Bad HS, bad experience with Humira and don't know what to do.

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I am a 28 year old man I have had HS for around 6 years. I am over weight and a smoker. Dermatologist has given me every antibiotic under the sun with no success. First appeared under the left arm at stage 1 and quickly moved to my groin. I had a deroofing surgery on my inner thighs in December of 2015 and it was very successful but it started to appear under my stomach very bad about 8 months ago. Dr gave me Humira and it was awful! Terrible mood swings! Had to go off of it immediately. Saw a "specialist" at Rush hospital this past December this piece of trash told me that I needed to see a psychiatrist because he had never heard of a person getting mood swings from Humira. He gave me minocycline which just made everything worse. I am awaiting an appointment with Mayo clinic in Minnesota for a consultation. Does anyone have a suggestion as to what to do. No I will not quit smoking you have to want to do that and I don't. I try to exercise and loose weight but the excessive sweating seems to aggravate the situation. I have awful night sweats as it is. Thank you in advance.

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  • Posted

    My heart goes out to you! I feel your pain and what you're going through. One thing about this horrible disease is that there is no cure and it's hard to understand and treat. One thing I have learned from dealing with mine is that stress will trigger it on and cause it to get worse.I would suggest for you to find a way to relax. Yes, I know it's not easy and for someone to tell you to relax when you're suffering seems redundant; but yes believe me stress is bad. I hope this was some help.

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  • Posted

    Hi alex, i just joined this discussion, and if you miss my post, try antibacterial wipes in the area that's affected followed by Zo Rub anti-chafing cream ( or something similar, I'm in Australia, maybe there is something different where you are). active ingrediant in the cream is Aluminium clorohydrate 20% w/w. 

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  • Posted

    It's been suggested to me a lot to try the Auto Immune Diet. It's a diet that involves quality meats and vegetables and is based off of Paleo. Main restrictions are night shade foods. One of these types of foods, ingredients, or spices may be an irritant for your body. I suggest googling HS and AIP diet for more info. You say you arent mentally ready for quitting smoking. I completely understand that as I am trying to cut down on vaping. If you want to keep your nicotine, perhaps you could give up a group of foods for 30 days? Just to see if the inflammation recedes.

    It's also been suggested to get into swimming or water sports to have friction-less exercise.

    Find a different specialist and relay every concern you had with your last doctor and meds. No one docotr is the same as the next.

    Best of luck. I am in stage 2 and 3 and struggling to keep 30 days clean on the AIP diet (food is a reward in my life) and considering Humira for me if it doesnt work out.

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  • Posted

    Hi Alex, 

    I have taken Humira for over a year now and I honestly can say that I do have mood swings. Every doctor I have seen has brought up my weight and has told me that because of my weight, I have HS. Some doctors are not as familiar with HS or the medicine they prescribe for HS patients. Don’t let them bother you.. trust me.. I’ve had doctors tell me some pretty rude and hurtful things before.. but they are not supposed to make you feel like your insane. Medicine reacts to everyone differently but personally... I can tell you that it does affect your moods, makes you tired and very annoyed at the littlest things. & steroids are even worse. 

    & for the exercise situation, I can yet again relate to you! Exercising is painful and sometimes nearly impossible. I try to do exercises that are easy and simple to do like stretching, jumping jacks, and laying down and moving my legs in a circular motion. Walking is hard but I try to go to the park and walk as much as my body allows me. I also use Emuaid moisture shower bar to help keep my inflammation down!! I hope this helps! 

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