Hidradenitis Suppurativa

charlie1985 · 26-08-2010 3:30pm

hey all!
im a 24yr old male living in Dublin have had pretty bad acne from aged 15 ruffly till i 18 i was threated with roacutaine high doze for a year which cleared everything for a couple of months then everything blew way out of control lumps on my ear's,both sides of my groin,arse,armpits,back of my neck an lower spin.

doctor's kept sending me home with anti-biotics after they slash you to bits in draining them, all i'll say is whoever

is suffering from HS have to get infliximab threatment !!!!

i have had one infusion last wk took 3hrs to fully finish the drip and ruffly the same time for observation heart rate blood pressure an so on,next morning i was like a new man could not believe it everything was shrinking and drying up..unbelivable!!!!!
my next one is in a wks time and you no what it feels like im going on holidays can't wait...:) TAKE CARE ALL

LegacyUser · 29-08-2010 12:54am

charlie1985 wrote: »

all i'll say is whoever

is suffering from HS have to get infliximab threatment !!!!

i have had one infusion last wk took 3hrs to fully finish the drip and ruffly the same time for observation heart rate blood pressure an so on,next morning i was like a new man could not believe it everything was shrinking and drying up..unbelivable!!!!!
my next one is in a wks time and you no what it feels like im going on holidays can't wait...:) TAKE CARE ALL

If you have the time/energy, I'd love to hear how you get on with the infliximab treatment. I have no plans to go back to my specialist at the moment, but if it works well I might see if he thinks I'd be suitable. Were you able to just sit around reading while the drip was in? Did you have to go in as a day patient, or was it just in one of those fancy chairs? Any problems with driving or anything afterwards?

poondog · 30-08-2010 9:06pm

I have had 5 Imfliximab infusions and, to start with, everything went well. Amazing results, in a week everything had more or less gone and I was over the moon. But, after the 4th one had an awful reaction. 3 days afterwards, on a Sunday morning, started to shake, literally the rigours, could not stop and feeling like I was going to pass on. Managed to get to Limerick Hospital, my neighbour having driven me, and was kept in for 5 days with massive infection.
That passed and then, after the next infusion, 4 days later got this awful rash all over my neck which then went up the left hand side of my face and finally closed my left eye completely. This was only 3 days before I was going on holiday in Spain so went to my Gp who said it was a reaction to the A/bs I was taking for a chest infection (load of rubbish) . First night I was away, got the rigours again and thought "this is it" - felt so bad. After being sick 5 times it started to fade. Still have the chest infection after 5 weeks and A/bs won't clear it.
SO, be warned. It's a miraculous drug to start with but, any infection you get will be 10 times worse than you ever had before, and if you don't treat it immediately. you will be nearly dead before you think of it.
For these reasons, and other personal ones, have decided to stop the treatment.
I have lived with HS for 38 years now and, in my situation living alone,which may be very different to yours, could not carry on not knowing what reaction I was going to get to the next infusion. It's too scary, trying to do this being on your own.
Poondog

LegacyUser · 01-09-2010 12:40pm

Hi i have HS since i was 21 i'm now 34 . have had no operations but have been put on Roacutane several times but i don't find it much use. It's so painful & people don't understand

poondog · 01-09-2010 5:47pm

Don't even bother with the Roaccutane, has never, as far as I know, been used successfully to treat HS. Surgery doesn't help either as it will always pop up somewhere else, hence the name "Hydra", the 3 headed snake.
If you have support at home, try to get onto the Infliximab programme. The side effects are not good at all but it seems to work - in the beginning anyway. Don't try it if you live alone, it can be too scary.
Poondog

chappy · 02-09-2010 12:56am

Can anybody please let me know the name of a specialist to get in contact with in Dublin about getting the infliximab programs?

Really want to try this but am having no luck getting information.

poondog · 02-09-2010 6:09pm

Your consultant dermatologist should have all the info - has to be carried out through him anyway. As I said before, the funding for this treatment for this condition has all but dried up but you may be lucky in another area. Know that may sound silly but try another consultant in a less populated area - Dublin, Limerick, Cork etc are no good as there are too many people with this and not enough money. Don't know how many places are actually offering it as it has to be infused by specially trained nurses or doctors. (Unless you are very wealthy, you can't think about paying for it yourself either - think the drug alone, depending on your weight, is about 3,000 euro per infusion!!!!!!!!!!!!! That's apart from the hospital fee for doing it.
Hope this helps, probably not!
Poondog

stupidskin · 13-09-2010 5:38pm

Hi

I have'nt been on here in a while, it's almost 1 year now since I had the lumps removed from my groin area. It only took about 2 weeks and I was fit as a fiddle again and (touch wood) have'nt had any flareups there since !. A few years back I had my armpit cut out and that has flared up again either.

