Hidradenitis Suppurativa

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/

Hidradenitis Suppurativa

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