Hidradenitis Suppurativa

lockman · 19-06-2013 2:06pm

Pumpkinseeds wrote: »

I'm waiting to have infliximab infusions and I'm just wondering if anyone else has had them and if so what their experiences where. I've tried the Humira injections and they haven't helped. My Dermatologist has told me that the infliximab infusions are my last option on what was a very short list of options.

Hi,

I've been receiving Infliximab since early 2010 and it has made a huge positive difference to my quality of life.

Prior to starting on it, I was barely able to walk due to having a severe dose of HS in the groin and inner thigh regions.

It took a while for the infliximab to kick in (~9-12 months or so) but it has been of major benefit. I still get lesions, but they are far less troublesome, less painful and compared to life pre-infliximab, there is a lot less blood/ooze coming from them.

I now walk miles (and have even started running) every day. I also swim regularly (which wasnt an option before infliximab). In addition to the infliximab, i have made some lifestyle changes: quit smoking, lost some weight and so on but i think the infliximab is the main cause of all the positive effects outlined above. I haven't had any significant negative side effects comonly associated with infliximab.

Best of luck and i hope you start it soon. Different strokes and all that but if you do start on it, I hope you get some benefit from it like I have.

lockman · 31-07-2013 3:45pm

Hello all,

An interesting paper has just been published by a French group in the journal Surgery regarding HS. The group report a possible link between brewer's yeast, wheat and HS.

I dont have full access to the paper yet to properly assess the paper but here is a link to the abstract/summary:

http://www.ncbi.nlm.nih.gov/pubmed/23891479

A few things to note about the paper:

i) A very small group of patients were involved (12) in this study but the authors do suggest similar studies with larger numbers are needed.

ii) All patients had an immune reaction to brewer's yeast and wheat.

iii) All patients underwent surgery in the armpit/perianal areas followed by a 12-month brewer's yeast-free diet (including beer). They were monitored closely over the course of a year.

iv) From the results section: The diet demonstrated immediate stabilization of their clinical symptoms, and the skin lesions regressed over the 12-month treatment period........The patients also demonstrated a return of their quality of life and activities, including the reestablishment of sexual activity in the patients with inguinal and perigenital lesions.

v) From the paper's conclusions: Surgery followed by the elimination of the foods containing or made with the yeast resulted in a rapid stabilization of the dermatologic manifestation and a slow, but complete, regression of the skin lesions within a year

Pumpkinseeds · 01-09-2013 11:08pm

I'm just wondering if anyone with stage 3 has tried Embrel? My dermatologist in Galway referred me to Limerick as he wanted me to start Infliximab infusions and Limerick would be closer to home for me than Galway.

I saw my new Dermatologist last week and I'm very unimpressed. He wanted to start me on antibiotics, the disease is way past that in my case. Then he suggested Embrel. My derm in Galway had put me on Humira, which didn't help me and I remember him saying he didn't feel Embrel would work for me.

I pointed all of this out to the new derm who then started talking about how Limerick paid Galway as Limerick used to only have 1 dermatologist. That did not answer my direct question as to why he was going to use Embrel rather than start the Infliximab infusions, given that the Infliximab is the sole reason for my referal to Limerick.

He ordered a lot of blood tests and when I went to have the blood samples taken that day at the hospital the woman taking the blood had to go and check some of the tests he'd ordered. Some couldn't be done as I wasn't fasting and most weren't even on the right forms:mad:

He's put me on an antibiotic combination for 3 weeks then I have another outpatient appointment with him and he wants to start the Embrel.

Normally I'm a no nonsense kind of woman with a low bullsh*t tolerance but I'm so worn out and worn down with all of this at the moment I'm not sure what to do.

Basically I don't want the Embrel, I was referred for Infliximab infusions and I feel like I'm being fobbed off with an inferior treatment. I'm also a bit freaked out and horrified at the list of side affects of Embrel

PorridgeHead · 10-09-2013 7:48pm

Hi Lockman and everyone.

I want to give you a HEADS UP on a NEW TREATMENT for HS.:eek:

Our Daughter is 16 and has stage 3 HS, and has for several years. She is profoundly Intellectually Disabled and wears nappies 24/7/365.

As a result, Skin Graft is not a viable option for her.

We recently changed Dermatologist Consultant to Prof. Brian Kirby in St. Vincents Private Hospital (yeah, PVT Med Ins helps). We tried several combinations of drugs, and generally it has brought the HS into a manageable condition.

However, Prof. Kirby then brought in a Colleague, Mr. Des Winter (Consultant General / Laparoscopic / Gastrointestinal Surgeon).

The other day he performed an "Insertion of multiple Setons". Basically he threads stitch line through the tracts to allow them to drain and then heal. It was not too invasive a procedure. In and out in 1 day. They seem to think that, with continued use of antibiotics, this will provide reasonable clearance of the HS issues for quite some time.

For all you guys with HS, I fully appreciate what you go through. I thought you might want to research this option and see if it might work for you.

Regards
Daddy Dave.

Rebeleen · 11-09-2013 2:46pm

Hello all.
Just wondering if anyone has tried a paleo diet to help their HS. Am trying to try it at the moment and am having some success. Finding it hard to keep a food diary though. I came across a girl in the states - primal girl - who is has been in remission for a few years now basically through her diet. She has a book coming out on HS the end of this month.

lockman · 15-09-2013 2:40pm

PorridgeHead wrote: »

Hi Lockman and everyone.

I want to give you a HEADS UP on a NEW TREATMENT for HS.:eek:

Our Daughter is 16 and has stage 3 HS, and has for several years. She is profoundly Intellectually Disabled and wears nappies 24/7/365.

As a result, Skin Graft is not a viable option for her.

We recently changed Dermatologist Consultant to Prof. Brian Kirby in St. Vincents Private Hospital (yeah, PVT Med Ins helps). We tried several combinations of drugs, and generally it has brought the HS into a manageable condition.

