23y/o
I have had HS for about 5 years. Was diagnosed 2 years ago. Doxycycline kept me in complete remission for 12 months, but then switched to Roaccutane because of facial acne, but HS returned. Probably will give antibiotics another go now.
My HS has always been very mild stage 1 compared to most. My dermatologist says there is a fair chance of being able to prevent much progression with persistent monitoring and medical therapy for my life. But when I go online, it seems like most people have it quite bad. The derm says that most people who have it bad are those who had waited years before seeking treatment and let it get bad.
Are there people out there who have been able to manage/contain HS reasonably well? Or does everyone inevitably progress from Stage 1 to Stage 3? There doesn't seem to be much evidence in the literature regarding what proportion of patients progress to severe forms of disease. If this disease does indeed affect 1-4% of the population, surely not EVERYONE gets it that bad?
I have had HS for 13 years the first 8ish years it was back and forth in and out of remission. I had a few highly stressful events take place and at the same time became sensitive to antibiotics. My HS started to develop in new places and I had no way of treating it so I am now stage 3. I dont hear from a lot of people who are not stage 3 but I didn't reach out until it was really bad for me.
nueva zelanda,
Tengo HS desde hace 16 años y, afortunadamente, he permanecido en el estadio 1 todo este tiempo. Tomo un antibiótico en dosis bajas, vigilo lo que como (mis desencadenantes son el exceso de lácteos, las bayas antioxidantes y algunas solanáceas) y no uso nada con spandex o poliéster.
He tenido algunos brotes graves, pero puedo controlarlos siguiendo los pasos de mi primer párrafo.
No sé si una vez que tienes HS, la tienes para siempre o si disminuye con la edad. Supongo que solo el tiempo lo dirá. Supongo que la respuesta a tu pregunta es sí, puedo manejarlo y contenerlo.
Hi. Well I'm 27 now and I've had HS for a few years and when my regular doctor didn't know what was going on in my armpits she sent me to a dermatologist. That's where I got diagnosed. At the time my HS was just painful bumps but then turned into holes and have the scarring. I also have a genetic health condition that plays a role in having HS. I'm at stage 2 right now, not sure if I've already reached stage 3 yet or not but my case may not be as bad as others have it but it's still awful. I have not had any surgery to remove anything yet so I guess that's good even though I've reached plenty of points where I would've loved to. I tried the antibiotics thing but so far any that I've tried since I was first diagnosed they didn't do anything for mine. It was like I wasn't even taking anything. So when I get a hole I just keep it covered with a gauze pad and some sensitive skin pain free tape, it seems to me they heal better when covered. If I'm in pain caused by the bumps I take tylenol. I've looked up the disease many times and I've read each time that this disease does have 3 stages that it goes through. I was also told that it can be helped a little to try and keep it under control by my dermatologist but I haven't had to go see her... Although my HS has been a constant battle even before I was diagnosed, I had had HS for almost a year or so before being diagnosed. I've never seen remission and I'm not sure that I will. I think anyone's case could be mild but I think eventually it will go to stage 3. I've also heard that eliminating nightshades from people's diet can help and even help get to remission or at least find what nightshade(s) are possibly triggering the HS. I'm still working on that part myself it's just hard cuz I love pretty much everything on the nightshades list, they play a huge role in my diet. Well good luck and wish you well.
Hi. I'm more than sure the disease is chronic meaning it's incurable. I was told by my dermatologist.
Kia ora, I have had it for about the same length of time as you and I am still instage one. I currently am in remission and drug free (except for curcumin once I feel a flare starting). I am hopefull that I will stay that way !!!! I have read that not everyone progresses and it is important to deal with it in the early stages.
Yes I have been told this as well.
I just started antibiotics, which will hopefully induce remission. And the plan from there on in is to try some time without antibiotics, but start taking them whenever it comes back, to keep this thing under water.
I just hope we can both gain the best possible control of this thanks to our early diagnoses and live normal lives!
To be honest, if I was told I would have to live the rest of my life with Stage I, I'd accept it. I'm just terrified of the potential progression and a life of misery with constant visits to the surgeon..
Have you been properly diagnosed by a doctor? Has the doctor been advising you what you should be doing?
