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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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PorridgeHead

cindrella wrote: »

It burst on its own but its still big and hard and full and not draining went to doctor he had a look and said if it gets worse come back normally when it opens it drains but its open and not draining and sore but not as sore as it was

Prof Kirby arranged for Mr. Des Winters to put stitches (Setons) to open and drain my Daughter's sores. It worked. It's not a cure, but it had immediate relief and the sores have stayed at bay with medication.

lockman

See link below for a nice study by a French team looking at the role of bacteria in HS disease development and progression. They used some cutting-edge technologies to try and identify bacteria in more than 100 HS lesions obtained from 80+ HS patients.

http://www.ncbi.nlm.nih.gov/pubmed/25418454

lockman

A few more HS research papers have appeared recently.

The first one, is by a Canadian group and looks at the impact of the condition on the quality-of-life of HS patients:
http://www.ncbi.nlm.nih.gov/pubmed/25432664

The next paper, with free full text access, interestingly reports on a case of complete remission in a patient following treatment with an immunosuppressive drug.
http://www.ncbi.nlm.nih.gov/pubmed/25437996

Finally, a report on HS comorbidities (associated conditions) in a study that involved 2000+ patients.
http://www.ncbi.nlm.nih.gov/pubmed/25440440

Hope all are well.

Pumpkinseeds

That was an interesting post Lockman. I saw my consultant a few weeks ago and as expected he discontinued the Infliximab for the time being. I'm back at Dermatology in a few weeks and they told me last time that there were 2 more immunosuppresants I could try, so it'll be interesting to see how they work. I can't remember the names, but one is only taken once every 3 months. The rheumatologist said that those drugs are used in rheumatology too.

I got my flu jab months ago but haven't had the pneumonia jab that dermatology also wanted me to have, I seem to have a permanent bad cold these days, but at this time of year it's hard to find the time to get to GP's. I'm back in neurology as well the day before Dermatology. Not looking forward to a 4 hour round trip on a bus to spend an hour in a portacabin in Galway to be told bugger all.

lockman

See link below for a recent review in the Dermatology journal of treatment options for HS. According to these authors: We conclude that, in the near future, biological therapy could become an essential tool in the management of cases of HS who have not previously responded to classical treatment.
(Biological therapies include the anti-TNF group of drugs widely used to treat HS).

http://www.ncbi.nlm.nih.gov/pubmed/25472035

lockman

See link below for a recent case report on the successful treatment of HS with Humira. The individual in this report had other complications to deal with, such as psoriatic arthritis and had previously tried numerous antibiotics and other treatments for the HS (e.g. dapsone, oral isotretinoin).

After just 4 weeks of Humira, the HS (and other problems) had all gone into complete remission! Importantly, this multiple-remission continued for the long-term also.

http://www.jaad.org/article/S0190-9622%2814%2902020-9/fulltext

lockman

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.

Gael23

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.

Get a letter from your GP and or Consultant.I haven't been through this so cant offer much advice other than that.

Pumpkinseeds

I had the same problem last time my medical card was up for review. I appealled it and cited all of the consultants that I have to see and the fact that I had regular outpatient appointments as well as day patient appointments. They gave me a discretionary card. I just received my next one last Summer without any questions, which was a relief as I was expecting another battle for it. My GP had told me when my one wasn't renewed that most of his medical card patients cards were being refused automatically. It seems to be standard practice now to not renew medical cards and hope that people won't challenge it. Always appeal.

Gottalovegreys

Hello,

I was referred to general surgery earlier in the year by my GP for what she thought was recurrent folliculitis. I saw the consultant a few weeks ago who diagnosed HS. He said there was nothing surgical at the moment, and that he would refer me to dermatology. He said the dermatologist would probably give me antibiotics for 3 months.

I think my case is a mild one (ie just have one active lump in my groin at the moment, surgeon mentioned sinus tracts). I'm thinking I could be waiting years for Dermatology appt, and wondering if I do need antibiotics maybe I'd be better off seeing a private dermo just to get the prescription? I'm worried that it will get worse if I don't do antibiotics sooner rather than later.

I'm pretty new to all this, a little overwhelmed by all I am reading!!

GLG

lockman

Hi GLG,

Very sorry to hear you have HS.