However, Prof. Kirby then brought in a Colleague, Mr. Des Winter (Consultant General / Laparoscopic / Gastrointestinal Surgeon).

The other day he performed an "Insertion of multiple Setons". Basically he threads stitch line through the tracts to allow them to drain and then heal. It was not too invasive a procedure. In and out in 1 day. They seem to think that, with continued use of antibiotics, this will provide reasonable clearance of the HS issues for quite some time.

For all you guys with HS, I fully appreciate what you go through. I thought you might want to research this option and see if it might work for you.

Regards
Daddy Dave.

Hi Dave,

Thanks for posting this bit of information. The setons sounds like a promising treatment option for those with severe HS. And very impressive that she was done in a day. When getting skin grafts, it can result in a prolonged hospital stay.

I am delighted to hear your daughter has had this procedure done. Hopefully it will help her out a bit and give her some respite from the HS. Please do keep us posted as to how it all pans out.

Best wishes,

Pumpkinseeds · 21-09-2013 8:59pm

I was prescribed Enbrel last Friday, when I was using Humira last year I was given a starter pack for it that included a phone number for the company that they use to deliver and collect the sharps bin. I didn't get one for the Enbrel on friday. Does anyone have a number for the company that delivers and collects the Enbrel sharps bin?

Pumpkinseeds · 09-10-2013 6:33pm

I've been on Enbrel for 3 weeks now and I'm getting a constant tingling in my left arm and fingers, I also feel a bit light headed and clumsy. Has anyone else experienced this?

laylaw · 18-10-2013 2:43pm

Hi all, i'm so glad i came across this thread. I was just diagnosed with HS last week, although i've been suffering for a few years. I'm currently 24, and this diagnosis has definitly knocked the wind out of me.

It took me years to gain courage to see my doctor about it, (currently in both armpits) and from reading other people's stories I guess i'm lucky that my doctor was able to diagnose it within a month of my initial visit.

I have an appointment coming up soon in vincents and i'm not quite sure what to expect. As far as i know its just a consultation to asses the situation, but i'm quite nervous about it.

Another thing i'm anxious about is the social aspects of this condition, how do i tell my family i have it? (They have had no idea about my suffering for years) Am I to wear clothes with sleeves for the rest of my life? What can i use instead of deoderants and whatnot.

I don't think i've ever been upset about anything in my life as much as i am about this, and to learn that there is currently no cure doesn't help. How or what is the best way to come to terms with this, as i'm really struggling with it.

Pumpkinseeds · 22-10-2013 8:04pm

laylaw wrote: »

Hi all, i'm so glad i came across this thread. I was just diagnosed with HS last week, although i've been suffering for a few years. I'm currently 24, and this diagnosis has definitly knocked the wind out of me.

It took me years to gain courage to see my doctor about it, (currently in both armpits) and from reading other people's stories I guess i'm lucky that my doctor was able to diagnose it within a month of my initial visit.

I have an appointment coming up soon in vincents and i'm not quite sure what to expect. As far as i know its just a consultation to asses the situation, but i'm quite nervous about it.

Another thing i'm anxious about is the social aspects of this condition, how do i tell my family i have it? (They have had no idea about my suffering for years) Am I to wear clothes with sleeves for the rest of my life? What can i use instead of deoderants and whatnot.

I don't think i've ever been upset about anything in my life as much as i am about this, and to learn that there is currently no cure doesn't help. How or what is the best way to come to terms with this, as i'm really struggling with it.

First take a breath:) I'm 40 and I've had it since I was in my early teens. Now that you've had the diagnosis you can start to get the right treatment from the Dermatologist that you'll be seeing. HS is a disease that can make you feel very self-concious and embarrassed but you really should try to stay positive.

I have stage 3 HS, the nastiest stage, but not everyone gets to that stage. It affects my armpits, groin, and bottom. Thankfully I have a wonderful and very supportive husband. There are a lot of treatments available and while at the moment there isn't a cure, there are a lot of treatment options to slow things down.

Usually Dermatologists will start with the less invasive treatments such as long courses of antibiotics/antimicrobials. There's also roaccutane, which a lot of people find helpful, I've never used it, there are anti-tnf treatments for more severe stages, at the moment I'm on my 5th week of an anti=tnf called Enbrel.

Lean on your family and accept their support, it's very easy to grin and bear it but you really shouldn't feel embarrassed and they might be relieved to find out whats wrong, often family worry more when they suspect somethings wrong but they aren't told what.

I buy a bottle of Hibiscrub from the chemist and use it to wash infected areas. I don't use deoderant on infected areas but you can spray it elsewhere and also use natural products like teatree oil range. I could go on and on but I'll leave it at that for now. If you have anything you'd like to ask or you just need to vent some steam just pm me:)

lockman · 22-10-2013 9:41pm

laylaw wrote: »

Hi all, i'm so glad i came across this thread. I was just diagnosed with HS last week, although i've been suffering for a few years. I'm currently 24, and this diagnosis has definitly knocked the wind out of me.

It took me years to gain courage to see my doctor about it, (currently in both armpits) and from reading other people's stories I guess i'm lucky that my doctor was able to diagnose it within a month of my initial visit.

I have an appointment coming up soon in vincents and i'm not quite sure what to expect. As far as i know its just a consultation to asses the situation, but i'm quite nervous about it.

Another thing i'm anxious about is the social aspects of this condition, how do i tell my family i have it? (They have had no idea about my suffering for years) Am I to wear clothes with sleeves for the rest of my life? What can i use instead of deoderants and whatnot.

I don't think i've ever been upset about anything in my life as much as i am about this, and to learn that there is currently no cure doesn't help. How or what is the best way to come to terms with this, as i'm really struggling with it.

Hi laylaw,

Sorry to hear of your diagnosis.

Glad that you found this thread. I just wanted to add a little to what Pumpkin Seeds has said.

I was also too embarassed to go to see my GP for a long time. Wish i'd done it sooner rather than later. Rest assured that the people you will get to see at St Vincent's are there to help you, and they will have experience in treating this condition. No need to be nervous in meeting and seeing them. They are professionals and will do their best to aid and assist you.

