Hidradenitis Suppurativa

lockman · 29-10-2016 3:10pm

lockman wrote: »

Hello all,

An HS support group meeting is being held on the afternoon of Saturday, Nov. 12th, from 14:00-16:00, in a central Galway location. It will be a good chance to meet others with the condition, and to exchange information and tips on living with HS. All are welcome to attend. Feel free to bring a friend, partner, loved one etc.

For further information on this event, details on location etc., please send me a PM.

Two weeks to this.

lockman · 05-11-2016 4:45pm

lockman wrote: »

Hello all,

An HS support group meeting is being held on the afternoon of Saturday, Nov. 12th, from 14:00-16:00, in a central Galway location. It will be a good chance to meet others with the condition, and to exchange information and tips on living with HS. All are welcome to attend. Feel free to bring a friend, partner, loved one etc.

For further information on this event, details on location etc., please send me a PM.

One week to this.

lockman · 27-11-2016 8:01pm

HS featured on a recent episode of RTE's You Should Really See A Doctor. Here is a link to the show:

http://www.rte.ie/player/ie/show/you-should-really-see-a-doctor-30003663/10653666/

The first section is ~ 2 mins long and starts at 07:10.

The follow-up is ~ 1 min long and starts at ~17:15.

While it is good to see awareness of the condition being raised by featuring on shows such as this, I feel it was very much a missed opportunity. They neglected to mention how it impacts psychologically as well as physically; in addition, the physical discomfort barely got a mention.

lockman · 18-02-2017 8:58pm

Hello All,

For those who may be interested, a community meeting for those living with HS will take place in a central Dublin hotel this April. The meeting will feature a talk from a dermatologist active in treating and researching HS.

Further details:
http://bit.ly/2lSjoz1

lockman · 21-02-2017 9:05pm

There will be a community meeting for those with HS, their friends and families etc., in a city centre hotel in Cork this April 19th. If you are in/near Cork on that date, please feel free to come along.

A Cork-based dermatologist will be the guest speaker at the event.

Further details:
http://bit.ly/2lPsegm

lockman · 03-03-2017 3:36pm

lockman wrote: »

Hello All,

For those who may be interested, a community meeting for those living with HS will take place in a central Dublin hotel this April. The meeting will feature a talk from a dermatologist active in treating and researching HS.

Further details:
http://bit.ly/2lSjoz1

Just under 5 weeks to this. If interested, please click on the link and register so we know roughly how many will be attending. Thank you.

lockman · 06-03-2017 2:25pm

Today sees the launch of a new initiative by the Irish Skin Foundation charity,, highlighting that it takes the average HS patient:

- 5 different doctors
- seen over 17 visits
- and approx. 8 years, to receive their HS diagnosis.

This needs to change.

http://irishskin.ie/five17eight/

lockman · 06-03-2017 6:30pm

The Irish Skin Foundation have today published an HS information booklet. .

It exceeds the size limit for boards, but you can access it here:
https://irishskin.ie/five17eight/

Download it/print it off and give it to your friends/family/doctors to educate them about HS

pilly · 08-03-2017 12:45pm

So glad to have found this thread, I've suffered with this for at least 10 years now. Had initial surgery about 7 years ago but the pain afterwards was unbelievable. Then got it somewhat under control with medication and got good relief with small relapses for many years. Now flaring up again and very painful.

I wonder does the medicine lose its effectiveness after a certain amount of time?

lockman · 08-03-2017 8:53pm

pilly wrote: »

So glad to have found this thread, I've suffered with this for at least 10 years now. Had initial surgery about 7 years ago but the pain afterwards was unbelievable. Then got it somewhat under control with medication and got good relief with small relapses for many years. Now flaring up again and very painful.

I wonder does the medicine lose its effectiveness after a certain amount of time?

Glad you found us.

Very sorry to hear you have had a relapse. Are you seeing a GP or dermatologist at the moment? Various new medications have become available for HS in the past few years.

pilly · 08-03-2017 11:29pm

lockman wrote:

Very sorry to hear you have had a relapse. Are you seeing a GP or dermatologist at the moment? Various new medications have become available for HS in the past few years.