I appreciate that there is a lot to take in right now, but I'd highly recommend the following (trustworthy) sites:

i) http://www.hsonline.ca, is Canada-specific (i.e they quote a few facts about incidence of HS in the Canadian population) but the site has been designed by HS-sufferers and HS healthcare professionals. There is a section (designed by a praticising dermatologist) on how best to talk to your dermatologist and to try and get the most out of meetings with same. It is a very informative and up-to-date site about all things HS-related.

ii) http://www.hstrust.org; is a UK-based charity set up by HS-sufferers and their families and friends. They are a very helpful group and again this is an up-to-date site about all HS-related things.

Otherwise, feel free to ask anything here or PM me if you'd prefer.

Regarding seeing a dermatologist, afaik dermatologists are in high demand and short supply in this country so you will probably be waiting a bit whether you go private or public. Explore both options.

The fact that you have been diagnosed relatively early should help enormously in managing your condition. Many people go misdiagnosed and undiagnosed for years. I have read that the earlier they diagnose it, the better the outcomes are.

Best wishes

Gottalovegreys wrote: »

Hello,

I was referred to general surgery earlier in the year by my GP for what she thought was recurrent folliculitis. I saw the consultant a few weeks ago who diagnosed HS. He said there was nothing surgical at the moment, and that he would refer me to dermatology. He said the dermatologist would probably give me antibiotics for 3 months.

I think my case is a mild one (ie just have one active lump in my groin at the moment, surgeon mentioned sinus tracts). I'm thinking I could be waiting years for Dermatology appt, and wondering if I do need antibiotics maybe I'd be better off seeing a private dermo just to get the prescription? I'm worried that it will get worse if I don't do antibiotics sooner rather than later.

I'm pretty new to all this, a little overwhelmed by all I am reading!!

GLG

Gottalovegreys

Thanks for your reply and the information Lockman, much appreciated!
Take care,
GLG

lockman wrote: »

Hi GLG,

Very sorry to hear you have HS.

I appreciate that there is a lot to take in right now, but I'd highly recommend the following (trustworthy) sites:

i) http://www.hsonline.ca, is Canada-specific (i.e they quote a few facts about incidence of HS in the Canadian population) but the site has been designed by HS-sufferers and HS healthcare professionals. There is a section (designed by a praticising dermatologist) on how best to talk to your dermatologist and to try and get the most out of meetings with same. It is a very informative and up-to-date site about all things HS-related.

ii) http://www.hstrust.org; is a UK-based charity set up by HS-sufferers and their families and friends. They are a very helpful group and again this is an up-to-date site about all HS-related things.

Otherwise, feel free to ask anything here or PM me if you'd prefer.

Regarding seeing a dermatologist, afaik dermatologists are in high demand and short supply in this country so you will probably be waiting a bit whether you go private or public. Explore both options.

The fact that you have been diagnosed relatively early should help enormously in managing your condition. Many people go misdiagnosed and undiagnosed for years. I have read that the earlier they diagnose it, the better the outcomes are.

Best wishes

Pumpkinseeds

Happy New Year everyone, I hope you all had a pain free Christmas. I'm having all the tests that are done pre-treatment with anti-TNF's again from tomorrow.

:mad: I've got to say it pisses me off. I had the chest X Rays and TB test done in Galway before I started on Immunosuppresants about 3 years ago now but the protocol in Limerick is that I have to have it all done again, even though I'm going on to my 3rd anti-tnf since I've been attending the Limerick dept.

I had Enbrel and Humira which are both injected at home and which I was shown how to do when I was a patient in Galway and which I did for the better part of a year, but with the new anti-tnf the protocol is that I have it done in Limerick, then a nurse comes to my house to do it

, then I get the next one at the hospital. I have to say I think it's a massive waste of resources, money and time.

lockman

Pumpkinseeds wrote: »

Happy New Year everyone, I hope you all had a pain free Christmas. I'm having all the tests that are done pre-treatment with anti-TNF's again from tomorrow.:mad: I've got to say it pisses me off. I had the chest X Rays and TB test done in Galway before I started on Immunosuppresants about 3 years ago now but the protocol in Limerick is that I have to have it all done again, even though I'm going on to my 3rd anti-tnf since I've been attending the Limerick dept.

I had Enbrel and Humira which are both injected at home and which I was shown how to do when I was a patient in Galway and which I did for the better part of a year, but with the new anti-tnf the protocol is that I have it done in Limerick, then a nurse comes to my house to do it, then I get the next one at the hospital. I have to say I think it's a massive waste of resources, money and time.