PS has outlined some of the main treatment options available. Like PS, I am stage III and in recent years seem to have hit upon treatments and lifestyle changes that are making a real difference to my life, so much so that besides the HS, I havent felt this good in a long time.

[As an aside, ~75% of HS patients are stage I, ~24% are stage II and ~1% are stage III. Many people at stage I never progress beyond that].

With respect to telling people, I am very open about my HS with those near and dear to me, and you will probably be surprised by how people react to it. All those I have told are very supportive and try and help in whatever way they can.

PS mentioned tea-tree oil products and Hibiscrub - these work well for me too and indeed for many others with HS.

If you want to pm me and ask anything, please feel free to do so,

Best wishes,

meathawk · 14-12-2013 3:22am

Hey, I've been on the gluten free diet for about 5 months now having suffered from Chronic HS for about 3 years in both armpits and in the perianal area. After switching to a strict GF diet all clinical symptoms of HS have pretty much vanished. I do however have some scarring and one or two sinus tracts that are finally completely inactive. I still smoke and this does not seem to affect my condition in any way.

Honestly, please consider a gluten free diet. It has literally given me back control of my life. It would appear that, whatever way my digestive tract deals with gluten, it alters normal skin cell function at sites of apocrine glands and this causes the initial lump which then subsequently turns into a cyst. Once gluten was eliminated, the lumps slowly, but surely started to become smaller and I have not had a flare up since. Feel free to ask me any questions!

I would also like to add that I was on the Clindamycin and Rifampicin combo for three months and that was by far the biggest mistake of my life. For several months my digestive system was badly altered (quite possibly because of the clindamycin) and that course of treatment was entirely not worth it and I barely saw any clinical improvement. Infliximab was the next option but immuno-suppression scared the hell out of me so in my last hope I strictly removed all traces of gluten from my life. I know it's situation dependent and everyone has different factors affecting their condition, but it was literally that simple to end my battle with HS.

lockman · 20-12-2013 9:26pm

Hi Meathawk,

It is refreshing to read a positive story in relation to HS. Delighted to you took the time to share your story with us all. And fingers crossed that you will stay in remission for a long time.

As you alluded to, different strokes for different people and all that, but had you some food allergy testing done prior to going on the gluten-free diet? The paper mentioned previously in post #153 does mention some potential food triggers for HS. Did you lose any weight when switching to the gf-diet? (I ask this as many medics, books, papers,websites etc will advocate weight-loss as a measure to help alleviate the symptoms of the condition).

Do please keep us posted as to how you get on.

Best wishes,

meathawk wrote: »

Hey, I've been on the gluten free diet for about 5 months now having suffered from Chronic HS for about 3 years in both armpits and in the perianal area. After switching to a strict GF diet all clinical symptoms of HS have pretty much vanished. I do however have some scarring and one or two sinus tracts that are finally completely inactive. I still smoke and this does not seem to affect my condition in any way.

Honestly, please consider a gluten free diet. It has literally given me back control of my life. It would appear that, whatever way my digestive tract deals with gluten, it alters normal skin cell function at sites of apocrine glands and this causes the initial lump which then subsequently turns into a cyst. Once gluten was eliminated, the lumps slowly, but surely started to become smaller and I have not had a flare up since. Feel free to ask me any questions!

I would also like to add that I was on the Clindamycin and Rifampicin combo for three months and that was by far the biggest mistake of my life. For several months my digestive system was badly altered (quite possibly because of the clindamycin) and that course of treatment was entirely not worth it and I barely saw any clinical improvement. Infliximab was the next option but immuno-suppression scared the hell out of me so in my last hope I strictly removed all traces of gluten from my life. I know it's situation dependent and everyone has different factors affecting their condition, but it was literally that simple to end my battle with HS.

mossie11 · 21-12-2013 5:44pm

mossie11 wrote: »

Hi, just an update: had my Operation and Graft yesterday, it seems to have gone ok, just thinking how times change, I had a similar procedure done 20 years ago approx. I was in hospital for 3 weeks afterwards,this time I was admitted on Wednesday evening, had Operation 10 am Thursday and discharged at 4 pm same day and told to come back to a wound dressing clinic on Tuesday, which is difficult as I live about 100 km from the Hospital. Oh well at least it means I am on the road to recovery.

Hi, it is now over two years since I had this procedure and I am delighted to say everything is still great, I realised a couple of months ago I was actually applying deodorant to both armpits for the first time in years.
So to everyone on this site,do not let this condition get you down as it may not last forever.

Pumpkinseeds · 21-12-2013 10:58pm

That's great Mossie11. I had that op in 2008 and I've had no problems in that area since then. Like you I spent 3 weeks in hospital. I was fortunate enough to have a public nurse come to my home to do the dressing changes though.

lockman · 22-12-2013 2:22pm

Great stuff Mossie. Delighted to hear you are doing well.

mossie11 wrote: »

Hi, it is now over two years since I had this procedure and I am delighted to say everything is still great, I realised a couple of months ago I was actually applying deodorant to both armpits for the first time in years.
So to everyone on this site,do not let this condition get you down as it may not last forever.

meathawk · 23-12-2013 5:19am

lockman wrote: »

Hi Meathawk,

It is refreshing to read a positive story in relation to HS. Delighted to you took the time to share your story with us all. And fingers crossed that you will stay in remission for a long time.

As you alluded to, different strokes for different people and all that, but had you some food allergy testing done prior to going on the gluten-free diet? The paper mentioned previously in post #153 does mention some potential food triggers for HS. Did you lose any weight when switching to the gf-diet? (I ask this as many medics, books, papers,websites etc will advocate weight-loss as a measure to help alleviate the symptoms of the condition).

Do please keep us posted as to how you get on.

