Hidradenitis Suppurativa

FOREVER21CORK

lockman wrote: »

Very sorry to hear your story. Unfortunately too many elements of your story are all too common in those with HS.

That is a bummer about the Humira. However, newer versions of it are in the pipeline, and similar drugs are being tested for HS at the moment. I am on a closely related drug, infliximab, and it seems to be working well. Has infliximab been mentioned to you?

Over the last 10 years, I have had gland removal on most of the usual places: armpits, groin etc. So far so good; the last time I had surgery was in 2014 and I have not had any recurrence since. I realise I am one of the lucky ones in that regard: recurrences can and do happen.

My surgeon was very, very reluctant to operate: he wanted to be sure that we had exhausted all other options prior to surgery and I think my dermatologist and I had tried most options at that stage. Just be aware of that.

PM me if you wish to discuss this privately. I am reluctant to share my surgeon's details publicly.

I read about infliximab through the internet but it was never mentioned to me as possible treatment. I have exhausted all avenues really ao i hope they will do the surgery... i know it can come back but if theres a chance it wont then il take that chance. Thanks for the reply... maybe i should not of shared the doctors names earlier 😣 ya i would love a suggestion of a surgeon.... thanks a mill

Vojera

lockman wrote: »

To anyone reading this thread who thinks they may have HS, but have yet to receive a diagnosis, the following may be of help:

https://irishskin.ie/research-trial-outbreaks-big-painful-boils-heal-scars/

Thanks so much for this, lockman. I spoke to the dermatology nurse and she sent me an email saying that I sounded suitable but would need to be referred, so I brought that to my GP along with the study details and he has sent my letter off. Before this he seemed kind of reluctant to refer me but he was all gig about it this time and kept the study details to look into it.

So touch wood I'm moving forward to getting my official diagnosis now and hopefully I'll eventually see some improvement.

So if anyone is having trouble with your GP, this is a great ice breaker.

lockman

A bit of potentially good news for a change, and led by an Irish team of researchers who have identified potential new HS treatment options.

For more, please see:
https://irishskin.ie/potential-now-treatment-hs/

nikkibikki

Hi all, I haven't had the time to read through the whole thread yet but I will!

I don't have HS but my Mam does and she's not a boards user so I have a few questions. Background first.

-symptoms first appeared when my youngest sibling was 6 weeks old, almost 30 years ago.
- just on armpit AFAIK
-long term courses of strong antibiotics for years.
-one GP would lance them for her.
-she had surgery around 15-ish years ago.
-they went away til a month ago.
-she's just over a year post chemo for ovarian cancer. All tests indicate so far it's all gone!
-massive amount of auto immune issues in our family. My own was triggered by pregnancy/birth too according to my rheumatologist.

Her current GP isn't great. But she has no choice due to the remoteness of where she lives. He didn't entertain the suggestions that this is HS, just said it was an abscess. She knows what it is.

I've read that it can be treated now with biologic type drugs like humira. I've been on that myself, currently on stelara. Similar type of drug.

Can dermatologists prescribe these? Anywhere I can find out treatment outcomes for HS?

Any recommendations for consultant in Galway? Public or private.

I know it's only one reoccurance but knowing this, it'll keep happening now. She's suffered enough over the last 18months.

lockman

nikkibikki wrote: »

Hi all, I haven't had the time to read through the whole thread yet but I will!

I don't have HS but my Mam does and she's not a boards user so I have a few questions. Background first.

-symptoms first appeared when my youngest sibling was 6 weeks old, almost 30 years ago.
- just on armpit AFAIK
-long term courses of strong antibiotics for years.
-one GP would lance them for her.
-she had surgery around 15-ish years ago.
-they went away til a month ago.
-she's just over a year post chemo for ovarian cancer. All tests indicate so far it's all gone!
-massive amount of auto immune issues in our family. My own was triggered by pregnancy/birth too according to my rheumatologist.

Her current GP isn't great. But she has no choice due to the remoteness of where she lives. He didn't entertain the suggestions that this is HS, just said it was an abscess. She knows what it is.

I've read that it can be treated now with biologic type drugs like humira. I've been on that myself, currently on stelara. Similar type of drug.

Can dermatologists prescribe these? Anywhere I can find out treatment outcomes for HS?

Any recommendations for consultant in Galway? Public or private.

I know it's only one reoccurance but knowing this, it'll keep happening now. She's suffered enough over the last 18months.

Yes, dermatologists can and do prescribe biologic drugs like humira, stelara and so on.