I have a good GP, think I'll go back alright. Taking oxytetracycline for years now so maybe it's just not working any more.

lockman · 09-03-2017 2:16pm

FYI

lockman wrote: »

Hope you are all well.

Some of you may already know about this and may be attending already, but for the benefit of those who don't.

In recent months, an HS clinic has been established in the dermatology department at St. Vincent's hospital in Dublin. It is run by a team of dermatologists with HS research interests, and crucially, experience in treating the condition.

The dermatologists running this clinic are also actively involved in HS research.

It is, to my knowledge, the only such HS clinic being run in the country. The good news is that it is open to anyone with the condition. All you will need is a letter of referral from your GP confirming that you have HS. If you require further information, please PM me.

lockman · 09-03-2017 2:18pm

pilly wrote: »

I have a good GP, think I'll go back alright. Taking oxytetracycline for years now so maybe it's just not working any more.

For most effective management of the condition, a dermatologist is advocated by most experts.

There is a free HS clinic at St Vincent's University Hospital in Dublin 4 (for details please see above post). You do not have to live in/near Dublin to be able to attend: it is open to all people living in Ireland.

Vojera · 10-03-2017 1:29pm

I've been lurking in this thread for a while but wanted to make my first post.

I haven't been diagnosed with HS but looking at my symptoms it seems to match up perfectly. According to the very helpful booklet that lockman linked to, I'd be somewhere on the scale between stage 2 and stage 3.

My problem, though, is that my GP keeps saying it's folliculitis. That's fair enough if that's the case, but I really feel that doesn't match my symptoms. I have a lot of scarring and tracts in my armpits in particular and I'm being cycled between erythromycin and lymecyclin antibiotics but I don't find much, if any, improvement.

Can someone explain to me what differences I might see between folliculitis and HS? And any tips for convincing my GP to have a more considered look? I've asked him about HS but he didn't seem to know much about it.

lockman · 11-03-2017 11:39am

Vojera wrote: »

I've been lurking in this thread for a while but wanted to make my first post.

I haven't been diagnosed with HS but looking at my symptoms it seems to match up perfectly. According to the very helpful booklet that lockman linked to, I'd be somewhere on the scale between stage 2 and stage 3.

My problem, though, is that my GP keeps saying it's folliculitis. That's fair enough if that's the case, but I really feel that doesn't match my symptoms. I have a lot of scarring and tracts in my armpits in particular and I'm being cycled between erythromycin and lymecyclin antibiotics but I don't find much, if any, improvement.

Can someone explain to me what differences I might see between folliculitis and HS? And any tips for convincing my GP to have a more considered look? I've asked him about HS but he didn't seem to know much about it.

I imagine that only a healthcare professional would be able to distinguish between the two.

With regards to your GP, have you considered seeking a second opinion?

Vojera · 20-03-2017 10:54am

I think that might be the best option. I'll look into seeing another in the area.

lockman · 22-03-2017 2:26pm

lockman wrote: »

Hello All,

For those who may be interested, a community meeting for those living with HS will take place in a central Dublin hotel this April. The meeting will feature a talk from a dermatologist active in treating and researching HS.

Further details:
http://bit.ly/2lSjoz1

2 weeks to this event.

lockman · 27-03-2017 4:59pm

A brave lady has spoken out about living with HS in this recent edition of The Sunday Independent:
http://www.independent.ie/life/health-wellbeing/health-features/i-avoided-getting-close-to-people-especially-boys-photographer-on-living-with-a-chronic-skin-condition-that-causes-cysts-35550950.html

lockman · 27-03-2017 5:03pm

Another brave lady speaks out about living with HS in a recent Irish Mirror: www.irishmirror.ie/lifestyle/health/brave-irish-mum-speaks-out-10098832

pilly · 28-03-2017 9:45am

lockman wrote: »

Another brave lady speaks out about living with HS in a recent Irish Mirror: www.irishmirror.ie/lifestyle/health/brave-irish-mum-speaks-out-10098832

Excellent article, fair play to her.

lockman · 06-04-2017 4:11pm

lockman wrote: »

There will be a community meeting for those with HS, their friends and families etc., in a city centre hotel in Cork this April 19th. If you are in/near Cork on that date, please feel free to come along.

