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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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cindrella

Got my appointment for to see prof Kirby in vincents its in July so not to bad going to get bloods done next week gonna get the vitamin d level checked any others u would advice me to get checked while in there that could be affecting hs i counted today 16 active on right arm there getting so bad they are spreading further down even got one at side of my boob hate this disease left arm has eight active covered in scars

Pumpkinseeds

cindrella wrote: »

Got my appointment for to see prof Kirby in vincents its in July so not to bad going to get bloods done next week gonna get the vitamin d level checked any others u would advice me to get checked while in there that could be affecting hs i counted today 16 active on right arm there getting so bad they are spreading further down even got one at side of my boob hate this disease left arm has eight active covered in scars

Ouch, you're having a bloody rough time of it. At least you've got an appointment now and hopefully they'll be able to get a handle on it soon.

Pumpkinseeds

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

The GP draining them is possibly a big part of the problem. It makes them spread unless the wound is excised. I used to get it done in hospital by a general surgeon and then had to have a nurse come to the house every day and then every other day for weeks to change and pack the wound. Just remembering it makes me shudder. Even then it eventually just became one big open wound that just wouldn't heal.

cindrella

Pumpkinseeds wrote: »

The GP draining them is possibly a big part of the problem. It makes them spread unless the wound is excised. I used to get it done in hospital by a general surgeon and then had to have a nurse come to the house every day and then every other day for weeks to change and pack the wound. Just remembering it makes me shudder. Even then it eventually just became one big open wound that just wouldn't heal.

ones under my arm burst by themselves groin ones are much bigger in size and need help so when is active I have to stick pain for few days then if its ripe as my doctor calls it he will open it but he never packs them had a different doc who did i just want it to burst as pain is not as bad when it has

Pumpkinseeds

cindrella wrote: »

ones under my arm burst by themselves groin ones are much bigger in size and need help so when is active I have to stick pain for few days then if its ripe as my doctor calls it he will open it but he never packs them had a different doc who did i just want it to burst as pain is not as bad when it has

The nether regions:D are the worst I know. Sometimes I'd rather gnaw my own foot off than wait for one to burst. I'm back at the hospital with my consultant this afternoon. He is one of the least helpful ones I've ever had and I bring my husband with me to see him. Now I've never been one not to stand up for myself, but this guy is like a different person when I go alone, he's just dismissive and patronising and when I bring my husband he's suddenly mr helpful:rolleyes:

You really need to be clued up when you see these guys. I was referred from Galway as it's much more convenient for me to have the Infliximab infusions done in Croom, if they ever give me an appointment. But he tried to fob me off by giving me a load of bulls*it about it being 'expensive and difficult to arrange with Croom'

He would have sent me off to just live with it. It makes me wonder how many other people with stage 3 of this disease have been fobbed off without any attempt at treatment because of cost or lack of interest.

lockman

Pumpkinseeds wrote: »

The nether regions:D are the worst I know. Sometimes I'd rather gnaw my own foot off than wait for one to burst.

I found the lesions/eruptions in the nether regions the most difficult to handle. The armpits were difficult enough, but the thighs/groin and backside areas can be really tough to take. I take regular baths (salts, tea-tree oil, and permitabs (prescribed by my dermatologist)) to try and take the sting out of them. Don't know if they make all that much difference, but at least you feel clean, albeit temporarily.

lockman

Below is a link to an abstract of the latest research paper from HS-specialist, the Danish dermatologist Prof Gregor Jemec, and his colleagues.

http://www.ncbi.nlm.nih.gov/pubmed/24804604

Full access is restricted at the moment but the abstract gives a very good summary of the paper, which is a follow-up of over 200 HS cases (diagnosed from 1981-2001).

A few points that jump out:

- Over 90% of HS patients (in this study) were smokers.
- Remission was reported in ~40% of cases (I had never seen a figure for remission before now).
- Remission was approx twice as high in non-smokers than in smokers.
- Similarly, remission was ~twice as high in non-obese than obese.