Best wishes,

So, it had only really clicked in my head after reading that paper about brewer's yeast over the summer that roughly half of my father's siblings are confirmed coeliacs. So, I rang my mother and sort of generally poked at the idea if she had noticed anything strange in relation to gluten/wheat intake when I was a kid. She told me that I had skin rashes constantly from eating wheatabix and that I had to be weened off and on it from time to time. Then I got an allergy test and tested positive for coeliac disease in August of this year.

Interestingly, my dad's brother also had hidradenitis suppurativa and attributed beating the disease to a rather strange antibiotic called dapsone used to treat leprosy - a study can be viewed here about its efficacy.

At the same time, when he started the dapsone treatment, he also had just been diagnosed with coeliac and strictly gave up gluten. The variability of results and overall acceptance that dapsone is rather ineffective in treating the condition made me more confident to go full force on this gluten free diet. Seemingly, whatever mechanism driving HS in my family stems from gluten. This has been confirmed twice since I started the diet where I unknowingly ate something that contained gluten in it (malt vinegar, who knew?) and I would get the beginnings of a flare up (small lump forming underarm that had previously been troublesome but recently dormant) but would dissipate over the next 2 days with no discharge or lesion generation.

I would like to say that I've always been a healthy weight and have still managed to lift and make muscle gains over the course of my HS battle (yeah, it was really difficult to get to a gym in the midst of a heavy 4-5 day flare up). Unfortunately for me, despite finding my triggers, I know I still have this condition and I know that it can come back in an instant if I make a dietary mistake. Moreover, I was the kind of guy who could not stand having active boils under my arms so I constantly would use a 2 prong fork and burst them myself roughly once a week under my right arm and this has left me with significant, permanent scarring. I guess it's a constant reminder of the pain (unbeknownst to my peers) I suffered in my late teens and early twenties.

Just to add finally, I have had 3 surgeries back when I was 19/20 on my inner thigh, under my right arm and at the base of my spine (pilonidal sinuses arguably could be grouped with HS as the bundle of hair/initial dormant sinus theory has been largely disproved). At my worst, I was a solid stage 2 and was nearing stage three due to my left underarm.

I say all of this just because, a lot of people have (for whatever reason) discredited the gluten-free rationale and while I know it won't specifically work for every sufferer, for possibly many readers of this thread it could make a difference. For me, it gave me my life back.

Feel free to ask any questions, I am all ears.

Steve

lockman · 02-01-2014 7:17pm

I just came upon this excellent freely accessible review of conventional medical treatments for HS in an online dermatology journal:

http://escholarship.org/uc/item/5vw402nf

It was published in April 2013 and it is very up-to-date on most treatments used for the condition. It gives a great overview of most HS drug therapies and may be useful to those contemplating certain treatment options.

It was written by a New York based clinician and is based on his experience in treating ~350 HS patients over the years. In many instances, he relates his own clinical experiences in treating patients with various drugs.

Pumpkinseeds · 02-01-2014 8:49pm

lockman wrote: »

I just came upon this excellent freely accessible review of conventional medical treatments for HS in an online dermatology journal:

http://escholarship.org/uc/item/5vw402nf

It was published in April 2013 and it is very up-to-date on most treatments used for the condition. It gives a great overview of most HS drug therapies and may be useful to those contemplating certain treatment options.

It was written by a New York based clinician and is based on his experience in treating ~350 HS patients over the years. In many instances, he relates his own clinical experiences in treating patients with various drugs.

That was a very interesting article, thanks for posting it. Hee, reading it reminded me of pretty much every antibiotic and treatment I ever had. I've never had topical painkillers or had laser hair removal suggested, although I always felt that combining laser hair removal with other treatments would be very helpful. The only time it was mentioned was in passing by an uppity young madam on the Derm team in Galway who seemed shocked that I hadn't had it done in a high street salon.

Can you imagine turning up at Therapie or some other hair removal salon with stage 3 HS and asking them to treat you, not a snowballs chance in Hell, even if you weren't too embarrassed to show them the affected areas.

lockman · 03-01-2014 8:03pm

Pumpkinseeds wrote: »

TI've never had topical painkillers or had laser hair removal suggested, although I always felt that combining laser hair removal with other treatments would be very helpful.

The laser treatment makes some sort of sense alright, if one can say that about a condition which appears to have no rhyme or reason. This crowd (a commercial enterprise mind) advocate it and claim to have a very high sucess rate with using lasers to treat HS:

http://www.hs-institute.com/

Btw, I found it to be a very informative and useful site.

Pumpkinseeds wrote: »

Can you imagine turning up at Therapie or some other hair removal salon with stage 3 HS and asking them to treat you, not a snowballs chance in Hell, even if you weren't too embarrassed to show them the affected areas.

Not being in a position to fly off to the US for personalised laser treatment, I had contemplated the above, but being a bloke with stage III HS in some rather intimate areas, I decided not to for fear of being arrested and/or branded a pervert.

Pumpkinseeds · 03-01-2014 8:54pm

It isn't as if Dermatology couldn't try laser treatment. I know Galway have a laser unit in the Derm dept. It might also help with a lot of the sinus tracts that develop with stage 3. Anything that could potentially help or at least ease the condition is worth a try. I didn't find Dapsone very useful at all, it made me feel very ill and Gluco, forget the full name, didn't work at all either.

I was told to use the Hibiscrub and found it useless even though one of the Derms in Galway insisted that it's great, I just found it to irritate things. I know that they know very little about the disease, but they can be so bloody patronising in order to gloss over the fact that they don't know much about it.

I saw my plastic surgeon last week and as expected, he told me to go ahead with the Infliximab infusions and said that he'd do the axilla if the infusions don't work. So that's something anyways.

lockman · 05-03-2014 6:56pm

A new study has been published on the possible link between HS and obesity. A link to the paper abstract can be found here:

http://www.ncbi.nlm.nih.gov/pubmed/24577555

The paper is entitled:
"The Influence of Body Weight on the Prevalence and Severity of Hidradenitis Suppurativa"

Note that free, full-text access to the entire paper is available by clicking on the links in the above link.

