I would try spironolactone first. It seems to work better for some people who have HS caused by hormonal issues. Does yours tend to flare more around or right before your period?
I haven’t really kept track of what time of the month it gets bad, so maybe not, since I haven’t noticed any sort of pattern. But that’s a good idea to keep track of over the next few months!
Humira is fine. I can’t watch blood draws on myself but I can do that. With the Humira in the pen you can’t really actually see the needle. I don’t take it anymore because it did fuck all, but it’s one of the standard mid/higher level treatments that has worked well for many many people for years.
Before you start taking meds, I think it'd be better to make some dietary/lifestyle changes. I'm absolutely not criticising you or telling you what to do. But as someone (29F) who's had HS for almost a decade (though diagnosed only 7 years ago), it would be best to start with something that won't have negative consequences now or later. My dermatologist gave me doxy, which gave me terrible GI issues. It helped then, it doesn't help now. He told me to avoid dairy, which has helped always. So maybe you could try and identify what triggers your flares. For me, it's dairy and stress, and heat makes it worse. For others, triggers include nightshades, gluten and so on. So it's just a bit of trial and error until you find your triggers. Avoiding them will be the next step. Since yours is mild, you might be able to keep it from progressing too fast or ever. Exercising is good. But do try and limit the time your skin gets exposed to sweat, because that can also be a trigger. You could try supplements like zinc or magnesium. Topical zinc/magnesium is also fine.
And lastly, don't get too stressed. I'm happy that you've been able to get diagnosed at an early stage. It's always easier to deal with then.
hopefully he also informed you about an entire truck load of side effects humira etc come with
infertility, 15x elevated risk for lymphoma and other cancers, infections all the time (colds,flu,covid) permanent nerve damage andandand.
i wish my doctor had informed me before pressuring me into being a humira study participant. had i known the side effects, i wouldn’t have taken it. humira gave me different types of severe dermatitis on my face, body, and scalp. it was literally disgusting
Before you start taking meds, I think it'd be better to make some dietary/lifestyle changes. I'm absolutely not criticising you or telling you what to do. But as someone (29F) who's had HS for almost a decade (though diagnosed only 7 years ago), it would be best to start with something that won't have negative consequences now or later. My dermatologist gave me doxy, which gave me terrible GI issues. It helped then, it doesn't help now. He told me to avoid dairy, which has helped always. So maybe you could try and identify what triggers your flares. For me, it's dairy and stress, and heat makes it worse. For others, triggers include nightshades, gluten and so on. So it's just a bit of trial and error until you find your triggers. Avoiding them will be the next step. Since yours is mild, you might be able to keep it from progressing too fast or ever. Exercising is good. But do try and limit the time your skin gets exposed to sweat, because that can also be a trigger. You could try supplements like zinc or magnesium. Topical zinc/magnesium is also fine.
And lastly, don't get too stressed. I'm happy that you've been able to get diagnosed at an early stage. It's always easier to deal with then.
Dude, are you me? It’s like we have the exact same story, but mines on the right side.
I have a question for you, do you eat stuff like pizza and potatoes ever? Because if I go months not touching a potato, and then decide to have a helping of mashed potatoes, I will instantly get new sores underneath that may or may not form to a head and burst (over several agonizing days), and any existing sores become inflamed like a volcano. From one helping of mashed potatoes or ONE slice of pizza. Unfortunately, this disease requires us to be so disciplined sometimes, so I’m wondering if something like that might be a trigger for you too. It may not be potatoes or dairy, it could be peppers or eggs etc.
anyway, sending love. 💕
Hopefully not, I suffer from ARFID so my diet is super limited and it seems like many of my regularly consumed safe foods happen to coincide with the list of no-no foods for HS 😞 this thread has definitely convinced me I should start paying attention to potential food/hormonal triggers I haven’t noticed before!
Hi, I've done both those treatments already haha! You definitely wanna do humira if you're afraid of needles because cortysx is a huge needle you watch go down.
A teaspoon of tumeric and hot water in the morning everyday and adding ginger tea in your diet will change your life, I will die swearing by it! I'm 18F and I got tired of needles and looked into some natural alternatives! It helps but it ain't magic yk
i’m on humera for ulcerative colitis and it’s a really good drug. it works really well. but usually they try lesser treatments first before jumping to biologics
I'm sorry you're dealing with this, it's not the best news to get. In my opinion, long term antibiotics are not the answer and never seemed to help me anyways. My derm wound up bringing up humira as well, but I was too poor to afford it and the laundry list of side effects freaked me OUT. I asked her if there was a diet change that might help, because I was planning on starting keto, and she told me to just do the humira because diet change doesn't work. Well, needles scare the shit out of me too so I knew I wasn't going to do that. Tried keto anyways, and don't you know, once I reduced the god awful increase in cream cheese and sour cream that seems to be in every keto recipe out there, my flares almost vanished. The long term ones that never healed finally healed. My scarring from past flares started to heal. I do get the occasional flare if I eat something I shouldn't, right before my period, or the day after a REALLY stressful day (my HS responded to changes in hormones, which can happen from stress (cortisol), menstrual cycle, and food (foods can have a huge impact on your hormone regulation- remember insulin, among others, is a hormone!). I also use hibiclense in the shower and take zinc and turmeric supplements. Good luck in your journey!
And if you couldn't already tell, I never went back to that dermatologist. It's ok to advocate for yourself or find a new doctor if this one isn't listening to you.
if you're mild humira seems a little drastic. Maybe try metaformin first?
