated if you want but i think you should go ask your doctor about it - smileymileyvevo
  • Answer:

    Hello!

    First off, I am SO sorry that you have to deal with this at such a young age. I was 18 when I was diagnosed, and I am now 19, however I’ve had it since I was 17. I atleast got through the majority of high school before having to deal with this.

    I have actually heard about the Humira. I am actually preparing for surgery on both of my armpits right now, so I cannot take Humira or any medicine of that nature until I am healed from surgery.

    I have discussed the biologic medicines for HS, and I have decided that when I can, I will be trying Enbrel. It is similar to Humira, just a few less side effects I believe.

    Thank you for the suggestion, and I will be watching for your updates about the Humira. I hope it helps you tremendously. 

  • Question: Hi. I'm reading through tagged posts and articles and freaking myself out. I have very small, not noticeable small bumps under my armpits and recently this week got one huge one and went to the dr. and he said this term you've been using HS. He prescribed me pills to take for 2 weeks and if it doesn't heal go back in to drain... did yours start with just 1 or did you break out bad at first? I'm scared, I don't really know what to expect. - ever-sosweeet
  • Answer:

    Hello,

    Mine actually started under my breasts (I am a busy girl). I was playing softball, and my bra was rubbing under my breasts.. I was used to getting a heat rash from my bra, but one night, it set me on fire! I was in tears. I grabbed my mom, and rushed to the bathroom to look, and it was the worst heat rash (I thought) I had ever seen. So mine actually started as a very inflamed rash.. However, about a week after the rash, yes, I got abscesses under my breasts. I just got one or two at first. It eventually moved to both breasts, both armpits, my groin, and now my thighs and bottom. 

    Was the doctor you went to a dermatologist? I would for sure go to a derm who has experience with HS. If you can treat it aggressively while it is in Stage I, you might be able to drastically slow the progression down. 

    There are 3 stages of HS. I am in the third. If you scroll through my posts, you will find photos of what my armpits look like right now, in Stage III. They are gruesome, so if you are squeamish, don’t look. 

    I don’t want to scare you, but I would find doctors who have treated quite a bit of HS now, while you are in the early stags. I am going to be honest, the later stages, are painful. I am on two strong narcotics. The pain is just constant. Be aggressive about treating it. Take all of the antibiotics they give you. 

    Also, if there is a treatment you do not feel comfortable about, do not let your doctor bully you into it. It is your body, you choose what you put in it. I was told over and over to try Accutane.. And I just had a feeling that I shouldn’t try it (I still do). There were just too many risks and side effects and not enough results.

    I am sorry you are having to deal with HS. It is a nasty disease. I encourage you to do tons of research on it, that way when you go to the doctor, you are full of knowledge. I have more knowledge about HS than some of the doctors I have gone too.

    If you have any other questions, you can always ask me! I am an open book about my HS. Nothing is too personal. I hope this helps a little.

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It’s been a bit since I’ve logged into Tumblr.. I just needed a break..

Since I’ve been gone… I’ve a had a few good days. But I’ve had bad ones too..

Anyone else know what that gut wrenching feeling is like, when you find a new spot the HS has spread to? Yeah.. Me too.

I now have HS closer to my waistline, on the outside & inside of the labia, the bottom of the butt crack, the back of my thighs, my gluteal fold, and at the top of the butt crack.. 

Sigh..

I could just cry.. Well, I guess I already have a little..

I’m so upset.. The HS is just everywhere.

It is such a helpless feeling to know you have absolutely no control over your own body.. 

I know this sounds childish.. But it just isn’t fair.

It’s not fair for me, or anyone else who has this disease. Or any other disease..

No one should have to suffer like this.. Well, unless you’re a pedophile.. Then you can rot in hell with HS for all I care..

I would sell a kidney to be able to be comfortable again..

I can’t lay, I can’t stand, and now, I can’t sit.. EVERYTHING hurts.

I’m so tired of being in pain.. There are times I wanna go lay in the street and pray someone runs me the hell over, and puts me out of my misery.. 

Ugh..

I guess this is enough whining for today..

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I’ve been feeling quite down lately, but today was great!! My HS was at a minimum today, so I wasn’t too uncomfortable. 

My Mother-In-Law & I drove to the city today to take my niece Chezney to the family water park.

It was much nicer than I expected! I wish I had put on waterproof dressing & wore clothes to get in the water in.

Chezney had a blast & I got to spend a wonderful afternoon with my Mother-In-Law.

After being out & about all day, I am pretty sore, but it was very worth it to have a great afternoon.

Can’t wait to go next week :)

I hope everyone is having a wonderful week as well!