It is worth mentioning that the last author on this paper is GBE Jemec, one of the world's leading authorities on the condition. Not that that necessarily makes everything he says about HS to be true, but his name does carry some authority in HS research.

lockman · 12-03-2014 7:24pm

Hi all,

A paper has just been published in the British Journal of Dermatology suggesting a possible link between HS and Vitamin D.

The abstract of the paper can be found here:
http://www.ncbi.nlm.nih.gov/pubmed/24593276

The full paper title is:
'Vitamin D Status in Hidradenitis Suppurativa'

The abstract, unfortunately, does not give too much details on the paper's contents though. I will post more as soon as I've read the paper in full.

A point of interest in relation to this paper: it was published by an Irish-based research group!

It is heartening to see some Irish-based clinicians and scientists conducting some research on the condition. The group is led by well-known dermatologist Prof Brian Kirby of St Vincent's in Dublin, and also includes researchers from other Irish hospitals. Prof Kirby has previously published on HS.

Pumpkinseeds · 21-03-2014 11:05pm

It was interesting to read Meathawks post. My dad gave up gluten about a year ago. For some reason it started making him really ill. I'm always tempted to give up bread. But I'm a vegetarian and bread is kind of a staple for lunches. I did give it up for 6 months about 10 years while I was still carnivorous. I wanted to lose some weight and I lost 6 stone in 6 months on Atkins.

I had hoped that losing a lot of weight would improve the HS, in my case it didn't, but I was already at stage 3 and in so much pain that I wasn't getting too much sleep. I've found that lack of sleep and stress are major triggers for flare ups, and of course lack of sleep and stress go hand in hand.

My consultant made the referral for my infliximab infusions back in December and told me I should be seen fairly quickly. When I saw him last month he told me that if I hadn't heard from the other hospital within the following 3 weeks I should phone the hospital and as he put it 'tell them you're in bits and you really need to be seen urgently'.

I really really hate having to beg for treatment, but I have to bite the bullet and do it next week.

laylaw · 01-04-2014 1:54am

I bawled my eyes out reading back over this thread. I last posted on here 6 months ago. Unfortunately for me things have only gotten worse. I feel like I'm getting nowhere medically. My doc and a consultant from Vincents have both basically told to "deal with it, take some neurofen". That's the best advice I've been able to access. Mentally, I'm going to counselling to try and deal with it. My own attempt to try lessen the stress. I've had 3 weeks in the last 6 months where I've not been able to move my arm. I'm considering moving home to my dad's out of fear that I won't be able to take care of myself living alone.

I've seen a few posts about support groups in ireland. Just wondering if anyone knows of any that meet in person. I feel like meeting even just one other person in person who has this condition might help me.

You're all amazing people here. I'm so sorry so many people go through this. I wouldn't wish it on my worst enemy.

lockman · 03-04-2014 3:57pm

laylaw wrote: »

I've seen a few posts about support groups in ireland. Just wondering if anyone knows of any that meet in person. I feel like meeting even just one other person in person who has this condition might help me.

You're all amazing people here. I'm so sorry so many people go through this. I wouldn't wish it on my worst enemy.

Laylaw, I am very sorry to hear your condition has worsened. Hopefully you can get a good consultant and team to help you out. The step you have taken with regard to counselling can only be a positive thing. Hope it helps.

Laylaw raises a very interesting point about (the lack of) support groups in Ireland for HS. A general question to all: do people think an Irish support group would be worthwhile? Do you all think it would be beneficial? Feel free to pm me or post here about this. I think the idea has plenty of merit and would be willing to put in some work on this. I would be very interested in hearing your thoughts on this.

In the meantime, The Irish Skin Foundation (http://irishskinfoundation.ie/) is a recently formed group that aims to help those affected by skin conditions in Ireland. They have relatively recently updated their site to include a section on HS. The link appears to be down as I write but it is essentially a link to the British Association of Dermatologists (http://www.bad.org.uk/).

PorridgeHead · 07-04-2014 10:20am

Hi LayLaw.
I am sorry to hear that things are so difficult for you recently.
I am more concerned about the comment you made about the St Vincents Medicos!

My daughter attends Prof Brian Kirby in Vincents Private. Lockman has recently referred to some research by Prof Kirby.
If Private isn't an option (but we thought it best to bite the bullet for faster treatment), you could try Dr. Paul Collins who works out of St Vincents and St Michaels Dun Laoghaire. http://www.ucd.ie/medicine/ourresearch/researchcentres/ucdcharlesinstituteofdermatology/aboutus/meettheboard/

He is part of the Charles Institute. http://cdschc.ie/about/the-charles-institute/

Pumpkinseeds · 08-04-2014 11:55am

Just curious to know if anyone else with HS has problems with sweating? I've had the glands in the left armpit removed years ago and for years the ones under the right arm didn't sweat at all, but they have done for the past 2 years, not excessively though.

In humid weather, especially Summer, I get very red faced and the glands around my jaw line are hot. I seem to sweat more around my head than anywhere. It's very embarrassing and the odd time I looked like I just stepped out of the shower:(:D

lockman · 08-04-2014 3:34pm

Pumpkinseeds wrote: »

Just curious to know if anyone else with HS has problems with sweating? I've had the glands in the left armpit removed years ago and for years the ones under the right arm didn't sweat at all, but they have done for the past 2 years, not excessively though.

In humid weather, especially Summer, I get very red faced and the glands around my jaw line are hot. I seem to sweat more around my head than anywhere. It's very embarrassing and the odd time I looked like I just stepped out of the shower:(:D

Yes, I too have a problem with excessive sweating. I've had the sweat glands removed from both armpits, and ever since, my body seems to be trying to compensate elsewhere, especially in the small of the back.

The humid weather really promotes sweating for me also, and after a brief, brisk walk in warm weather, I too look like I've just come out of the shower.