A Cork-based dermatologist will be the guest speaker at the event.

Further details:
http://bit.ly/2lPsegm

Just under 2 weeks to this event. All are welcome.

lockman · 12-04-2017 12:24pm

lockman wrote: »

There will be a community meeting for those with HS, their friends and families etc., in a city centre hotel in Cork this April 19th. If you are in/near Cork on that date, please feel free to come along.

A Cork-based dermatologist will be the guest speaker at the event.

Further details:
http://bit.ly/2lPsegm

One week to this event. All are welcome.

lockman · 13-04-2017 7:55pm

Another brave lady tells her story of living with HS in The Irish Examiner:
http://www.irishexaminer.com/lifestyle/features/it-took-eight-years-to-get-a-correct-diagnosis-for-hs-447644.html

The headline reads:"It took eight years to get a correct diagnosis for HS". Well done Caroline.

lockman · 17-04-2017 12:19pm

lockman wrote: »

There will be a community meeting for those with HS, their friends and families etc., in a city centre hotel in Cork this April 19th. If you are in/near Cork on that date, please feel free to come along.

A Cork-based dermatologist will be the guest speaker at the event.

Further details:
http://bit.ly/2lPsegm

Just 2 days to this. Hope to meet some of you there.

lockman · 21-04-2017 1:30pm

Please see link for a series of 11 short (~ 5 minutes each) information videos on HS, from MD Magazine in the US. The presenter is a leading HS expert, clinician and researcher and he seems to have a very good understanding of how the condition can impact on one's life, beyond the more obvious physical effects.

http://www.mdmag.com/insights/hidradenitis-suppurativa/understanding-hidradenitis-suppurativa

lockman · 06-06-2017 1:33pm

HS was discussed on The Pat Kenny Show on Newstalk:

http://www.newstalk.com/podcasts/The_Pat_Kenny_Show/Highlights_from_The_Pat_Kenny_Show/195014/Skin_care_advice_Teen_sunbed_use_continues_to_rise

It is on at the very start of this podcast and the discussion last ~ 5 mins.

lockman · 07-06-2017 6:43pm

If you wish to try and explain to someone what living with HS is like, please show them the video on this page from Australia. It is excellent:

http://www.hs-online.com.au/

lockman · 10-06-2017 5:49pm

https://www.nobsabouths.com/

lockman · 19-06-2017 7:49pm

The week June 5-11 is HS awareness week in the UK.

HS got a few mentions in the UK and international press as a result. See the link for more:
http://www.hssupport.eu.org/2017/06/16/hidradenitis-suppurativa-press/

riddles · 23-06-2017 5:04am

I suffered a bad gout attack two weeks ago leg and knee and to cap it off suffered a simultaneous HS attack in my armpit. All told unbearable pain. I went to the doc and got steroids and duclac tabs for the gout.

For the HS I recommend turmeric or better again curcumin tabs and magnesium lotion. I'm a week into the HS attack and it's actually about 40% on the mend the extreme heat and pain is nearly gone.

I think the link for me is the uric acid elevation. I was smoking and drinking beer which potentially triggered the gout and the HS. I'm half way through the autoimmune fix by tony o' Bryan - I'd recommend it as an eye opening read. I think nightshades and alcohol are definitely a trigger for me but the book has a food elimination plan I intend to implement.

lockman · 22-07-2017 2:10pm

An Irish-based research team has made a significant breakthrough in understanding HS.

The team based at Trinity and elsewhere in Ireland, have enhanced understanding of the disease. They identified particular cell types that can play a role in HS. Crucially, there already exists several drugs that can target the cells identified by the researchers as causing/contributing to HS. It will be a while before the existing treatments are approved specifically for HS but with this news we have a head start in developing new HS treatments.

