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Hidradenitis Suppurativa

lockman

Hi All,

Was diagnosed with hidradenitis suppurativa (HS) about 3 years ago. Have had 2 operations so far (armpits) and am currently awaiting a third op (groin region).

Just wondering if there are many other HS sufferers out there, how long you have had it, therapies tried, surgeries etc, alternative treatments, and the like.

Regards,

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lockman

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

riddles

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

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/

lockman

https://www.nobsabouths.com/

lockman

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

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

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

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

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

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

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.

pilly

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

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

lockman

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

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.

Vojera

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

lockman

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

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

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.

lockman

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.

pilly

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

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

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

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

lockman

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

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

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

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

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

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.