Although, now I seem to be getting lumps elsewhere, back of the head, neck. But these are different I think or maybe not funny coincidnece. Anyway just though I'd let you know that the surgery is quite painless and recovery was'nt too bad (with enough bedrest and painkillers.)

SS

eireanbo · 20-09-2010 11:37pm

hi all just had my second surgery this year 2 wks ago,,went back today to get stitches out..doc noticed a new boil starting so perscribed the clyndamcin/rifampcian combo for 6 wks...just interested in what your take is on this are the side effects worth it??love to hear your opinions thanks

lockman · 23-09-2010 8:37pm

eireanbo wrote: »

hi all just had my second surgery this year 2 wks ago,,went back today to get stitches out..doc noticed a new boil starting so perscribed the clyndamcin/rifampcian combo for 6 wks...just interested in what your take is on this are the side effects worth it??love to hear your opinions thanks

@eireanbo,

Good to hear from you again.

Ah that is a bummer about the new boil appearing. I have tried that clindamycin/rifampicin combo before, and to be honest, it didnt do much for me. In saying that though, others have found this to be beneficial for them. Maybe it will do you some good- will keep fingers crossed at this end for you

The Naked Chef · 05-10-2010 3:19pm

Hi All,

Just diagnosed with this after about 5 years. Been given Duac gel and and A/B steroid combo.

ANyone here used it? Any good.

Thanks in advance.

m'lady · 21-10-2010 10:44pm

Hi guys, just stumbled on this link when I googled a search a HD. I have been suffering from abscesses, generally on top of my legs, and side of breasts for the last 11 years. Its is getting worse, and now Im getting them under my arms. I only heard of HD through a colleague in work who has been plagued abscesses for years and its been finally diagnosed as being HD.

Anyway I have been asking various GP's for the last 10 years is there anything I can do about this abscesses, and I have been fobbed off saying its 'something I have to put up with'.

After reading a website on HD I believe I have this, but I know my Doctor will fob me off again. I was actually half thinking of telling him my Sister (in oz) has been recently diagnosed with HD, just to push him to take me serious, what do you think?

Please don't tell me to go to a different doctor, I have expressed my frustration about my abscesses at approximately 10 GP's over the last 10 years, no joking.

Can someone tell me can this be diagnosed by just looking at an abscess? or is it by a blood test?

chappy · 22-10-2010 12:36am

I would recommend asking to be referred to a dermatologist...your GP should not have an issue with doing this..It took me 10 years to get the correct diagnosis

m'lady · 22-10-2010 12:56am

chappy wrote: »

I would recommend asking to be referred to a dermatologist...your GP should not have an issue with doing this..It took me 10 years to get the correct diagnosis

That's what my point was chappy, I have been told its something that I have to deal with, that there is nothing that can be done.

nolly23 · 22-10-2010 9:06pm

Hi everyone,

After 10+ yrs of having "boils" I finally got to see a dermatologist today and got a diagnosis of HS. For the last few months I have had a little hole which is draining in my right armpit. The skin is lumpy and black... am sure I dont have to tell ye what it looks like. So I was really excited today going in to see Dermatologist thinking finally I am going to get something done with these god damn "lumps".
She told me that all though it was quite progressed I wasnt a bad case!!! I was shocked. I mean I know that there are loads which are probably worse than mine but to tell me that having to wear a dressing under my arm everyday and not to mention the smell and I am NOT a bad case.
I was sent away with a 4 month prescription for Augmentin and to buy Hibiscrub and some other tablet things that disolve in water and bathe sores in this solution. I am SO disappointed and just feel it was a waste of a journey.
Thanks for listening.
Niamh

chappy · 22-10-2010 9:13pm

There is no "cure" but there are methods which can bring the symptoms under control, it is all about finding the right balance for yourself. It can very much be trial and error. Some people opt for surgery if they can't find a combination which works for them.

nolly23 · 22-10-2010 9:23pm

Thanks Chappy for the quick reply.

I know there is no cure but I suppose I was expecting a bit more from her than a script for Augmentin and to be told its not too bad.