In the past few years I have noticed an increasing trend in Jemec's (and many others) papers that points a finger at factors like smoking and obesity.

Pumpkinseeds

I'm absolutely exhausted now. You know days where you just feel mentally and physically weary. Saw the Dermatologist today and they'll ring Croom next week to see if they can speed things up at all. As expected it's all down to budget. Apparently the anti-tnf injections are covered by a different scheme but the infusion outpatient treatment comes out of the hospitals budget, I suspected this was why Galway sent me to Limerick:rolleyes:

I spent ages wandering around the Crescent shopping centre trying to find a few tops that had sleeves, didn't manage to find any that were cotton but at least I found a few that have sleeves. My husband didn't even complain once:) He gave me another 3 month prescription of Enbrel even though it's made no difference so far. Worryingly my Liver results are 99 but they should be 33

So I'm going to have to get some more blood tests at my GP's.

Pumpkinseeds

I got an appointment with Rheumatology at Limerick Regional next week. I don't know if it's a consultation or if they're starting my Infliximab infusions, but it'll be good to get the ball rolling. The Enbrel is a waste of time, I've got more flare ups now than I've had for years.

Pinkyponk1

Hi All,
I was so happy when I came across this thread - it's only recently that I've realised that I'm not the only person in Ireland with this horrible condition.
I'm 34 years old and have suffered with HS since I was 17, that's half my life! After reading some of the posts, I'm thankful that I only have the condition in my groin area although I've had a few breakouts under my left arm but they always cleared up.
Over the years, I've been at the STD clinic a few times, every GP I've ever attended, I've mentioned it and each time I was told it was folliculitis, no big deal and was given prescription after prescription for flufloxicillian antibiotics. I was referred to a female dermatologist in St. James Hospital in about 2005 who spent about 30 seconds with me, also said it was follicultis and to stop using perfumed soap. That was her advice.
In 2012 I was pregnant with my son. It was so bad at one stage, I showed it to the obstetrician at one of my visits and she referred me to a dermatologist (she got a bit of a shock when she seen it). I went to see him privately because the waiting list to see him publicly in this area is 2 years. €160 later, he tells me that his hands are tied as far as treating it is concerned until I have the baby and stop breastfeeding. I'm due to go back to see him next Monday and am a bag of nerves. It hasn't been treated properly in nearly a year and a half and is as ugly as sin now, extremely flared up and angry looking.
He told me in 2012 that it wasn't the worst case he'd ever seen , but I felt like saying back to him 'it's the worst case that I have seen - try living with it on a daily basis.' It's affecting my relationship with my husband and really getting me down. I'd love to bring my son swimming but I wouldn't get into a swimsuit if I was paid. I'm self conscious of the odour all the time and wouldn't dream of leaving the house without having a shower first.
I've tried every cream and wash imaginable. I was using hibi-scrub for years but it didn't seem to make any difference. I'm thinking of going on a gluten free diet to see if that helps but I really hope that the dermatologist has some good suggestions when I go to see him on Monday.

(

Pumpkinseeds

Hi pinkyponk1, sounds like you've been having an awful time. Hopefully you'll get some decent treatments now and get on top of it. I know that when I started having the anti-tnf treatments my Dermatologist made me sign a form saying that I wouldn't get pregnant for at least 2 years after stopping treatment, so presumably they're concerned about potential problems in that area.

I'm 41 and I've had HS since I was about 14 or so, it went undiagnosed/misdiagnosed until I was in my mid 20's. I never found antibiotics any good for the really bad stuff and I only really use them if I get cellulitis. My gp has 2 other patients with this disease so he's fairly well clued up on it these days and doesn't fob me off with things that he knows won't help.

There are a few treatments now that seem to help people with various stages of the disease and not everyone with it will get it as bad as stage 3. Once the diagnosis is made you can start to get on track and you'll get lots of good info and advice here. I used Hibiscrub for years and found it useless, if anything it just made my nether regions itchy.

