Hidradenitis Suppurativa

lockman

Seems interest in HS awareness and treatment is growing.

A UK-based company has set up an online HS community, where members can engage and share their HS experiences with one another. Participation is anonymous and participants are paid for their time through Amazon vouchers.

I don't think I can post links here, but if anyone is interested, please PM me and I can send you more details.

I have been participating in this for several months now and have to say I enjoy it immensely. It is interesting to get other's perspectives on all things HS-related. It takes no more than a few minutes (5-10) per week.

stupidskin

I've been part of this online HS group over the past few months also and have found it good (and Amazon vouchers too), how bad

Pumpkinseeds

Do I need Javascript to access it? The link doesn't do anything when I click it.

lockman

See link for a recent paper looking at possible links between HS and inflammatory bowel disease (IBD). The Amercian study looked at almost 700 IBD patients over a 30 year period.

http://www.ncbi.nlm.nih.gov/pubmed/25952308

From the conclusions of the paper:
".... patients with IBD were about 9 times more likely to develop HS than the general population, with a female predisposition."

lockman

Leading HS researcher Prof Gregor Jemec and co-authors have just published a study looking at HS 'disutility' (the disability caused by a disease). There is full free access to the paper but not just yet (probably will be available within a week or two).

http://www.ncbi.nlm.nih.gov/pubmed/25940640

Pumpkinseeds

I was diagnosed with IBS years ago, all it really is is an umbrella term for gastric illnesses that they can't identify. I've had 2 colonoscopies and an endoscopy, all of which were normal. I know that some Dermatologists recommend regular colonoscopies but I don't think that would really benefit anyone tbh.

In my own case I would put tummy problems down to the anti convulsant medications that I've been taking for 30 years. That's before factoring in all of the antibiotics, antimicrobials and painkillers for the HS.

lockman

This paper looks at features of patients with HS and Crohn's disease, a form of IBD.

http://www.ncbi.nlm.nih.gov/pubmed/25956836

Pumpkinseeds

I was tested for Crohns about 15 years ago, was very thankful not to have it as I met someone who does when I was in hospital over night for the test. It's a scary disease. I had private health insurance in those days and you get a lot more investigation as a private patient.

lockman

lockman wrote: »

Seems interest in HS awareness and treatment is growing.

A UK-based company has set up an online HS community, where members can engage and share their HS experiences with one another. Participation is anonymous and participants are paid for their time through Amazon vouchers.

I don't think I can post links here, but if anyone is interested, please PM me and I can send you more details.

I have been participating in this for several months now and have to say I enjoy it immensely. It is interesting to get other's perspectives on all things HS-related. It takes no more than a few minutes (5-10) per week.

Bumping this as still more HS patients, living in Ireland, are needed for this study.

Just to repeat, your participation is anonymous and you are paid for your contributions with Amazon vouchers. It involves answering ~2 questions per week and takes up very little time.

Pumpkinseeds

Since my current plastic surgeon is unwilling to do surgery anywhere below the waist, my dermatologist is considering asking Professor Kirby to see me. I'm just wondering if anyone with stage 3 has had any surgery in the perineal area and if so whether or not it was successful.

lockman

Pumpkinseeds wrote: »

Since my current plastic surgeon is unwilling to do surgery anywhere below the waist, my dermatologist is considering asking Professor Kirby to see me. I'm just wondering if anyone with stage 3 has had any surgery in the perineal area and if so whether or not it was successful.

I've had a few surgeries in the perineal area, with mixed success.

On the right hand side, I've had two operations. One was a breeze: just a few days in hospital with vac pack attached. No grafting done and minimal time afterwards getting dressings done. Importantly, no recurrence since (2011). The second operation went fine. Again just a few days in hospital with vac pack. No grafting done either. However, while recovering I picked up an infection in the area which led to a long and prolonged recuperation: it was 3-4 months of return visits to the hospital for minor procedures (stitching wound back together), regular dressings and various antibiotics regimes before I finally got the all-clear. The worst part of this was the mental toll it had on me. Importanlty, no recurrence of the HS there since (operation in 2012).

Both of the above procedures were done publicly and the care I received was excellent throughout.

About 18 months ago I went private and to a different surgeon to see to the left hand side. I don't think the surgeon was agressive enough with the procedure, as no sooner had the wound healed than the HS had popped up again at the wound margins and close by to the wound. I am glad I tried it anyway as there has been a considerable improvement.