For more, see the link:

https://www.sciencedaily.com/releases/2017/07/170719100529.htm

LegacyUser · 21-08-2017 9:20am

Hi All,

I am a 31year old female with stage gazillion of HS, both armpits, thighs, stomach, under breasts and groin for the last 18 years .

I am a very happy person, never really let it get to me and I always exercised, went out dancing etc. which of course was all put on because I was afraid of my life with any sexual relationships, but sadly it is weighing me down the last couple of months now I have come to the end of my strength and I am willing to do just about anything to get rid of this.

I have tried every treatment, antibiotics out there and nothing works for me. I have changed my diet etc. I travel to Dublin bi monthly for appointments with Dr Brian Kirby in St Vincents and every three months to Professor Winters in St Michaels where I get ceton insertion surgery that keeps my tracts open. but I just keep getting flare ups and new lumps, theo nly thing the surgery seems to do is keep the old ones from returning, but there constantly draining and I feel like I smell, I usually never miss work I am really a good patient but the last couple of months I have missed a lot of work and didn't even feel like leaving the house this weekend.

I am very angry with all the doctors because they are very slow to put me on the right medication or perform the right surgery, If I didn't have to go through all the acne medication when I was younger when we knew it wasn't acne, maybe I would be in a better position today. I have gone in front on Dermatology boards since the age of 13, been case studies, guinea pig - everything. I give a lot of blood for research - and the next time I visit Dublin I am giving a bit of my skin for the skin cell research etc. can they not see that after 18 years nothing works for me. I was so happy to hear about Humira when it was approved for HS last year, I am now injecting 12 months with no improvement. I am angry to find out that people have been using Humira for HS since 2011/12, why did they not put me on it then?

Obv being 31 It would be natural for me to be in relationships etc but I am absolutely terrified with someone I actually fancy, someone would think I am diseased. so embarrassed of this condition. something needs to be done. I am now going to push for gland removal surgery, I was told no many times before as it is quite messy and can reverse itself. but If I even got a year pain free I would be getting somewhere. I have come across people on many different forums who have had the operation with very mild HS.

Can anyone tell me where they got the surgery done or how I go about it as I will have to change doctors?

thanks in advance

FOREVER21CORK · 21-08-2017 9:27am

Hi all,

I literally just typed a big long waffly message and It disappeared

Basically, I am a 31 year old female with stage gazillion of HS I have done absolutely everything to manage it/get rid of it, nothing works. I am injecting about a year now but still very bad flare ups, I have come to the end of my strength, I want to go about gland removal in all areas, both my arm pits, groin, under the breast and inner thigh. My doctors seem very slow to put me on anything or refer me for the surgery, Can anyone tell me where in Ireland I could get it done?

thanks

Kurtosis · 21-08-2017 10:49am

It looks like your first post went through as an unregistered/guest post. I've approved it above so it should all be there for you.

pilly · 21-08-2017 1:02pm

FOREVER21CORK wrote: »

Hi all,

I literally just typed a big long waffly message and It disappeared

Basically, I am a 31 year old female with stage gazillion of HS I have done absolutely everything to manage it/get rid of it, nothing works. I am injecting about a year now but still very bad flare ups, I have come to the end of my strength, I want to go about gland removal in all areas, both my arm pits, groin, under the breast and inner thigh. My doctors seem very slow to put me on anything or refer me for the surgery, Can anyone tell me where in Ireland I could get it done?

thanks

I went to see a skin specialist in his private clinic in Palmerstown/Lucan and had the op in Tallaght, I can't for the life of me remember his name now but someone on here might know.

I'm not going to lie the pain after the op was excruciating but it has saved me from extremely bad flare ups since.

I had to pay to see him in Palmerstown but once I did he took pity on me and did the operation on the public list in Tallaght.

I wish you the very best of luck, I know the pain you're going through.