Anyway, the removal of the glands seems to have kept the HS at bay in the armpit region at least for me.

lockman · 08-04-2014 3:42pm

Another excellent overview of HS from Danish dermatologist GBE Jemec and his colleagues has just been published:
http://www.ncbi.nlm.nih.gov/pubmed/24567417

The paper is free to access and may be found here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3963556/

As I mentioned in a previous post, Jemec is considered by many to be one of the foremost authorities in the world on HS

Jemec's co-authors on this paper have also published widely on the condition so here are 3 widely published experts on the condition giving their current views on it.

I really appreciated the focus on the quality-of-life and work disability of HS sufferers in this paper.

Pumpkinseeds · 08-04-2014 5:25pm

lockman wrote: »

Yes, I too have a problem with excessive sweating. I've had the sweat glands removed from both armpits, and ever since, my body seems to be trying to compensate elsewhere, especially in the small of the back.

The humid weather really promotes sweating for me also, and after a brief, brisk walk in warm weather, I too look like I've just come out of the shower.

Anyway, the removal of the glands seems to have kept the HS at bay in the armpit region at least for me.

Me too, fingers crossed. Still, given the choice between being in soul destroying pain or being sweaty I'll take sweaty:)

Whippersnapper · 12-04-2014 8:29pm

I've just been diagnosed with HS. I'm 30 years old and I've been told it's quite unusual to develop the illness as an adult. Can I ask what age you were when you first noticed the condition and what age you were when you got diagnosed?

I've started a blog to talk about my experiences with it. It helps get everything down on paper so to speak. If any of you want to drop by and have a look that would be great. The link is in my sig.

lockman · 13-04-2014 11:38am

Whippersnapper wrote: »

I've just been diagnosed with HS. I'm 30 years old and I've been told it's quite unusual to develop the illness as an adult. Can I ask what age you were when you first noticed the condition and what age you were when you got diagnosed?

Hi Whippersnapper,

I am very sorry to hear about your diagnosis with HS. I appreciate that there is a lot to take in about it, but should you have any questions or anything like that, please post them here or pm me.

I was ~12/13 yo when the condition first arrived and I was misdiagnosed (with pilonidal sinus) for ~ 20 years.

I was finally diagnosed with HS when I was ~32 yo. I am now 40.

It is not that uncommon for people to go misdiagnosed or even undiagnosed for long periods.

HS is most commonly diagnosed in the second or third decades of life. In a 2006 age of onset study by Jemec and co-workers*, just under 50% of people were in the 20-30 year old age group when it started, approx 40% were under 20 yo, about 10% were in the 31-40 age group, and a very small percentage were 41+. The mean age of onset was 23 yo. Other studies have shown similar trends.

* Poli, F., Jemec, G.B.E, and Revuz, J. 2006. Clinical Presentation. In Hidradenitis Suppurativa, Jemec, GBE, Revuz J, and Leyden JJ (Editors), pp.11-24.

Pumpkinseeds · 13-04-2014 2:41pm

Whippersnapper wrote: »

I've just been diagnosed with HS. I'm 30 years old and I've been told it's quite unusual to develop the illness as an adult. Can I ask what age you were when you first noticed the condition and what age you were when you got diagnosed?

I've started a blog to talk about my experiences with it. It helps get everything down on paper so to speak. If any of you want to drop by and have a look that would be great. The link is in my sig.

Hi, I had my first flare up when I was about 13 or 14 and like most people it was undiagnosed/misdiagnosed until I was in my 20's, I'm 41 now. The thing about this disease is that so little is known about it. One expert will say that it can't occur before puberty for example, then you will read about a case of it in a young child.

The same can be said of areas of the body that some experts will say can't be affected and then you will read about cases where those areas are affected. With such relatively little research being done I don't really believe that there are any 'experts' on it.

Whippersnapper · 13-04-2014 11:43pm

Thanks for the replies. I think I may have had some symptoms as a teenager but passed them off as ingrown hairs or something like that.

Would any of you in this thread be interested in guest posting on my blog? I'd like to get many different accounts of the illness from as many HS sufferers as I can. PM me or comment on my blog if you'd like to get involved.

Pumpkinseeds · 16-04-2014 4:59pm

With the weather getting a bit more humid I've been having more flare up's. I was planning on getting measured for a new bra tomorrow but one of the old sinus tracts under my arm has gotten active this week, so that's not going to happen.

It just got me thinking about the other minor but annoying problems with this disease, like buying comfortable underwear that doesn't press on sore areas or getting Summer clothes that have a bit of a sleeve on them. Women will know what I mean about sleeves. For some reason over the last few years it's gotten really hard to find tops that don't have cut off sleeves or virtually non existant sleeves.

I have massive scarring under 1 armpit and it looks a bit like a shark bite, but I've never for a second regretted having that surgery done. The other armpit is active and has a lot of old scarring from minor ops etc, so I like to keep them hidden.

I was just wondering if anyone else would like to share their trivial minor annoyances about HS, or just generally have a rant:D

cindrella · 16-04-2014 11:34pm

Hi i have been reading this thread for quite a while my gp has just sent a referal letter to vincents for me to be seen by a consultant after 17 years of putting up with it in 32 last 4 years have been the worst but last year has really got to me not a month goes by when i haven't had an abcess either under my armpit or groin that my gp needs to drain have about five active at present just had one drained today loads of scarring from old ones have tried antibiotics etc but nothing works i do believe I have hs unfortunately i just hope in not waiting to long for appointment to see consultant any suggestions advice would be great im on beymicine antibiotics last four months

laylaw · 24-04-2014 4:54pm

Pumpkinseeds wrote: »

It just got me thinking about the other minor but annoying problems with this disease, like buying comfortable underwear that doesn't press on sore areas or getting Summer clothes that have a bit of a sleeve on them. Women will know what I mean about sleeves. For some reason over the last few years it's gotten really hard to find tops that don't have cut off sleeves or virtually non existant sleeves.