My family were shocked when I told them she said its not too bad. So I dont think I am over reacting. My GP thought she would offer surgery. I suppose after years of suffering in silence I finally got courage last year to go to the docs with it, I was expecting just a little more!

chappy · 22-10-2010 10:48pm

I have been to about 6 different specialists in the past 7 years both in Ireland and the UK. None of them would offer me surgery until I had tried atleast 6/7 combinations for 6 months at a time.

I am currently fighting for surgery at the moment after 3 years with my current specialist. None of the combinations have worked for me at all. Most doctors are cautious to do surgery because lots of the time the problem will reoccur or just move to another area of the body.

It is very frustrating position to be in and I understand where you are coming from. I would suggest you do as much research you can yourself so to go to appointment with knowledge and suggestions of things you would like to try.

chappy · 16-12-2010 2:30am

So...just a quick update

Had an appointment with my consultant yesterday and they have finally agreed that surgery is the necessary root. It is going to involve a minimum of 4 separate surgeries over hopefully a 2 year period.

It's weird after fighting for so long for this you would think I would b happy? Think the fact that I am just about recovered from 2 surgeries this year on a pilonidal cyst makes we dread having to go through it all again.

I really just hope it works...on the upside at least I'll be able to lie on my back while recovering

If anybody could give me realistic recovery times they have had after surgeries under their arms or breasts it would be greatly appreciated.

lockman · 16-12-2010 6:34pm

chappy wrote: »

Had an appointment with my consultant yesterday and they have finally agreed that surgery is the necessary root. It is going to involve a minimum of 4 separate surgeries over hopefully a 2 year period.

It's weird after fighting for so long for this you would think I would b happy? Think the fact that I am just about recovered from 2 surgeries this year on a pilonidal cyst makes we dread having to go through it all again.

I really just hope it works...on the upside at least I'll be able to lie on my back while recovering

If anybody could give me realistic recovery times they have had after surgeries under their arms or breasts it would be greatly appreciated.

@chappy, good to hear from you again, and thanks for the update.

Good to hear that you have finally got the surgery you were looking for. Have had both armpits done in the past, and am awaiting a groin op. As for the armpits, and recovery times, in the first instance for me, the first op on the armpit went very well. I spent about 1 week in hospital with the vac pack, and then for ~6-8 weeks afterwards, regular dressings every 2-3 days. My arm was in a splint during this time (to give the graft more chance of taking to its new site, or so the surgeon said). So all in all after about 2 months i was back to my old self. Had to do a bit of physio on the shoulder/arm area, which wasnt too bad either.

The 2nd armpit, well that was a bit of a nightmare. As before, about 1 week in hospital post-op, but then i picked up some low-grade bacterial infection which really delayed the healing process. Surgical team denied the existence of any infection (nowadays they are obliged to tell you if you have one). So, it was my gp who stepped in at this point and put me on antibiotics to try and get rid of the infection. All in all, it was about 4-5 months post op before i was back to myself (in other words, no more regular dressings etc). And as before, had to do a bit of physio. So now, 2-3 years post both surgeries, my armpitts are fine, no reoccurence (touch wood etc) as of yet, and i feel delighted with the results.

Feel free to pm if you have any specific questions etc.

Regards

lockman · 13-01-2011 9:45pm

Hello all,

I hope all fellow HS sufferers are doing well, and are as pain-free as is possible with this condition.

Just wondering how do ye cope (or not) with working? I am currently out of work, and am finding it increasingly difficult to function normally (have a bad dose in the groin area at the moment), namely walking is a serious problem for me at the moment

I was thinking of trying to apply for lomg term illness, although i am not sure that HS is recognised as such. Has anybody had any experiences of this, or other similar schemes? Any help on this would be greatly appreicated.

Best wishes,

LegacyUser · 14-01-2011 1:31pm

lockman wrote: »

Hello all,

I hope all fellow HS sufferers are doing well, and are as pain-free as is possible with this condition.

Just wondering how do ye cope (or not) with working? I am currently out of work, and am finding it increasingly difficult to function normally (have a bad dose in the groin area at the moment), namely walking is a serious problem for me at the moment

I was thinking of trying to apply for lomg term illness, although i am not sure that HS is recognised as such. Has anybody had any experiences of this, or other similar schemes? Any help on this would be greatly appreicated.