Yes I have been diagnosed by a Dr and was told to go look at the "patient" website. She was good for antibiotics but little else. I was also dx with PCOS and put on Ginet which controlled the flares. However, I was free of both conditions until I reached my mid 40's and while it happens most people have both these conditions from pubity. I went on a quest to understand why it would happen this late in life and and discovered by chance I was prediabetic/ syndrome X. My PCOS dx has been reversed ( the dx was bollocks) I am off the Ginet, and I have focused on reducing my androgen levels by reducing my insuline levels (diet, sleep, de stress and excercise) - working so far. I was also prescribed Vit. D which probably is useful.
Ojalá aún estuviera en la etapa 1, la mía comenzó alrededor de tu edad, bajo mis senos de todos los lugares. Un quiste alrededor de la época de mi período y luego desaparecía, pasaban un par de meses y volvía a aparecer en el mismo lugar. Nunca fue enorme y lo traté como un forúnculo y funcionó con un ungüento de extracción por la noche. Luego cumplí 30 años y el dicho de que todo va cuesta abajo cuando cumples 30, bueno, literalmente fue así... Luego empecé a tenerlos en la axila, centralizados en mi lado derecho. Nuevamente lo traté como un forúnculo, pero fui a un dermatólogo y no me ayudó, literalmente me dijo que empezara a usar un lavado con peróxido de benzoilo y que usara desodorante sin perfume. ¡Eso no ayudó! Aproximadamente 5 años de quistes intermitentes y vi a un buen médico de atención primaria y ella echó un vistazo y dijo que tienes HS. ¡Finalmente alguien podía explicar por qué los estaba teniendo, pero ella no tenía un pronóstico real o tratamiento más que antibióticos y así que me recetaron Doxiciclina y como a ti me ayudó. Avanzando rápido, un brote leve aquí y allá y una mudanza a otro estado y algunas situaciones estresantes entre medio y empezaron en mis muslos y la zona del bikini. Lo extraño es que ahora nunca los tengo bajo los senos y mi axila derecha dejó de tenerlos (aunque con cicatrices). Sin embargo, mi axila izquierda acaba de empezar y ahora estoy cerca de los 40. No tengo SOP pero creo que el consejo de "ingoldsby" tiene algo de verdad. Soy deficiente en vitamina D, vivo en la parte noreste de EE. UU. y no tenemos largos períodos de sol, especialmente en los meses de invierno y otoño y diré que los míos están en su peor momento entonces y luego les toma semanas sanar en la primavera y el verano. Personalmente, seguiría su consejo y me haría una prueba de deficiencia de vitamina D y comenzaría a tomar un suplemento de Curcumina. Personalmente, acabo de empezar a tomar un probiótico para equilibrar los niveles de bacterias en mis intestinos para ver si alguna bacteria mala podría estar entrando en mis glándulas. Las glándulas apocrinas son las típicamente afectadas y son donde más sudas. Creo que también prestaré más atención a lo que como y comenzaré a comer de manera más limpia, menos lácteos y carbohidratos. Me encanta la pasta y como tú, los solanáceos (hay que tener una buena salsa para acompañar esa pasta) pero los como con menos frecuencia. Durante la semana, más verduras y proteínas y dejar los carbohidratos para el fin de semana y veré cómo me siento. Espero que te quedes en la etapa 1, tenerlos en la ingle es lo peor. Los míos estuvieron sin diagnosticar o mal diagnosticados durante tantos años. Incluso mi nuevo médico acaba de aprender de la enfermedad aquí, pero no está claro sobre cómo tratarla realmente, por eso recurro a este sitio. Creo que todos podemos ayudarnos a entender y dar consejos y consejos que pueden o no funcionar, pero vale la pena intentarlo, considerando la alternativa de los antibióticos. Realmente creo que mucho más del 1-4% de la población está afectada y tal vez solo se refieren a EE. UU. cuando obtienen ese número, porque he hablado con otras personas de todo el mundo que están experimentando lo mismo. Espero que más médicos reciban una mejor capacitación y tal vez entiendan que incluso los alimentos más saludables pueden estar afectándonos de más de una manera y una gran parte de esta enfermedad parece estar afectada por nuestras dietas. También podría ser los pesticidas y las hormonas añadidas que ingerimos. Simplemente no tengo el dinero para comprar en Whole Foods de manera consistente para comprar todas las cosas orgánicas (o supuestamente orgánicas) y carnes naturales.