This is one of my major annoyances as well. I find even if I wear something without a sleeve and wear a cardi over it, i'm still so conscious about someone catching a glance. I'm basically resigning myself to a t-shirt and jeans this summer.

cindrella wrote: »

Hi i have been reading this thread for quite a while my gp has just sent a referal letter to vincents for me to be seen by a consultant after 17 years of putting up with it in 32 last 4 years have been the worst but last year has really got to me not a month goes by when i haven't had an abcess either under my armpit or groin that my gp needs to drain have about five active at present just had one drained today loads of scarring from old ones have tried antibiotics etc but nothing works i do believe I have hs unfortunately i just hope in not waiting to long for appointment to see consultant any suggestions advice would be great im on beymicine antibiotics last four months

Heya cinderella, antibiotics have never worked for me. They'll usually only do something if you have an infection. I too have been referred to Vincents, I am going to be seeing Brian Kirby soon, if you read back someone else posted reports by him, he has an interest in HS and knows a lot about it.

He recently published a report about the link between HS and Vit. D, I didn't get to read the full report but I decided to get a Vit. D blood test done two weeks ago, and low and behold I am deficient. You vit.d levels should be around 15, mine is currently at 10.2. I've been told to take supplements for a month and get another blood test done then. I will keep you updated on whether or not this will have an effect on the HS, I am hoping it will clear it up nicely, but not hoping too much in case it doesn't.

You should have a read back at some of the medical journals that have been posted here, there are very interesting and for me, just knowing there is someone out there trying to get to the bottom of HS is a big comfort. There's hope for us all

You can pm me if you like or if you have any questions that you think I might be able to answer. I have HS mainly in both armpits, and like you I usually have about 5 or 6 at the same time. It's a nightmare.

cindrella · 24-04-2014 10:33pm

laylaw wrote: »

This is one of my major annoyances as well. I find even if I wear something without a sleeve and wear a cardi over it, i'm still so conscious about someone catching a glance. I'm basically resigning myself to a t-shirt and jeans this summer.

Heya cinderella, antibiotics have never worked for me. They'll usually only do something if you have an infection. I too have been referred to Vincents, I am going to be seeing Brian Kirby soon, if you read back someone else posted reports by him, he has an interest in HS and knows a lot about it.

He recently published a report about the link between HS and Vit. D, I didn't get to read the full report but I decided to get a Vit. D blood test done two weeks ago, and low and behold I am deficient. You vit.d levels should be around 15, mine is currently at 10.2. I've been told to take supplements for a month and get another blood test done then. I will keep you updated on whether or not this will have an effect on the HS, I am hoping it will clear it up nicely, but not hoping too much in case it doesn't.

You should have a read back at some of the medical journals that have been posted here, there are very interesting and for me, just knowing there is someone out there trying to get to the bottom of HS is a big comfort. There's hope for us all

You can pm me if you like or if you have any questions that you think I might be able to answer. I have HS mainly in both armpits, and like you I usually have about 5 or 6 at the same time. It's a nightmare.

hi thanks for the reply
the vitamin. D level us very interesting i think last time i had mine checked it was low and also my folate not sure if that means anything doctor never said anything but nurse commented that it was extremely low
hs is ok this week had a few drained and am having some relief have a few starting must get bloods re checked hopefully wont be waiting to ling to see me Kirby meet him loads of times as my mam was a patient of his really nice.doctor a gentleman and they are rare hope things are good with u always good to know we are not suffering alone

Pumpkinseeds · 25-04-2014 12:46pm

cindrella wrote: »

Hi i have been reading this thread for quite a while my gp has just sent a referal letter to vincents for me to be seen by a consultant after 17 years of putting up with it in 32 last 4 years have been the worst but last year has really got to me not a month goes by when i haven't had an abcess either under my armpit or groin that my gp needs to drain have about five active at present just had one drained today loads of scarring from old ones have tried antibiotics etc but nothing works i do believe I have hs unfortunately i just hope in not waiting to long for appointment to see consultant any suggestions advice would be great im on beymicine antibiotics last four months

You're having a rough old time of it. I never found antibiotics helpful with HS, except for treating cellulitis. I didn't know some doctors do drainage here. My GP in England used to send me to the hospital to have it done. It was handier in some ways, but having it packed daily for weeks by a nurse was very painful.

The waiting lists are ridiculous. My GP and Consultant have always recommended phoning the Secretary of whatever Consultant you're waiting to see, if you've been waiting a good while. Just to ask where you are on the list. There've been a few times when my GP has written to Consultants to push for me to be seen faster.

I'm waiting for anti-tnf infusions. My Consultant has written to them twice since December and I've left 2 messages and still nothing. I don't blame the departments, I blame the 2 tier system that allows private patients to be seen in weeks and public patients to wait years to see any consultant for anything.

Clothes wise, last year I stocked up on very light loose cotton blouses that kept me cool in the humidity and also let a bit of air circulate at the sore bits. Dunnes do cheapish linen trousers and the knee length cargo shorts and combats are a bit more comfortable than jeans. They aren't really my thing but wearing them is better than looking like a beetroot and hovering near the fridges in the frozen section of the supermarket:D

Pumpkinseeds · 28-04-2014 5:37pm

I had an abcess in my right armpit over the past week. It's been years since I had an active one there, usually there's just itchy scarring and old sinus tracts. It's draining now, thankfully. One thing that's always annoyed me is when HS is described as 'boils'.

To me a boil is something that forms a head and bursts, like a large pimple. For me HS abcesses are a large mass that pushes slowly upwards eventually tearing through the skin, not a boil.

laylaw · 28-04-2014 9:31pm

Pumpkinseeds wrote: »

I had an abcess in my right armpit over the past week. It's been years since I had an active one there, usually there's just itchy scarring and old sinus tracts. It's draining now, thankfully. One thing that's always annoyed me is when HS is described as 'boils'.

To me a boil is something that forms a head and bursts, like a large pimple. For me HS abcesses are a large mass that pushes slowly upwards eventually tearing through the skin, not a boil.