I use Original Source Lemon and Teatree oil showergel everywhere these days. It's kind to skin and has a nice scent. It is very difficult to disguise the odour sometimes, regardless of how great your personal hygiene is. I find the scarring very difficult at times but I just cover it up with long sleeved light fabric sleeved tops.

lockman

Pumpkinseeds wrote: »

I got an appointment with Rheumatology at Limerick Regional next week. I don't know if it's a consultation or if they're starting my Infliximab infusions, but it'll be good to get the ball rolling. The Enbrel is a waste of time, I've got more flare ups now than I've had for years.

That is (potentially) good news - at least it is a step in the right direction. Fingers crossed you get sorted out with the infliximab infusions asap. Let us know how you get on.

As an aside, Trinity's Prof Luke O'Neill was on the Pat Kenny show on Newstalk this wednesday talking about anti-TNF therapy for various conditions. I think he said there are now 8 different types of anti-TNF drugs. Generally speaking, they wont work in ~40% of cases and they dont why they work in some, and not in others. It is a very active area of research at the moment.

lockman

Hi pinkyponk,

Glad you found us and sorry to hear you have this horrible condition. As you will see from this thread, you most certainly aren't alone. Your story (of misdiagnosis etc) is unfortunately all too common.

Pumpkinseeds has covered a lot of the points you raised. Just wanted to say that if you want to ask anything, feel free to post here or pm if you like.

Also, like Pumpkinseeds, I find the tea-tree oil helps.

Just another point - I go swimming regularly. I am heavily scarred in the armpit regions (from numerous surgeries) and most people dont appear to pay any notice, or maybe I dont notice them noticing, if you know what I mean. Many medics will advocate exercise, where tolerable, to try and help with the condition. It also helps keeping the weight down, which is increasingly thought to play a significant role in the severity of HS. I think the regular exercise helps me with my HS, akthough I couldn't say categorically so.

Good luck with the derm appointment and remember that the derm is there to try and help you.

Pinkyponk1 wrote: »

Hi All,
I was so happy when I came across this thread - it's only recently that I've realised that I'm not the only person in Ireland with this horrible condition.
I'm 34 years old and have suffered with HS since I was 17, that's half my life! After reading some of the posts, I'm thankful that I only have the condition in my groin area although I've had a few breakouts under my left arm but they always cleared up.
Over the years, I've been at the STD clinic a few times, every GP I've ever attended, I've mentioned it and each time I was told it was folliculitis, no big deal and was given prescription after prescription for flufloxicillian antibiotics. I was referred to a female dermatologist in St. James Hospital in about 2005 who spent about 30 seconds with me, also said it was follicultis and to stop using perfumed soap. That was her advice.
In 2012 I was pregnant with my son. It was so bad at one stage, I showed it to the obstetrician at one of my visits and she referred me to a dermatologist (she got a bit of a shock when she seen it). I went to see him privately because the waiting list to see him publicly in this area is 2 years. €160 later, he tells me that his hands are tied as far as treating it is concerned until I have the baby and stop breastfeeding. I'm due to go back to see him next Monday and am a bag of nerves. It hasn't been treated properly in nearly a year and a half and is as ugly as sin now, extremely flared up and angry looking.
He told me in 2012 that it wasn't the worst case he'd ever seen , but I felt like saying back to him 'it's the worst case that I have seen - try living with it on a daily basis.' It's affecting my relationship with my husband and really getting me down. I'd love to bring my son swimming but I wouldn't get into a swimsuit if I was paid. I'm self conscious of the odour all the time and wouldn't dream of leaving the house without having a shower first.
I've tried every cream and wash imaginable. I was using hibi-scrub for years but it didn't seem to make any difference. I'm thinking of going on a gluten free diet to see if that helps but I really hope that the dermatologist has some good suggestions when I go to see him on Monday. (

lockman

lockman wrote: »

Just another point - I go swimming regularly....