Best wishes,

I've got a bad dose (for me) at the moment and feeling pretty miserable about it. I'm managing work OK, though every step I take is painful right now, but I have a comparatively sedentary job. The worst thing is if I'm sitting down talking to someone, and I move suddenly in my seat and something catches. It brings tears to my eyes, which makes people think I'm far more invested in the conversation than I really am

Next bit spoilered for the squeamish.

I hope this doesn't sound gross, but I took an old soft bath towel and cut it into portions, and I line my trousers with those - stops the seams rubbing and catching and helps a bit. It requires a lot of changing and washing the towels, but does make walking easier.

My big worry at the moment is the amount of weight I've put on - I want to start the Couch to 5k, but am putting it off because of the pain, and am pretty much getting no real exercise at the moment. Every time I try to go for a walk/run I come back covered in blood and beside the pain I just find it humiliating. I met a neighbour on my way back day and we were talking on the footpath when he suddenly went white and pointed out that I was standing in a small pool of blood

He wasn't to know, but what do you even say to someone?

lockman · 15-01-2011 6:16pm

@someone 32,

Thanks for the post, and especially so for the useful tips: will definitely give it a go.

Regarding what you said about going for a walk/run, if it is any consolation, pretty much the same thing happens me, that is of course when i can physically manage it.

best wishes,

Lockman

seabre · 24-01-2011 12:47am

Hello All!

I cannot believe I have come across this thread! I have googled HS Ireland so many times for support groups / shared knowledge etc but to no avail so I gave up on it about 3 years ago so I am so pleased to see we HS sufferers have a corner in boards!!

I have been suffering from this damn thing now for 17 years. it started in my right arm pit with several nasty boils and after monthly trips to the gps and countless drainings and antibiotics I decided to treat as much as I could myself. Over the next 12 years or so I suffered varying amounts from mild to severe. I currently have sites in both armpits, groin, both breasts and thighs.

When I had my first baby by C section I had a very severe flair up and I was hospitalised for almost a week. The flair up was in my groin and very near the c section scar - I was so surprised to see the shock in most of the Nursing staff and even some doctors faces when they looked at the area, they were all incredulous yet when I saw the Plastic Surgeon who was more used to dealing with the disease he said that although my case was bad it was not the worst he had ever seen. He did think that surgery would be a good option for me but not until after I've finished having my family as effectively what he would be doing would be diminished if I were to have any further C Section surgeries so I'll struggle on for a few more years - I really don't want to be in the situation where by I'd be forced to make a decision not to have anymore kids.

My GP is a dermatologist and v sympathetic and quite knowledgable about the condition. He prescribed me a cream called Dalacin - which is not really for this condition (not sure what it is supposed to be for but maybe quite embarrassing for male sufferers to go to the chemist for as I know it is some sort of vaginal pessary). It is supposed to be applied daily to the sites but as my sites are so extensive I would need 2 or more tubes a week and at 26 quid a tube I just can't afford to use the treatment. Its not covered by the DPS either which I think is a joke but don't get me started on that one.

With regard to the work situation I can usually soldier on through but I have been so bad at times that I have had to leave work either through the pain of it or if I've had an untimely "burst". The smell is so foul it so embarrassing. I've had to tell 2 of my superiors in work which was embarrasment enough but my Manager is a man and I could not even think about telling him so when and if I have to call in sick I am always lying over what is wrong with me and I'm sure he senses this.

I really think the ignorance of this disease is one of the hardest issues to deal with as a sufferer. There should be a Long Term Illness status for it so sufferers who for periods at a time genuinely cannot work are not being treated as dossers etc.

Anyway - great to make contact with other sufferers If I can help anyone with any questions please feel free to pm me.

lockman · 24-01-2011 6:57pm

@Seabre,
Glad you found us: there are a few of us here who post from time to time. Welcome to our little group, and very sorry to hear of your plight, but at least you now know you are not alone.

As for your experiences, well i can relate to it somewhat. Most medics i have met (excluding my plastic and the odd specialist nurse) generally tend to look away in horror/disgust when i show them my bits and pieces. It is a very common reaction amongst people.

With regard to your gp who is also a derm, has she/he ever spoken to you about the TNF-inhibitor drugs? (TNF= tumour necrsosis factor; there is thought to be an autoimmune aspect to HS, so this drug effecively suppresses your immune system). I started on one of these about a year ago (Infliximab is the name of the drug i am on). I have found it to be very beneficial to my HS at least. I know a few others here have also got some relief from it also. I have been put on this by my derm, in consultation with my plastic - i will need surgery but they are both waiting to see how well this treatment goes before putting me under the scalpel

Anyway, hope you are as pain-free as possible.
Best wishes,

seabre · 24-01-2011 9:40pm

lockman wrote: »

@Seabre,
Glad you found us: there are a few of us here who post from time to time. Welcome to our little group, and very sorry to hear of your plight, but at least you now know you are not alone.