I agree. "boils" always makes it sounds even more disgusting in my mind. Makes me feel like I should be coloured green and wear a pointy hat. Hope your arm clears up soon. I have it in both of my arms but they have been behaving themselves somewhat lately. Still draining but no pain. (I've probably jinxed myself now though!)

Pumpkinseeds · 28-04-2014 10:32pm

I'll be fine:) I've only got 1 Enbrel injection left and there's a week between that and my next consultation. I'm not going to refill it until I've spoken to the Dermatologist. I've been on the stuff for 8 months now and there isn't the slightest sign of improvement so I don't really think there's much point in taking it.

I was sceptical of it to begin with, it would have been nice if it had worked but there's always the Infliximab infusions, if I ever get an appointment date.

Pumpkinseeds · 29-04-2014 10:43am

Well now that the abcess is draining another previously inactive sinus tract is inflammed, not sure what that's about. One thing I've noticed with mine over the years is that I tend to get flare ups in an area, say the groin for example and then that'll settle down while it targets another area like the arm pit. Anyone else experience that?

Also there are times when it affects areas on the same side of the body so the right armpit and right groin would be active while the left would be fairly inactive. I had some blood tests 3 months ago and my oestrogen levels were very low. I've been off the pill since then to have more bloods taken this week to get a more accurate oestrogen level. Maybe that's it. I'm only 41 so it came as a bit of a shock to think menopause might be closer than I thought.

laylaw · 29-04-2014 12:21pm

I experience the same thing. I will have both arms clear for a day and then it'll flare up on my groin. It's mostly in my arms though and having both clear at the same time is a magical moment. I've also noticed it attack either the left or the right. If my left arm is clear and I have a flare up on my right arm, I'll get a small flare up on the right of my groin. It's interesting, I'd love to know why it does that, there has to be a reason.

Best of luck with your blood tests, hopefully it was just the pill causing your levels to be low.

I got my letter through the door today for an appointment with Prof. Brian Kirby, it will be on the 22nd of May. I'm looking forward to it, and quite surprised at how quick it came through considering I'm on a medical card.

My doc also has me taking 1600UI of vit. d per day, as the normal levels are 50ug and my levels are only at 10.2. Scary when you think about it, lord knows what else I would have wrong with me if I ignored them.

Pumpkinseeds · 29-04-2014 4:17pm

That's brilliant that you got such a quick appointment date. Hopefully all will go well for you:)

cindrella · 29-04-2014 10:25pm

Hi guys just wondering what deodorant etc u use is there any that doesn't irritate i use aveno shower gel as its recommended by a dermatologist before for eczema doctor advised me to use hibi scrub for under arms and groin find it very harsh on skin

Pumpkinseeds · 29-04-2014 11:29pm

cindrella wrote: »

Hi guys just wondering what deodorant etc u use is there any that doesn't irritate i use aveno shower gel as its recommended by a dermatologist before for eczema doctor advised me to use hibi scrub for under arms and groin find it very harsh on skin

I was advised to use Hibiscrub and I did for years, but like you I found it very harsh and so I stopped using it. I think Lockman posted an article here about Hibiscrub having been found not to make any difference to HS.

I use Original Source Lemon shower gel. I don't use any deodorant under my arms as the left armpit has been grafted and doesn't sweat but the right one would be aggravated if I sprayed deodorant on it. I just use the deodorant on skin that isn't affected by the HS.

There is a range called MOO GOO that you can get in many pharmacies and online. It's free of nasties, not tested on animals and there's one specifically tailored as a steroid free alternative for excema and that sort of thing. It might be worth trying, I used it for dermatitis on my hands and it was really good, have forgotten the name of it.

laylaw · 30-04-2014 12:57pm

cindrella wrote: »

Hi guys just wondering what deodorant etc u use is there any that doesn't irritate i use aveno shower gel as its recommended by a dermatologist before for eczema doctor advised me to use hibi scrub for under arms and groin find it very harsh on skin

I use Urtekram Organic Rose Crystal Deodorant. Got it in the health food store. I have sensitive skin in general so I find this and the dead sea spa magic bath products work best for me.

Pumpkinseeds · 01-05-2014 6:52pm

The latest abcess burst in the shower a while ago, thankfully. I'm amazed at how I'd forgotten just how bad the pain is in the armpit. It's mostly affected my nether regions for years. This one came up a day or so after the last one went, hopefully a 3rd one won't come up now. I had the blood tests for Dermatology and Oestrogen levels done this morning so I started back on the Pill to see if it settles things down a bit.

I was chatting with my GP this morning and getting him up to speed on things, he was shocked at how ridiculous the system is, and he has 2 other patients with less severe HS.

My situation is this: Attended Dermatology in Galway for a year and nothing worked so the Dermatologists have a special think tank every now and again and Derms from the area see difficult Derm cases and discuss their ideas. The general consensus was for me to try an anti-tnf injection weekly, that didn't work.

So they decided that Infliximab infusions would be the best option and referred me to Limerick as it's much closer for me than a 4 hour round trip on the bus. Limerick were adamant that I try Enbrel weekly injections which I've been on for 8 months and haven't helped.

In December Dermatology in Limerick tried to fob me off with a 'there's nothing more we can do' response. I wasn't leaving the consulting room without a referral to Croom, which I got. The consultant wrote to Croom in December and February. He advised me to phone Croom and explain just how severe my HS is and hope they'd see me as soon as possible.

I phoned the Rheumatology Secretary in Croom who told me that I needed to phone the Rheumatology Nurse as it's her who deals with appointments. Rheumatology nurse doesn't answer the landline so I rang the mobile number for her. The mobile hasn't been answered and has a voicemail saying if you want an appointment you have to phone the relevant secretary

:mad:

I left a message last week,not mentioning an appointment, on the nurses mobile and she hasn't returned my call. So I'm just going to have to persevere and call again tomorrow and every day thereafter if necessary.

Hidradenitis Suppurativa

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