Overall I am glad to have had the operations. Even though the second operation on the right hand side was trying, and the limited success of the left hand side, I am very glad to have tried and I think the physical and mental results today were well worth it.

lockman

Humira has been granted orphan status for the treatment of HS by the US FDA.

AbbVie (NYSE: ABBV) announced that the U.S. Food and Drug Administration (FDA) has granted HUMIRA® (adalimumab) orphan drug designation for the investigational treatment of moderate-to-severe hidradenitis suppurativa (HS) (Hurley Stage II and Hurley Stage III disease), a painful, chronic inflammatory skin disease. AbbVie's supplemental Biologic License Application seeking FDA approval for the use of HUMIRA in patients with moderate-to-severe HS is currently under review with the agency. HUMIRA is not currently approved by regulatory authorities for the treatment of HS.

For more, see:
http://abbvie.mediaroom.com/2015-05-15-AbbVie-Receives-Orphan-Drug-Designation-for-HUMIRA-adalimumab-from-the-U-S-Food-and-Drug-Administration-for-the-Investigational-Treatment-of-Moderate-to-Severe-Hidradenitis-Suppurativa-HS

Pumpkinseeds

Has anyone with Stage 3 tried Acitretin? It was suggested as the next treatment option to me and I was warned categorically by my Dermatologist that I could never risk having children, ever, having taken it. The maternal side of things isn't an issue for us, we've never wanted children and I know from the small amount of reading that I've done on the drug that it's usually only prescribed to women who have had a hysterectomy, because of the serious side effects to babies.

Just wondered really if anyone has tried it and if so how they got on with it.

lockman

lockman wrote: »

Hi all,

A leading pharmaceutical company, with operations in Ireland, has commissioned a HS research project and wants to speak with HS patients.

This will involve two small groups (of 2-3 per group) with one group being all male and the other all female. A facilitator will ask questions as part of the study in a confidential and secure setting.

The study groups are due to take place in a central Dublin city centre location on Tuesday May 12, 2015 in the afternoon and early evening.

If you have a few hours free on that date, and are willing to participate, please PM me and I will supply further details on the study groups and the contact info for the study facilitator.

PS: A gratuity will be paid to all study participants.

I took part in the male study group this past week. The event was attended by 3 male HS sufferers, a study group facilitator and a representative from the pharmaceutcial company sponsoring the event. The event took place in a hotel in Cork and lasted about 2 hours.

I found the event to be a very worthwhile exercise. The facilitator asked us all some general questions (for e.g. how old we were when the symptoms first arrived, the journey we have been on, our experiences with the health system and various doctors and so on). It was amazing how similar all our experiences were, from misdiagnosis through to finally getting a proper diagnosis, the various healthcare professionals we all have had to deal with and the various treatment regimes we have been on.

I personally found it great to be able to speak openly in a private group setting about my HS experiences. It was really great to be able to share my experiences with others and to talk with people who knew and understood what I had been through.

They are still trying to get an all-female group together. PM if interested.

Btw: the good news is that the pharma company involved in this appear to be very interested in HS and are deeply committed to HS research.

lockman

See link below for the abstract of an interesting paper describing the use of an old drug, spironolactone, that was used successfully in ~ 20 female HS patients.

http://www.ncbi.nlm.nih.gov/pubmed/26080895

Spironolactone has been in use since the 1950s, for various different conditions. As it has been in use for so long (the 1950s is a long time ago in the drug world), a lot of knowledge has been built up around its safety profile and its side effects.

Wiki spironolactone entry:
http://en.wikipedia.org/wiki/Spironolactone

More info on the drug:
http://www.drugs.com/spironolactone.html

Might be worth discussing with one's consultant, if nothing else is working.

Trisha_H

Hi everyone.

It's been a while since I posted here. I hope everyone is keeping well.

So I've got my oral hearing next Tuesday for the disability allowance appeal. I'm a little nervous about it. But hoping it goes well. I also saw a dermatologist, who's trying me out on a three month course of antibiotics. So we're hoping this will help me, but nobody is sure right now. Still, I'm keeping my fingers crossed.

Pumpkinseeds

Trisha_H wrote: »

Hi everyone.