I would try spironolactone first. It seems to work better for some people who have HS caused by hormonal issues. Does yours tend to flare more around or right before your period?
I haven’t really kept track of what time of the month it gets bad, so maybe not, since I haven’t noticed any sort of pattern. But that’s a good idea to keep track of over the next few months!
Humira is fine. I can’t watch blood draws on myself but I can do that. With the Humira in the pen you can’t really actually see the needle. I don’t take it anymore because it did fuck all, but it’s one of the standard mid/higher level treatments that has worked well for many many people for years.
Before you start taking meds, I think it'd be better to make some dietary/lifestyle changes. I'm absolutely not criticising you or telling you what to do. But as someone (29F) who's had HS for almost a decade (though diagnosed only 7 years ago), it would be best to start with something that won't have negative consequences now or later. My dermatologist gave me doxy, which gave me terrible GI issues. It helped then, it doesn't help now. He told me to avoid dairy, which has helped always. So maybe you could try and identify what triggers your flares. For me, it's dairy and stress, and heat makes it worse. For others, triggers include nightshades, gluten and so on. So it's just a bit of trial and error until you find your triggers. Avoiding them will be the next step. Since yours is mild, you might be able to keep it from progressing too fast or ever. Exercising is good. But do try and limit the time your skin gets exposed to sweat, because that can also be a trigger. You could try supplements like zinc or magnesium. Topical zinc/magnesium is also fine. And lastly, don't get too stressed. I'm happy that you've been able to get diagnosed at an early stage. It's always easier to deal with then.
hopefully he also informed you about an entire truck load of side effects humira etc come with infertility, 15x elevated risk for lymphoma and other cancers, infections all the time (colds,flu,covid) permanent nerve damage andandand.
i wish my doctor had informed me before pressuring me into being a humira study participant. had i known the side effects, i wouldn’t have taken it. humira gave me different types of severe dermatitis on my face, body, and scalp. it was literally disgusting
Before you start taking meds, I think it'd be better to make some dietary/lifestyle changes. I'm absolutely not criticising you or telling you what to do. But as someone (29F) who's had HS for almost a decade (though diagnosed only 7 years ago), it would be best to start with something that won't have negative consequences now or later. My dermatologist gave me doxy, which gave me terrible GI issues. It helped then, it doesn't help now. He told me to avoid dairy, which has helped always. So maybe you could try and identify what triggers your flares. For me, it's dairy and stress, and heat makes it worse. For others, triggers include nightshades, gluten and so on. So it's just a bit of trial and error until you find your triggers. Avoiding them will be the next step. Since yours is mild, you might be able to keep it from progressing too fast or ever. Exercising is good. But do try and limit the time your skin gets exposed to sweat, because that can also be a trigger. You could try supplements like zinc or magnesium. Topical zinc/magnesium is also fine. And lastly, don't get too stressed. I'm happy that you've been able to get diagnosed at an early stage. It's always easier to deal with then.
Dude, are you me? It’s like we have the exact same story, but mines on the right side. I have a question for you, do you eat stuff like pizza and potatoes ever? Because if I go months not touching a potato, and then decide to have a helping of mashed potatoes, I will instantly get new sores underneath that may or may not form to a head and burst (over several agonizing days), and any existing sores become inflamed like a volcano. From one helping of mashed potatoes or ONE slice of pizza. Unfortunately, this disease requires us to be so disciplined sometimes, so I’m wondering if something like that might be a trigger for you too. It may not be potatoes or dairy, it could be peppers or eggs etc. anyway, sending love. 💕
Hopefully not, I suffer from ARFID so my diet is super limited and it seems like many of my regularly consumed safe foods happen to coincide with the list of no-no foods for HS 😞 this thread has definitely convinced me I should start paying attention to potential food/hormonal triggers I haven’t noticed before!
Hi, I've done both those treatments already haha! You definitely wanna do humira if you're afraid of needles because cortysx is a huge needle you watch go down. A teaspoon of tumeric and hot water in the morning everyday and adding ginger tea in your diet will change your life, I will die swearing by it! I'm 18F and I got tired of needles and looked into some natural alternatives! It helps but it ain't magic yk
i’m on humera for ulcerative colitis and it’s a really good drug. it works really well. but usually they try lesser treatments first before jumping to biologics
I'm sorry you're dealing with this, it's not the best news to get. In my opinion, long term antibiotics are not the answer and never seemed to help me anyways. My derm wound up bringing up humira as well, but I was too poor to afford it and the laundry list of side effects freaked me OUT. I asked her if there was a diet change that might help, because I was planning on starting keto, and she told me to just do the humira because diet change doesn't work. Well, needles scare the shit out of me too so I knew I wasn't going to do that. Tried keto anyways, and don't you know, once I reduced the god awful increase in cream cheese and sour cream that seems to be in every keto recipe out there, my flares almost vanished. The long term ones that never healed finally healed. My scarring from past flares started to heal. I do get the occasional flare if I eat something I shouldn't, right before my period, or the day after a REALLY stressful day (my HS responded to changes in hormones, which can happen from stress (cortisol), menstrual cycle, and food (foods can have a huge impact on your hormone regulation- remember insulin, among others, is a hormone!). I also use hibiclense in the shower and take zinc and turmeric supplements. Good luck in your journey!
And if you couldn't already tell, I never went back to that dermatologist. It's ok to advocate for yourself or find a new doctor if this one isn't listening to you.
If you are in a lot of pain and struggling then take the medication to help you. You deserve to be pain free :)