HUMIRA TRY IT!
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
aussie76 jodi55
Posted
With an average affliction period of 20 years its s long time to wait for it to 'burn out'.
jodi55 aussie76
Posted
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!" 🙄
mittens93 jodi55
Posted
jodi55 mittens93
Posted
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!
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mittens93 jodi55
Posted
tammyjo311 jodi55
Posted
jodi55 tammyjo311
Posted
matt03271 jodi55
Posted
jodi55 matt03271
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!
sandrarobinson jodi55
Posted
jodi55 sandrarobinson
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!
Jodi
keylimepie jodi55
Posted