It's been a while since I posted here. I hope everyone is keeping well.

So I've got my oral hearing next Tuesday for the disability allowance appeal. I'm a little nervous about it. But hoping it goes well. I also saw a dermatologist, who's trying me out on a three month course of antibiotics. So we're hoping this will help me, but nobody is sure right now. Still, I'm keeping my fingers crossed.

I'll keep my fingers crossed for you Trisha. Remember, you really need to swallow your pride and lay it on with a trowel at these appeals. Nobody else will fight your corner for you. Just describe the gruesomeness of the disease in graphic detail for them.:D

lockman

Pumpkinseeds wrote: »

I'll keep my fingers crossed for you Trisha. Remember, you really need to swallow your pride and lay it on with a trowel at these appeals. Nobody else will fight your corner for you. Just describe the gruesomeness of the disease in graphic detail for them.:D

+1 to the above. As Pumpkinseeds says, give it everything you have and don't hold back in telling them about how it can impact on your life.

The very best of luck Trisha, will be thinking of you.

lockman

lockman wrote: »

Humira has been granted orphan status for the treatment of HS by the US FDA.

AbbVie (NYSE: ABBV) announced that the U.S. Food and Drug Administration (FDA) has granted HUMIRA® (adalimumab) orphan drug designation for the investigational treatment of moderate-to-severe hidradenitis suppurativa (HS) (Hurley Stage II and Hurley Stage III disease), a painful, chronic inflammatory skin disease. AbbVie's supplemental Biologic License Application seeking FDA approval for the use of HUMIRA in patients with moderate-to-severe HS is currently under review with the agency. HUMIRA is not currently approved by regulatory authorities for the treatment of HS.

For more, see:
http://abbvie.mediaroom.com/2015-05-15-AbbVie-Receives-Orphan-Drug-Designation-for-HUMIRA-adalimumab-from-the-U-S-Food-and-Drug-Administration-for-the-Investigational-Treatment-of-Moderate-to-Severe-Hidradenitis-Suppurativa-HS

Just following up on the above, in the past few day it has been announced that Humira has received approval for HS treatment by the European Medicines Agency.

Press release

26/06/2015
First medicine recommended for approval for hidradenitis suppurativa

Treatment of this serious skin condition to be added to Humira’s approved uses

The European Medicines Agency (EMA) has recommended extending the use of Humira (adalimumab) to include treatment of adults with active moderate to severe hidradenitis suppurativa (acne inversa), who have failed to respond to conventional systemic treatments. Hidradenitis supportiva is a chronic skin disease that causes abscesses and scarring on the skin – usually around the groin, buttocks, breasts and armpits. Humira is the first medicine that is recommended for approval for the treatment of this disease in the European Union (EU).

For more, see:
http://www.ema.europa.eu/ema/index.jsp?curl=pages%2Fnews_and_events%2Fnews%2F2015%2F06%2Fnews_detail_002354.jsp&mid=WC0b01ac058004d5c1

lockman

lockman wrote: »

Hi all,

Would be grateful to hear from anyone who has had similar experience.

Luckily I've had a medical card for the past few years and recently came up for review. They means-tested me and decided I exceed the financial threshold.

I will be appealing this decision and will be citing the HS as a condition that places excessive hardship on me, with the associated costs of HS-meds, trips to hospitals and clincis for treatments and doctor appointments and indeed the trips for surgeries (which I have roughly once per year).

Would love to hear from anyone (either here or by PM) who has been through this experience and might have cited their HS as a reason to have their card reinstated/continued.

Thanks in advance.

Hi all,

Just to update you. After appealing the decision to cancel my medical card, I have been awarded one again.

Depsite just exceeding the financial cut-off points, in my appeal I emphasized how much HS impacts on my life, especially so from a financial point of view. Since they cancelled the card, I have spent over €1000 on HS-related items (prescription drugs, trips to hospital, visits to my GP etc) and was able to back this up with receipts etc.

In case any of you find yourselves in a similar situation my advice would be to reapply, and reapply again and again.

lockman

Update.

As of today (July 30th, 2015), AbbVie have announced that their product Humira has been approved for the treatment of moderate to severe HS. This is excellent news for those of us with HS. With this development, hopefully other companies will take notice of HS and intensify interest and research on the condition.