FOREVER21CORK · 21-08-2017 1:17pm

thanks so much pilly, it cant be much worse than the pain I am going through now - I managed to get an appointment with St Vincent's for the 6th of September, its not like any other app for me as I have to drive up and down - the pain of this alone in the car for 6 hours to be seen for ten seconds. cant get any sooner. He is my consultant Derm, I hope to push for the operation then - even though I have been for years I am really going to put my foot down and demand it or go elsewhere
thanks a mill

pilly · 21-08-2017 2:41pm

FOREVER21CORK wrote: »

thanks so much pilly, it cant be much worse than the pain I am going through now - I managed to get an appointment with St Vincent's for the 6th of September, its not like any other app for me as I have to drive up and down - the pain of this alone in the car for 6 hours to be seen for ten seconds. cant get any sooner. He is my consultant Derm, I hope to push for the operation then - even though I have been for years I am really going to put my foot down and demand it or go elsewhere
thanks a mill

Do not leave the office until he agrees to do something. I also used to go to A&E if I was having a particularly bad episode just so they knew the extent of the pain.

FOREVER21CORK · 21-08-2017 7:29pm

pilly wrote: »

Do not leave the office until he agrees to do something. I also used to go to A&E if I was having a particularly bad episode just so they knew the extent of the pain.

Thanks pilly...and thanks for all your help earlier... i am lucky i dont need to go to A&E as my GP is really hands on and lances my lumps whenever he can. ....i did of course end up in A&E alot over the years but theres never much they can do. Thanks again for all your help

lockman · 21-08-2017 7:55pm

fOREVER21CORK wrote: »

Hi All,

I am a 31year old female with stage gazillion of HS, both armpits, thighs, stomach, under breasts and groin for the last 18 years .

I am a very happy person, never really let it get to me and I always exercised, went out dancing etc. which of course was all put on because I was afraid of my life with any sexual relationships, but sadly it is weighing me down the last couple of months now I have come to the end of my strength and I am willing to do just about anything to get rid of this.

I have tried every treatment, antibiotics out there and nothing works for me. I have changed my diet etc. I travel to Dublin bi monthly for appointments with Dr Brian Kirby in St Vincents and every three months to Professor Winters in St Michaels where I get ceton insertion surgery that keeps my tracts open. but I just keep getting flare ups and new lumps, theo nly thing the surgery seems to do is keep the old ones from returning, but there constantly draining and I feel like I smell, I usually never miss work I am really a good patient but the last couple of months I have missed a lot of work and didn't even feel like leaving the house this weekend.

I am very angry with all the doctors because they are very slow to put me on the right medication or perform the right surgery, If I didn't have to go through all the acne medication when I was younger when we knew it wasn't acne, maybe I would be in a better position today. I have gone in front on Dermatology boards since the age of 13, been case studies, guinea pig - everything. I give a lot of blood for research - and the next time I visit Dublin I am giving a bit of my skin for the skin cell research etc. can they not see that after 18 years nothing works for me. I was so happy to hear about Humira when it was approved for HS last year, I am now injecting 12 months with no improvement. I am angry to find out that people have been using Humira for HS since 2011/12, why did they not put me on it then?

Obv being 31 It would be natural for me to be in relationships etc but I am absolutely terrified with someone I actually fancy, someone would think I am diseased. so embarrassed of this condition. something needs to be done. I am now going to push for gland removal surgery, I was told no many times before as it is quite messy and can reverse itself. but If I even got a year pain free I would be getting somewhere. I have come across people on many different forums who have had the operation with very mild HS.

Can anyone tell me where they got the surgery done or how I go about it as I will have to change doctors?

thanks in advance

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.

lockman · 21-08-2017 7:56pm

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/

FOREVER21CORK · 21-08-2017 8:39pm

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 ðŸ˜£ ya i would love a suggestion of a surgeon.... thanks a mill

Vojera · 02-10-2017 7:54pm

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 · 14-12-2017 8:56pm

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 · 23-12-2017 9:35am

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 · 23-12-2017 9:42pm

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 · 24-12-2017 2:59pm

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 · 24-12-2017 6:03pm

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

lockman · 02-02-2018 9:17pm

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 · 13-02-2018 6:06pm

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 · 09-07-2018 7:42pm

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!

Hidradenitis Suppurativa

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