Dr. Trevor Markham at the Galway Clinic actively researches HS.
https://www.galwayclinic.com/medical-professionals/consultants-directory/dr/trevor/markham/105-22/

If your mam can travel, there is a free HS clinic run at St Vincent's Hospital in Dublin. They treat and research HS there. Contact the Dept of Dermatology at St. Vincent's for further information.

Hope the above helps.

lockman

nikkibikki wrote: »

Hi all, I haven't had the time to read through the whole thread yet but I will!

I don't have HS but my Mam does and she's not a boards user so I have a few questions. Background first.

-symptoms first appeared when my youngest sibling was 6 weeks old, almost 30 years ago.
- just on armpit AFAIK
-long term courses of strong antibiotics for years.
-one GP would lance them for her.
-she had surgery around 15-ish years ago.
-they went away til a month ago.
-she's just over a year post chemo for ovarian cancer. All tests indicate so far it's all gone!
-massive amount of auto immune issues in our family. My own was triggered by pregnancy/birth too according to my rheumatologist.

Her current GP isn't great. But she has no choice due to the remoteness of where she lives. He didn't entertain the suggestions that this is HS, just said it was an abscess. She knows what it is.

I've read that it can be treated now with biologic type drugs like humira. I've been on that myself, currently on stelara. Similar type of drug.

Can dermatologists prescribe these? Anywhere I can find out treatment outcomes for HS?

Any recommendations for consultant in Galway? Public or private.

I know it's only one reoccurance but knowing this, it'll keep happening now. She's suffered enough over the last 18months.

The HS team at St. Vincent's were recently looking for people just like your mam.

See: https://irishskin.ie/research-trial-outbreaks-big-painful-boils-heal-scars/

nikkibikki

Excellent thanks a million. I've sent her on both of those links.

lockman

If you think you/someone you know may have HS, these experts want to hear from you:

https://irishskin.ie/research-trial-outbreaks-big-painful-boils-heal-scars/

lockman

A nicely written and well-researched article on HS, with some useful tips and suggestions (written by a soon to graduate medical student; I wish more doctors were as well-informed as this one):

https://www.dermveda.com/learn/wellness/lifestyle/quality-of-life-in-hidradenitis-suppurativa

She recommends pilates and yoga. Anyone here do either/both?

Moyglish

Hi all.

I contacted St Vincent's regarding HS as part of a study that Lockman on here kindly provided the link to some months back.

I now have an appointment with them to get an official diagnosis.

Could anyone that has previously taken part in this study / is still part of it, please tell me what the initial consultation involves?

Will they want to see lesions and scarring and any active breakouts in the groin area? Do they take a blood test?

Also, if anyone could please tell me whereabouts in St Vincent's I need to go? I presume I'll be going to the dermatology department?

Or if anyone could recommend the best route to get there from Heuston Station, that would be most appreciated. Will be using public transport and I'm not too familiar with Dublin.

Thank you kindly!

lockman

Moyglish wrote: »

Hi all.

I contacted St Vincent's regarding HS as part of a study that Lockman on here kindly provided the link to some months back.

I now have an appointment with them to get an official diagnosis.

Could anyone that has previously taken part in this study / is still part of it, please tell me what the initial consultation involves?

Will they want to see lesions and scarring and any active breakouts in the groin area? Do they take a blood test?

Also, if anyone could please tell me whereabouts in St Vincent's I need to go? I presume I'll be going to the dermatology department?

Or if anyone could recommend the best route to get there from Heuston Station, that would be most appreciated. Will be using public transport and I'm not too familiar with Dublin.

Thank you kindly!

Hi there,

Been a while since my first visit to them, so things may have changed a little but here is what i recall.

You will first meet with a junior member of the team who will ask you a lot about yourself, vital statistics, how long you have had symptoms, medications and so on. This junior member briefs the senior consultant about you. You won't be asked the same questions twice.

Yes, they do like to take a good look at active areas and give you a once over. They are extremely professional and courteous when doing so. There is nothing to be concerned about in that regard as they have seen it all before (many times).

Yes, blood was taken from me on my first visit.

Yes, the dermatology department is where you need to go (it is one of the first buildings that you encounter when you arrive at St. Vincent's and is well sign-posted).

I travel from Heuston station also and here is the route i take:

Take the Luas from Heuston to Middle Abbey Street, once off the tram turn left onto O'Connell street, over O'Connell Bridge, left along the quays to Tara Street DART station (this walk only takes a few minutes). Take the DART from Tara Street to Sydney Parade station (this journey takes ~ 10 minutes). Take a left out of the station, until you meet a main road (Merrion road). Continue along this road until you meet a service station. St Vincent's is across the road on the right (walk from the station takes < 5 minutes).

If any Dublin natives or anyone else familiar with Dublin has a simpler travel suggestion, please let us know.