- Decision marks first and only medication approved for adults with hidradenitis suppurativa (HS)

- HS is a painful, chronic inflammatory skin disease estimated to impact 1 percent of the adult population worldwide

NORTH CHICAGO, Illinois, July 30, 2015 /PRNewswire/ -- AbbVie (NYSE: ABBV), a global biopharmaceutical company, today announced that HUMIRA® (adalimumab) is approved for the treatment of active moderate to severe hidradenitis suppurativa (acne inversa) in adults with an inadequate response to conventional systemic HS treatment. HUMIRA is now the first and only medication approved for HS in the European Union.

For more, see:
http://www.prnewswire.co.uk/news-releases/humira-adalimumab-approved-by-european-commission-for-moderate-to-severe-hidradenitis-suppurativa-hs-519803891.html

Moyglish

lockman wrote: »

Update.

As of today (July 30th, 2015), AbbVie have announced that their product Humira has been approved for the treatment of moderate to severe HS. This is excellent news for those of us with HS. With this development, hopefully other companies will take notice of HS and intensify interest and research on the condition.

- Decision marks first and only medication approved for adults with hidradenitis suppurativa (HS)

- HS is a painful, chronic inflammatory skin disease estimated to impact 1 percent of the adult population worldwide

NORTH CHICAGO, Illinois, July 30, 2015 /PRNewswire/ -- AbbVie (NYSE: ABBV), a global biopharmaceutical company, today announced that HUMIRA® (adalimumab) is approved for the treatment of active moderate to severe hidradenitis suppurativa (acne inversa) in adults with an inadequate response to conventional systemic HS treatment. HUMIRA is now the first and only medication approved for HS in the European Union.

For more, see:
http://www.prnewswire.co.uk/news-releases/humira-adalimumab-approved-by-european-commission-for-moderate-to-severe-hidradenitis-suppurativa-hs-519803891.html

Anyone got any estimates as to when will this be available to get on prescription from GP's in Ireland?

lockman

Moyglish wrote: »

Anyone got any estimates as to when will this be available to get on prescription from GP's in Ireland?

As far as I know, for the time being only specialists i.e. consultant dermatologists, will be allowed to prescribe it.

lockman

See link for a case report on a new surgical technique for HS, that uses 'setons' to help drain abscesses -the link brings you to the paper abstract (or summary) but click the link to the pdf and you will get full access to the paper.

http://www.hindawi.com/journals/cris/2015/369657/abs/

A poster on this thread sometime ago mentioned this technique was used on a family member with HS, here in Ireland.

lockman

See link for the latest HS research from Prof. Kirby's group. Increasingly HS is being thought of as an autoimmune disease, and this research looks at specific parts of the immune system in HS patients, and how it appears that improper regulation of these specific parts of the immune system may play a role in the disease.

http://www.ncbi.nlm.nih.gov/pubmed/26282467

lockman

http://www.irishskinfoundation.ie/hs

lockman

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

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.

Good news.

Just wish to add that, following a query made to St. Vincent's Dept. of Dermatology, they have confirmed that as the HS clinic is part of a public dermatology service, there is no cost associated with this service.

Also, there is no specific catchment area involved - anyone from any part of the country can attend this clinic. All you need is a letter of referral from your GP.

lockman

Hello All,

On the morning of saturday, January 30, 2016, some HS patients are going to meet in a central Dublin hotel from 10:30-13:00 to discuss their experiences of living with HS, and to discuss the possibility of forming an HS Support Group (with a view to holding regular meetings).

We also hope to have some guest speakers along (healthcare professionals with interests in HS etc.).

So, if you are free to come along, even for just a few minutes, or if you want anymore details of the event, please send a PM to me here for location details etc..

lockman

lockman wrote: »

Hello All,

On the morning of saturday, January 30, 2016, some HS patients are going to meet in a central Dublin hotel from 10:30-13:00 to discuss their experiences of living with HS, and to discuss the possibility of forming an HS Support Group (with a view to holding regular meetings).

We also hope to have some guest speakers along (healthcare professionals with interests in HS etc.).

So, if you are free to come along, even for just a few minutes, or if you want anymore details of the event, please send a PM to me here for location details etc..

Please follow this link for details of the HS community meeting:
http://irishskinfoundation.ie/news/detail/first-hs-community-meeting-to-be-held-in-january-2016