Just wish to add to this. I wont go swimming if I have active lesions/ am in a flare-up due to a) pain and b) out of consideration for other pool users. Thankfully, I dont have many active lesions of late.

Pumpkinseeds

I'm not sure if my appointment next week is to start Infliximab infusions or for a consult, it could be either as it's the same department as my usual consultant, but with Rheumatology this time.

I'm just wondering what to expect with the infusions. Things like how long it usually takes per session, if there are any side effects and since I'm taking the bus will I be feeling ok enough afterwards to get the bus home. I'd appreciate hearing from anyone whose had/having the Infliximab infusions. Thanks.

lockman

Pumpkinseeds wrote: »

I'm not sure if my appointment next week is to start Infliximab infusions or for a consult, it could be either as it's the same department as my usual consultant, but with Rheumatology this time.

I'm just wondering what to expect with the infusions. Things like how long it usually takes per session, if there are any side effects and since I'm taking the bus will I be feeling ok enough afterwards to get the bus home. I'd appreciate hearing from anyone whose had/having the Infliximab infusions. Thanks.

Pre-infusion, they will give you some paracetamol and other meds (cant recall exactly what), over a ~30 min period and ask you a lot of detailed questions (any infections recently, flu-like symptoms etc). Then, the infusion is done over a ~1 hour period. You will be sitting in a comfortable chair / on a bed throughout the process with a drip going into your arm and the infliximab is delivered to you through the drip. They will monitor you throughout the infusion (heart-rate, blood pressure, temperature) and will watch you closely for ~1 hour afterwards before letting you go home (and asking you many questions - do you feel any differently and so on). The whole process takes ~3 hours or so.

Fortunately, I have never had any side-effects with infliximab. They will explain these to you before giving the infusion to you.

Pumpkinseeds

lockman wrote: »

Pre-infusion, they will give you some paracetamol and other meds (cant recall exactly what), over a ~30 min period and ask you a lot of detailed questions (any infections recently, flu-like symptoms etc). Then, the infusion is done over a ~1 hour period. You will be sitting in a comfortable chair / on a bed throughout the process with a drip going into your arm and the infliximab is delivered to you through the drip. They will monitor you throughout the infusion (heart-rate, blood pressure, temperature) and will watch you closely for ~1 hour afterwards before letting you go home (and asking you many questions - do you feel any differently and so on). The whole process takes ~3 hours or so.

Fortunately, I have never had any side-effects with infliximab. They will explain these to you before giving the infusion to you.

That's good to know, thanks. I have Epilepsy so that my be a factor, not sure. On the plus side, I started HRT this week and the heavy sweating seems to have stopped, so hopefully that'll calm down the flare ups. I'm still kind of in shock about menopause at 41, seems weird, but hey ho.

tinimc

Hi everyone,

i have started on a 6 week dose of antibiotics called Tetralvsal 300mg twice a day as well as Dalacin topical cream. I'm just wondering has anyone else being on these and what were their views. I currently have a HS in my groin area since January. I haven't had this in years as i have been on Infliximab for Colitis/Chrohns and they cleared up nearly instantly. But i did suffer terribly in my later teens early 20's. As a woman and having in your groin area its very embarressing and annoying. The pain alone would get to you. So in January it flared up again for no reason and i have had them constantly since then. I saw a dermatologist 2 weeks ago who said i was only in stage 1 (infrequent flare ups!!!!) wouldn't agree with him there but he said the option was to go on a 6 week dose on antibiotics and if after a few doses they dno't work then try a 6 month course. So today is day one of these antibiotics, i hope they work cos i'm fed up of it now. I can totally understand eveyone's pain and what they are going through. Does anyone know of any support groups or websites in Ireland relating to HS, would love to get the information if you know of any. Hope everyone has a happy and pain free day.