And many happy returns to you.

Your recent experiences do appear to be a complete waste of resources for all concerned. What is that about?

Hopefully your third TNF-blocker will yield some positive results for you. Please keep us posted.

Pumpkinseeds

lockman wrote: »

And many happy returns to you.

Your recent experiences do appear to be a complete waste of resources for all concerned. What is that about?

Hopefully your third TNF-blocker will yield some positive results for you. Please keep us posted.

Just wondered if you've heard of anybody developing joint pain after stopping Infliximab? It might be totally unrelated but for about 6 weeks I've been getting pain in my left hand and fingers up to my elbow, which I pretty much ignored but over the last few days I've been getting the same pain in some of the fingers in my right hand, which is weird since I never had it before. I'm probably just being neurotic.

lockman

Pumpkinseeds wrote: »

Just wondered if you've heard of anybody developing joint pain after stopping Infliximab? It might be totally unrelated but for about 6 weeks I've been getting pain in my left hand and fingers up to my elbow, which I pretty much ignored but over the last few days I've been getting the same pain in some of the fingers in my right hand, which is weird since I never had it before. I'm probably just being neurotic.

I haven't heard of anyone developing joint pain after stopping, but joint pain is listed as a potential side effect of taking it:

http://www.rxlist.com/remicade-side-effects-drug-center.htm

The site (and other similar ones) does recommend letting your doctor know if joint pain does occur. You might say it to the nurse/doctor next time you see them.

lockman

See link for the abstract of a just-published review on modern HS treatments and thinking on the condition.

http://www.ncbi.nlm.nih.gov/pubmed/25580266

Of particular note is the last line from the paper:
Patients and physicians across multiple specialties must work together to expand awareness of and interest in HS, so that one day, individuals with HS can be freed from this crippling disease.

And they also advocate HS support groups:
Patients can be directed to HS support groups, where they can openly discuss their frustrations, share their experiences in dealing with HS, and band together to advocate for themselves.

lockman

See link for a Dutch surgical team's experience in treating HS. The review looks at almost 500 HS surgeries.

http://www.ncbi.nlm.nih.gov/pubmed/25589154

Of note from this study is the team's finding that the postoperative relapse risk is higher in women.

The team use a surgical procedure known as STEEP (skin-tissue sparing excision with electrosurgical peeling). For more on this procedure, see:

http://www.practiceupdate.com/journalscan/7918

lockman

Hi all,

To anyone who may be interested, an Irish-based HS support group has been set up on facebook. If you use facebook and are interested in finding out more, please pm me.

Hope all are well.

lockman

See link for an abstract of a review paper by regular HS-paper publisher Dr Noah Scheinfeld. In this paper he reviews the use of photodynamic therapy for HS treatment.

http://www.ncbi.nlm.nih.gov/pubmed/25612117

Pumpkinseeds

It would be interesting to see if photodynamic treatment is an option that dermatologists in Ireland would be willing to persue, or if it would be too expensive.

lockman

See link for a paper by some of Europe's leading dermatologists and researchers on HS. Some of these guys have published extensively on HS and are well regarded in the research arena.

http://www.ncbi.nlm.nih.gov/pubmed/25640693

I found the following comment of particular interest:

HS has the highest impact on patients' quality of life among all assessed dermatological diseases.

They also highlight the links between smoking, obesity and HS.

lockman

See link for a paper reviewing the use of laser treatment for HS.

From the conclusions of this paper: This study supports the claim that CO2 laser treatment is an effective modality for recurrent HS lesions in a majority of patients. The authors identified obesity as a risk factor for recurrence. Self-reported satisfaction is high, and only 3 of 58 report no change in the condition. None reported a worsening.

http://www.ncbi.nlm.nih.gov/pubmed/25654196

I know you can (pay to get) laser treatment done in certain parts of the USA but I am curious to know if anyone has been offered laser treatment in Ireland? Or has anyone discussed the possibility with their doctor/consultant?

