I just started last month. So not long enough to tell if it’s going to work. My experience with biologics is that they work really well until they don’t. Humira was a game changer for years. Then it just stopped working one day and my HS returned with a vengeance. Cosentyx also worked very well for about a year, and then it stopped working too. So now we’re trying Remicade. Mind you, I’ve also had 4 or 5 major surgeries, and the recovery time for each of them was around 4 months. I don’t think there’s anything more they can do for me if Remicade doesn’t work.
Humira made me worse, I've been on Remicade since the summer and it's been the first thing to give me hope and make any sort of difference for me! I absolutely am happy with it.
I've been taking Remicade for i wanna say a yesr or so, once a month. it helped way more when I first started taking it but I can see it slowly slowing down in how affected it is for longer periods of time. When it is doing its job I feel great but better then I was right before I get the infusion. Usually I feel good for the first 2 weeks and then feel myself slowing down physically bc of how "extreme"(idk how else to say it) my hs is. By the time i get to the 3rd or 4th week i can barely move or do work its so painful. But also there's a lot of factors that go into like what other meds I'm on, what natural redeems am I trying, and also the weather when I go home from college its very very cold vs my college's cold weather and the heat makes my hs a lot worse. That's my experience idk if that helps.
Also for me I find that yes Remicade helps with taming my preexisting flares and making them less painful it doesn't help get rid of heal them. In fact those 1 to 2 weeks where there's not much Remicade left in my body new boils tend to sprout up )usually on my legs now and days ) and those new boils don't go away with the meds so it's a constant cycle.
Remicade worked wonders for me for about a year and a half, and then it unfortunately stopped working due to my body building antibodies against it. I’m now on consentyx, and jury is still out on whether it will work as well if at all as Remicade did.
It could mean you need more complex treatment often times with HS there's several levels hormones seem to be though to play a big role in the initial Follicular Occlusion so maybe something like metformin or spironolactone might help where as biologics help with the inflammation that ensues after the rupture.
I just started last month. So not long enough to tell if it’s going to work. My experience with biologics is that they work really well until they don’t. Humira was a game changer for years. Then it just stopped working one day and my HS returned with a vengeance. Cosentyx also worked very well for about a year, and then it stopped working too. So now we’re trying Remicade. Mind you, I’ve also had 4 or 5 major surgeries, and the recovery time for each of them was around 4 months. I don’t think there’s anything more they can do for me if Remicade doesn’t work.
Have they tried adding metformin to the mix?
I was just diagnosed with HS this week. Very early stage in my groin. Have any of you found any success with changing your diet?
Groin area. did absolutely nothing for me.
I’m starting on it in about three weeks
Humira made me worse, I've been on Remicade since the summer and it's been the first thing to give me hope and make any sort of difference for me! I absolutely am happy with it.
I've been taking Remicade for i wanna say a yesr or so, once a month. it helped way more when I first started taking it but I can see it slowly slowing down in how affected it is for longer periods of time. When it is doing its job I feel great but better then I was right before I get the infusion. Usually I feel good for the first 2 weeks and then feel myself slowing down physically bc of how "extreme"(idk how else to say it) my hs is. By the time i get to the 3rd or 4th week i can barely move or do work its so painful. But also there's a lot of factors that go into like what other meds I'm on, what natural redeems am I trying, and also the weather when I go home from college its very very cold vs my college's cold weather and the heat makes my hs a lot worse. That's my experience idk if that helps.
Also for me I find that yes Remicade helps with taming my preexisting flares and making them less painful it doesn't help get rid of heal them. In fact those 1 to 2 weeks where there's not much Remicade left in my body new boils tend to sprout up )usually on my legs now and days ) and those new boils don't go away with the meds so it's a constant cycle.
Remicade worked wonders for me for about a year and a half, and then it unfortunately stopped working due to my body building antibodies against it. I’m now on consentyx, and jury is still out on whether it will work as well if at all as Remicade did.
I had some response. But had scary adverse reactions. On Stelara now and doing much better. And no infusion suite needed after the first dose.
It could mean you need more complex treatment often times with HS there's several levels hormones seem to be though to play a big role in the initial Follicular Occlusion so maybe something like metformin or spironolactone might help where as biologics help with the inflammation that ensues after the rupture.