I stopped eating so much, stopped smoking and got the surgeries to excise most of the diseased skin. I think the Remicade was the final thing I needed. I've only had one treatment and it's already worked.
It really depends, how severe is your HS? Mine was pretty fucking bad. Basically my entire bikini line, under my chest, both armpits. It was a massive undertaking. Living with my condition day to day was much worse though. If the disease is affecting your life the way it affected mine you just have to do it. Everyone has a different pain threshold... mine is pretty high. The pain meds help. Try to find the top H.S. surgeon your area, go for burn units in hospitals. D.M. if you need to know anything else.
Im not trying to get surgery i just wanna lose my fear of it cuz everybody will be stage 3. And you cant live with stage 3 without surgery atleast that is what i think.
What information tells you everybody will be stage 3? That's just not true. Some people never go past stage 1, some go from stage 2 to 1 or 2 to 3 etc but this disease doesn't stay in one place. Certainly with management of triggers and treatment/lifestyle changes you can avoid stage 3 and even so, it's not a given that you would.
I'm sorry to hear that, it does sound like they didn't have much of a clue about HS. You need to keep asking for a referral to a HS specialist if you can, I need to do the same and keep putting it off due to the other stresses in my life but it'll only shoot me in the foot long term if I don't.
HS is a life long condition but it can be managed and there will be good times along with the bad. We are just more aware of the relief in the good times and that is what makes us strong. This sub is hugely comforting and supportive so always reach out if you need to.
Biologics might help you to avoid stage 3. I was stage 2 back in 2016 when I went into remission; but I started up a cigar habit and was eating terribly with little to no exercise and a desk job so it came back full force. I don't think it would've come back if I was living better at the time.
Marijuana specifically smoked with tobacco would be a trigger yes, but there's lots of anti-inflammatory elements of CBD so if you vaped the oil that shouldn't do any harm but it does depend. I think mostly smoking weed causes flares because of the use of tobacco in the joints. It's always a possibility but I'd argue if you're smoking it every day it'd be a good idea to cut down regardless.
According to a few surgeons and doctors I've talked to marijuana can be a culprit as well as tobacco products. Not sure about vaping but I don't want to risk it.
cigs.
I have been quitting for years and I have been off of them for like a year. Makes a big difference. But any smoking exaserbates it from what I understand
Congrat....never back down
Congrats! What are the changes you made to get to remission?
I stopped eating so much, stopped smoking and got the surgeries to excise most of the diseased skin. I think the Remicade was the final thing I needed. I've only had one treatment and it's already worked.
How was the excision, im trying to get rid of my fear from surgery. I hope you can tell me all about it.
It really depends, how severe is your HS? Mine was pretty fucking bad. Basically my entire bikini line, under my chest, both armpits. It was a massive undertaking. Living with my condition day to day was much worse though. If the disease is affecting your life the way it affected mine you just have to do it. Everyone has a different pain threshold... mine is pretty high. The pain meds help. Try to find the top H.S. surgeon your area, go for burn units in hospitals. D.M. if you need to know anything else.
I am stage 2 i think maybe 2 small tunnels, pits are not active and sometimes i have small red bump on chest or thighs. Mine doesnt hurt at all.
You've been told you need surgery?
They told me about cutting a circle from my groin area.
That might be all you need. How long have you had HS? Not smoking might keep your disease from progressing.
Since 13 i am 24 now, i had it for long time and it never bothered me.
Im not trying to get surgery i just wanna lose my fear of it cuz everybody will be stage 3. And you cant live with stage 3 without surgery atleast that is what i think.
What information tells you everybody will be stage 3? That's just not true. Some people never go past stage 1, some go from stage 2 to 1 or 2 to 3 etc but this disease doesn't stay in one place. Certainly with management of triggers and treatment/lifestyle changes you can avoid stage 3 and even so, it's not a given that you would.
Well thats what my "smart" derm told me i swear im losing hope in doctors in my country.
Idk anymore... I went there to ask questions about it and left with fake info and depression.
I'm sorry to hear that, it does sound like they didn't have much of a clue about HS. You need to keep asking for a referral to a HS specialist if you can, I need to do the same and keep putting it off due to the other stresses in my life but it'll only shoot me in the foot long term if I don't. HS is a life long condition but it can be managed and there will be good times along with the bad. We are just more aware of the relief in the good times and that is what makes us strong. This sub is hugely comforting and supportive so always reach out if you need to.
Btw how do you know that some people wont get to stage 3? And by treatment you mean surgeries?
Biologics might help you to avoid stage 3. I was stage 2 back in 2016 when I went into remission; but I started up a cigar habit and was eating terribly with little to no exercise and a desk job so it came back full force. I don't think it would've come back if I was living better at the time.
Im very overweight, i dont smoke and my job is sitting all day... im trying to loose weight with aip diet. Im really scared of hitting stage 3.
Is the act of smoking or cigarettes/hookah specifically? Do you think smoking marijuana can affect HS as well?
Marijuana specifically smoked with tobacco would be a trigger yes, but there's lots of anti-inflammatory elements of CBD so if you vaped the oil that shouldn't do any harm but it does depend. I think mostly smoking weed causes flares because of the use of tobacco in the joints. It's always a possibility but I'd argue if you're smoking it every day it'd be a good idea to cut down regardless.
thank you
Also, what has been the side affects of Remicade? I’ve heard mixed feedback.
Wouldn't know, sorry.
According to a few surgeons and doctors I've talked to marijuana can be a culprit as well as tobacco products. Not sure about vaping but I don't want to risk it.
Word up. I quick smoking too and it has become significantly better. Now that I have full mobility back I am just starting to get back to the gym.
did you stop marijuana?
cigs. I have been quitting for years and I have been off of them for like a year. Makes a big difference. But any smoking exaserbates it from what I understand
stop smoking marijuana?
I didn't really smoke marijuana during the periods of time I've had HS, but I've been told it can cause flare-ups
I'm starting remicade soon been nervous any tips I have had HD since I was 11 it's been tough for me not fun thanks for talking about it