cindrella

Hi just an update i got results for vitamin d level and its 30.4 doc said its low and comments on result sheet says high risk of bone disease doctor said he doesn't know about vitamin d so no advice givin my doctor is not great hence why i am in process of changing he gives nothing for treatment etc even though today i showed him under my left arm today with 20 active he so ohh they look sore felt.like hitting him

Pumpkinseeds

I had my first appointment with Rheumatology today and they've prescribed Methotrexate pills to take before and during the Infliximab treatment. The info sheet they gave me says not to drink alcohol. Oh God, I really hope that isn't a permanent ban on booze:D:(

lockman

tinimc wrote: »

Hi everyone,

i have started on a 6 week dose of antibiotics called Tetralvsal 300mg twice a day as well as Dalacin topical cream. I'm just wondering has anyone else being on these and what were their views.

I tried that cream sometime ago and it made no notable difference to me, although I had very severe HS at the time.

I have been on very similar antibiotics and had very little impact, although I was, again, very bad at the time.

I can totally understand eveyone's pain and what they are going through. Does anyone know of any support groups or websites in Ireland relating to HS, would love to get the information if you know of any. Hope everyone has a happy and pain free day.

I mentioned the existence of a not-very-active facebook Irish HS group in some earlier posts. I am not aware of any other Irish groups. There are a few international and UK-based groups, also on facebook. Pm me if you'd like more info.

Do people think such a group would/could help those living with the condition? I'd be willing to put some effort into establishing one.

lockman

cindrella wrote: »

Hi just an update i got results for vitamin d level and its 30.4 doc said its low and comments on result sheet says high risk of bone disease doctor said he doesn't know about vitamin d so no advice givin my doctor is not great hence why i am in process of changing he gives nothing for treatment etc even though today i showed him under my left arm today with 20 active he so ohh they look sore felt.like hitting him

It is no surprise that your doctor wasn't aware of the possible HS-Vitamin D link: the Prof Kirby group paper was only published in April of 2014. Secondly, the Kirby group only suggested that there may be a possible link. Also, the number of people in their study (=16) is very small, and it is difficult to make general statements about the HS general population based on observations in such a small group of people. Further work on larger groups of people would be needed before any firm statements can be made.

Another thing to bear in mind in relation to the Kirby group study: Ireland has one of the highest incidents of Vitamin D deficiency in the world due to our northerly latitudes! Vit D is known as the sunshine vitamin (as sunlight promotes the production of the vitamin).

Unfortunately for us, there is as yet no evidence to suggest that taking Vit D supplements in our diet has any impact on HS.

Sounds like your arm is in a state at the moment: hope you get some kind of relief asap.

lockman

Pumpkinseeds wrote: »

I had my first appointment with Rheumatology today and they've prescribed Methotrexate pills to take before and during the Infliximab treatment. The info sheet they gave me says not to drink alcohol. Oh God, I really hope that isn't a permanent ban on booze:D:(

Looks like you are on course to receive infliximab. That is great - I hope they start you asap. If you even get a fraction of the relief that I've been getting you'll be doing alright. Infliximab has really made a huge and profound difference to my quality-of-life.

I am on methotrexate (MTX) aswell. My derm did say to me a few years ago that the MTX could turn out to be a great friend to me and it certainly appears to have been. It is a very potent drug, with possible nasty side-efects, and it took some getting used to. Keep a close eye on yourself while taking it and make sure to have your bloods monitored regularly.

I found the ban on booze to be a very small price to pay for the rellief from HS that infliximab and MTX has given me. Best of luck with them.

lockman

Below is a link to a 2007 paper by a group of French clinicians suggesting a possible link between the condition and zinc.

http://www.ncbi.nlm.nih.gov/pubmed/17460404

Their study was done on a very small group of patients (=22) so consider that before drawing any conclusions. Also, the HS patients were from stage I-II. No stage III were included in the study.

They do make some bold claims in it, such as "complete remission" in a signifiant percentage of patients. Given these claims, it is very surprising that there hasn't been any further studies done with larger groups of patients, or maybe there was but negative results were obtained (which wouldn't necessarily be reported).