As for your experiences, well i can relate to it somewhat. Most medics i have met (excluding my plastic and the odd specialist nurse) generally tend to look away in horror/disgust when i show them my bits and pieces. It is a very common reaction amongst people.

With regard to your gp who is also a derm, has she/he ever spoken to you about the TNF-inhibitor drugs? (TNF= tumour necrsosis factor; there is thought to be an autoimmune aspect to HS, so this drug effecively suppresses your immune system). I started on one of these about a year ago (Infliximab is the name of the drug i am on). I have found it to be very beneficial to my HS at least. I know a few others here have also got some relief from it also. I have been put on this by my derm, in consultation with my plastic - i will need surgery but they are both waiting to see how well this treatment goes before putting me under the scalpel

Anyway, hope you are as pain-free as possible.
Best wishes,

Thankyou Lockman for this information. After I posted last night I took the time to go through the thread and read every post and I have to say I was shocked at the treatments that seem to be well known but have never been mentioned to me! I did do the long term antibiotic one for a few months but I had no improvement whatsoever so I didn't even persue it for the full 6 months.

My doc did say there were a few other options but none advisable if I was thinking of getting pregnant anytime soon so perhaps the infliximab was what he was referring to. I will chek in often for updates and to see how everyone is doing.

Great to get in touch - Thanks again!

LegacyUser · 27-01-2011 2:39am

Hi everyone my name is debbie i have had this condition since i was 14 and im now 24 and at stage 3, Im affected in my groin area and have had 6 ops in 2010 alone.

I have tried every treatment under the sun im so fed up with this condition its ruining my life. I have had some wonderful really good jobs ive lost through this illness.

Feeling so down lately as I cant funtion right at all my life is dominated by this can anyone help? any tips ?

I attend a consultant but he doesnt really no what to do with me as i have tried all treatments and have responed to nothing

lockman · 28-01-2011 7:11pm

corsa01 wrote: »

Hi everyone my name is debbie i have had this condition since i was 14 and im now 24 and at stage 3, Im affected in my groin area and have had 6 ops in 2010 alone.

I have tried every treatment under the sun im so fed up with this condition its ruining my life. I have had some wonderful really good jobs ive lost through this illness.

Feeling so down lately as I cant funtion right at all my life is dominated by this can anyone help? any tips ?

I attend a consultant but he doesnt really no what to do with me as i have tried all treatments and have responed to nothing

Corsa01,

Glad you found us. Welcome, and very sorry to hear you have this awful condition.

You have been through an awful lot - 6 ops in 2010 is unbelieveable. Hope you had some success with them.

Have you tried or has you doc mentioned the anti-TNF drugs to you? (See some of the earlier posts for some users experiences with this). Like you, i too am stage 3. I am on this anti-TNF regime for about a year - i get it once every 8 weeks or so, and it has made an enormous difference to my life. It took about 6-8 months of this therapy before i noticed any tangible results.

As for advice, all I can say is try and take things one day at a time (maybe others have suggested this to you). I used to let it dominate my life, but one cant let this happen! There are a few other HS people who write from time-to-time here. You arent alone and feel free to vent your frustrations here.

All the best for now,

stupidskin · 30-01-2011 9:15am

Hi
has anyone with HS suffered from a pilonidal cyst also?,

I just had 1 removed last week and it was left open for healing from inside out and the dressing is a foam dressing that basically fills the cavity of the area that was removed. (cavicare I think) anyway just wondering if any1 has experience witht these dressings as I am supposed to take it out and clean it 3 times a day an as they say just pop it back in !

that is not the easiest task in the world to perform and I am not normally that squeamish. I have had my axilla and groin surgeries done for HS in the past. But on this cavicare thing any advice?, I need to go and get a new one moulded next week

SS:cool:

chappy · 30-01-2011 1:13pm

Hi Stupidskin,

I have had 2 surgeries in the past 8 months to have a pilonidal sinus removed.Both of mine where left open to heal as yours have.I did not use the dressing you are talking about.I instead used aqualcell AG which the district nurse came daily to change.How big is your wound?

Hidradenitis Suppurativa

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