Suzannr87

Moyglish wrote: »

Hi all.

I contacted St Vincent's regarding HS as part of a study that Lockman on here kindly provided the link to some months back.

I now have an appointment with them to get an official diagnosis.

Could anyone that has previously taken part in this study / is still part of it, please tell me what the initial consultation involves?

Will they want to see lesions and scarring and any active breakouts in the groin area? Do they take a blood test?

Also, if anyone could please tell me whereabouts in St Vincent's I need to go? I presume I'll be going to the dermatology department?

Or if anyone could recommend the best route to get there from Heuston Station, that would be most appreciated. Will be using public transport and I'm not too familiar with Dublin.

Thank you kindly!

Hi,
Who did you contact to be part of this study? How did it go?

Thanks

lockman

Suzannr87 wrote: »

Hi,
Who did you contact to be part of this study? How did it go?

Thanks

Hi Suzannr87,

Contact details are here:
https://irishskin.ie/research-trial-outbreaks-big-painful-boils-heal-scars/

lockman

FYI, a HS information evening will take place on Thursday, Nov 1st at a central Dublin location. The meeting will feature healthcare professionals and others with interests in HS, and is a great opportunity to ask the healthcare professionals your questions about HS in an informal setting.

For more information, please see:

https://irishskin.ie/skin-matters-hidradenitis-suppurativa-hs-panel-discussion-meeting/

lockman

lockman wrote: »

FYI, a HS information evening will take place on Thursday, Nov 1st at a central Dublin location. The meeting will feature healthcare professionals and others with interests in HS, and is a great opportunity to ask the healthcare professionals your questions about HS in an informal setting.

For more information, please see:

https://irishskin.ie/skin-matters-hidradenitis-suppurativa-hs-panel-discussion-meeting/

Just 2 weeks to this event.

lockman

lockman wrote: »

FYI, a HS information evening will take place on Thursday, Nov 1st at a central Dublin location. The meeting will feature healthcare professionals and others with interests in HS, and is a great opportunity to ask the healthcare professionals your questions about HS in an informal setting.

For more information, please see:

https://irishskin.ie/skin-matters-hidradenitis-suppurativa-hs-panel-discussion-meeting/

A little under a week to go to this free event.

lockman

lockman wrote: »

FYI, a HS information evening will take place on Thursday, Nov 1st at a central Dublin location. The meeting will feature healthcare professionals and others with interests in HS, and is a great opportunity to ask the healthcare professionals your questions about HS in an informal setting.

For more information, please see:

https://irishskin.ie/skin-matters-hidradenitis-suppurativa-hs-panel-discussion-meeting/

This is on tomorrow.

If you cannot attend but wish to view this event online, please click the link above and register for the event. You will be sent an email with a link tomorrow that will give you access to the webinar.

lockman

HS Social Gathering: Lunch in Limerick (October 12)

A few HS patients will get-together in Limerick, on Saturday, October 12, at 12:30 h. We will have lunch in a central hotel where you will have the opportunity to meet others with HS and share stories, tips, and information etc.

I have had the pleasure of meeting some of you at such events and/or in-person in the past, and I have found each and every meeting a pleasure and have learned so much from meeting others with HS.

All are welcome to attend - just let me know in advance so we can plan accordingly. If interested, please message me directly.

We plan other similar events at various locations around the country soon afterward. Details to follow.

Hope to see/hear from you soon.

lockman

lockman wrote: »

HS Social Gathering: Lunch in Limerick (October 12)

A few HS patients will get-together in Limerick, on Saturday, October 12, at 12:30 h. We will have lunch in a central hotel where you will have the opportunity to meet others with HS and share stories, tips, and information etc.

I have had the pleasure of meeting some of you at such events and/or in-person in the past, and I have found each and every meeting a pleasure and have learned so much from meeting others with HS.

All are welcome to attend - just let me know in advance so we can plan accordingly. If interested, please message me directly.

We plan other similar events at various locations around the country soon afterward. Details to follow.

Hope to see/hear from you soon.

Just a week to go to this. If interested in coming along, please send me a message.

lockman

Researchers at Trinity have made a big breakthrough in understanding inflammatory conditions, like HS. It may be a while before new treatments are developed from this, but it opens up new avenues of research for drugs for the like of HS.

For more, see this link from Trinity's news room.

In 2017, researchers at the same research institute inTrinity made another big breakthrough in understanding HS, which has allowed dermatologists to use drugs like secukinimab in treating HS. See here for more.

Gael23

I have a lot of symptoms of this and I’m feeling quite frightened. Have an appointment with a Dermatologist in October.

Where are the growths typically?