Pumpkinseeds

I've never been offered laser treatment, but I think it would be very helpful, if for no other reason than hygiene with open wounds/abcesses. Doing regular dressing changes can play havoc with skin and no matter how painful the area I've always had to shave around the armpits to stop the adhesive dressings/tape from catching on hair. The only time I've ever had a dermatologist mention laser hair removal was in Galway University hospital. She breezed in, looked at my groin in disgust then told me that there are places like Therapie who do hair removal..:mad:

Yeah, like any high street chain would even consider treating broken skin let alone stage 3 HS. I was furious with her. She was only in her late 20's/early 30's, but she damn well should adopt a professional approach to treating patients.

Trisha_H

Hi everyone!
I'm 17 years old and I was diagnosed with HS back in December. I had surgery to remove an abscess back in August and I thought that would be the end of it. But it came back in December and I was brought into hospital just after Christmas for IV antibiotics. It came back again about four three weeks ago, only this time it burst. It's affected the courses I was doing but thankfully my teachers are great and they understand. My GP has told me the best we can hope for at this point is that it doesn't keep coming back on a regular basis like it is now. But he's not sure what will happen. I guess I'll have to wait and see what happens once this one heals up...

lockman

Trisha_H wrote: »

Hi everyone!
I'm 17 years old and I was diagnosed with HS back in December. I had surgery to remove an abscess back in August and I thought that would be the end of it. But it came back in December and I was brought into hospital just after Christmas for IV antibiotics. It came back again about four three weeks ago, only this time it burst. It's affected the courses I was doing but thankfully my teachers are great and they understand. My GP has told me the best we can hope for at this point is that it doesn't keep coming back on a regular basis like it is now. But he's not sure what will happen. I guess I'll have to wait and see what happens once this one heals up...

Hi Trisha,

Welcome to the thread. I am very sorry to hear you have HS.

Unfortunately, it is not uncommon for surgery not to work: the condition has a habit of coming back. Surgery can work well in some and not so well in others. I have a good surgeon looking after me and almost all the surgeries done on me have been successful i.e. there have been no recurrences in the areas the surgeon has operated on. My problem is the HS tends to pop up elsewhere on the body after surgeries.

Has your GP mentioned going to see a dermatologist at all? They can help and especially so the earlier you you get to meet them.

There is a lot for you to take in having just recently found out you have HS, but should you have any questions, please feel free to ask here or send a private message.

A couple of good HS websites to look at:
www.hstrust.org (a UK based HS charity);
www.hsonline.ca

Trisha_H

Hi Lockman,

I'm lucky so far, I guess, in the sense I only have it in the one area right now. Touch wood.

My GP mentioned a dermatologist since I've seen one in the past. But he is unsure if they will be able to do anything for me. So the next time I go back with it he's planning on writing a letter to her again. It's just a wait and see what happens kind of thing now.

Thank you for the support. I'm doing my best to learn as much as I can. It's helpful to know what I'm facing. And being able to tell my teachers about it has helped with staying in my classes.

Thanks for the links. I will definitely check them out.

DeLady

I am sick of this illness, thats all....

lockman

Trisha_H wrote: »

Hi Lockman,

I'm lucky so far, I guess, in the sense I only have it in the one area right now. Touch wood.

My GP mentioned a dermatologist since I've seen one in the past. But he is unsure if they will be able to do anything for me. So the next time I go back with it he's planning on writing a letter to her again. It's just a wait and see what happens kind of thing now.

Thank you for the support. I'm doing my best to learn as much as I can. It's helpful to know what I'm facing. And being able to tell my teachers about it has helped with staying in my classes.

Thanks for the links. I will definitely check them out.

Trisha,

Just wanted to add the following: most of what you will read online will be from people who are at their worst. It is in people's nature to complain and so on. One of the things about HS is there seems to be no rhyme or reason to it. What happens to one person may not necessarily happen to someone else. You will read some awful stories but that doesn't mean it will happen to you.

They classify HS in three stages with stage I being the mildest form, to stage III, the most severe form. I think I recall reading that ~75% of people are stage I and most people never progress beyond that. Approx 24% are stage II, and ~1% are stage III.

There is one other site I'd recommend, and that is a US-based not-for-profit organisation called the HS Foundation:
http://www.hs-foundation.org/

Best wishes,

Pumpkinseeds

While HS can be an awful disease, I'm glad that Trish got an accurate diagnosis at such a young age, it can make all the difference treatment wise. Many of us, including myself, went undiagnosed/misdiagnosed for many years. I had my first abcess at about 13 or 14 and it wasn't until I was in my late 20's that I was actually given a name for the disease. So at least the medical profession is becoming more aware of HS.