Pumpkinseeds

lockman wrote: »

Looks like you are on course to receive infliximab. That is great - I hope they start you asap. If you even get a fraction of the relief that I've been getting you'll be doing alright. Infliximab has really made a huge and profound difference to my quality-of-life.

I am on methotrexate (MTX) aswell. My derm did say to me a few years ago that the MTX could turn out to be a great friend to me and it certainly appears to have been. It is a very potent drug, with possible nasty side-efects, and it took some getting used to. Keep a close eye on yourself while taking it and make sure to have your bloods monitored regularly.

I found the ban on booze to be a very small price to pay for the rellief from HS that infliximab and MTX has given me. Best of luck with them.

Thanks, I'm going to enjoy a few drinks over the weekend before I start the Methotrexate on Tuesday. I've got to get the bloods done every fortnight for a while, lovely as my veins are useless:D They're hoping to get me started on Infliximab in about 3 weeks. It's going to be a nightmare getting to Croom as I don't drive, but hopefully it'll be worth it, fingers crossed anyway.

Pumpkinseeds

It's interesting to see people being prescribed topical creams, it's something I never had prescribed, although I'm reading more about them being used these days. I'm looking forward, if that's the right way of wording it, to starting the Infliximab infusions, sitting down is starting to be a problem.

I had a good chat with the nurse and rheumatology take an entirely different view of HS than I've ever come across. In their opinion it's caused by a problem with the immune system as opposed to infection. I've had lots of joint aches and pains over the years and never thought much about it but apparently that can be the HS as well.

lockman

Pumpkinseeds wrote: »

I had a good chat with the nurse and rheumatology take an entirely different view of HS than I've ever come across. In their opinion it's caused by a problem with the immune system as opposed to infection. I've had lots of joint aches and pains over the years and never thought much about it but apparently that can be the HS as well.

There is an increasing number of authors in the medical literature beginning to think along the same lines about HS, and specifically that it is an autoimmune condition.

Pumpkinseeds

lockman wrote: »

There is an increasing number of authors in the medical literature beginning to think along the same lines about HS, and specifically that it is an autoimmune condition.

How have you found taking methotrexate, if you don't mind me asking? I've read some nightmare stuff about it, but I suppose you could say the same about a lot of meds. I'm going to start it on Tuesday so I'll soon find out. I'll be on 10mg for a month, increasing to 15mg a week after that.

lockman

Pumpkinseeds wrote: »

How have you found taking methotrexate, if you don't mind me asking? I've read some nightmare stuff about it, but I suppose you could say the same about a lot of meds. I'm going to start it on Tuesday so I'll soon find out. I'll be on 10mg for a month, increasing to 15mg a week after that.

I am currenlty on 10mg per week of methotrexate(mtx) and have been taking it for 4+ years now. It took some getting used to, to be honest. When I first started taking it, I had the following reactions:
i) a general malaise and tiredness,
ii) diarrhea,
iii) sensitivity to sunlight

I take mtx with my last meal of the day and go to bed shortly afterwards. That helps with i). With ii), I still have that occasionally and from time to time find myself rushing to the toilet first thing the following morning. Taking the mtx with food generally helps with ii). The sensitivity to sunlight is a common enough side effect. I'd find my eyes streaming with tears on particularly bright and sunny days. With time, that has disappeared. Finally, my hair has thinned a bit on top, but age is probably playing a role there also.

All of the above I found have become less of an issue with time as the body is getting used to it.

Pumpkinseeds

I was going to start taking the Methotrexate tonight, but I forgot to stop taking the folic acid this morning. I've been taking folic acid for a long time and I put all my meds into a 7 day pill organiser so I just took it at 5am without thinking.

I'm having my first Infliximab infusion next Tuesday so fingers crossed. I plan on taking the MTX on Wednesdays as the infusions are always Tuesdays or Fridays and that gives me a couple of days to recover if I need it.