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,

Rodar08

I've had it for about 12 years now. I did post on here not so long ago regarding milton and roaccutane but there weren't many replies. We're fairly unique I guess!

I started off geting it in both arms but it completely left in my left arm years ago and was only ever in my right arm. I went on a course of roaccutane for 4 months about 8 years ago and the HS did leave for a good 6 or 7 years apart from the very very odd small lump. I also lost about 3 stone in weight and was eating a lot healthier. So about a year or so ago it started coming back in my arm and got fairly bad over the last few months but nothing I couldnt handle. (I have also not been eating as healthy and have gained about 2 stone back so I believe that diet and exercise are definate ways to manage this) I returned to my dermatologist and she put me back on roaccutane, this time for 8 months. However the HS has progressed over over the last 3 weeks and is now in my groin

I am devastated about this and thought after all these years that I was going to get away with it only ever affecting my one arm. In the space of 3 weeks 3 have appeard in my groin, the last two only in the last few days so it seems a bit rapid. I've been taking the roaccutane for about 3 weeks now but I did notice one lump beginning before I started on the roaccutane so I know its probably not related to the tablets.

The dermatologist also recommended I take 2-3 baths per week with a cup of milton in it. Apparently this has been effective in america for some people recently. I havent done this yet but if I had've taken her advice maybe the 2 recent lumps might never have appeared.

I would be really interested to know about the surgery. What does it involve etc. I am really wary of these roaccutane tabs because there are so many side effects. When I took them 8 years ago I only really had dry lips and skin but this time I seem to feel nautious, lathargic, my back gets sore, my skin seems drier, my throat is dry. These are slight so they are bearable but its annoying me a bit.

Have you tried roaccutane?

lockman

Hi,
Glad to hear from you: i was beginning to think i was alone on this...(feel free to send me a pm if you want)

Sorry to hear you have the HS, and for 12 years. As i posted earlier, i have had it for ~3 years now, but i have had a similar condition, called pilonidal sinus (more or less the same symptoms as HS, but the pilonidal sinus is usually confined to the backside/buttocks area). I have had the ps for ~20 years, and have had about ~6 operations on the backside over the year- i generally get a year or two free after surgery before it reappears.

As for my HS, it arrives with a bang and quickly proceeds to stage II/III. Generally speaking, by the time i get to see my derm or GP it has progressed so far in that time, that surgery is about the only option available to me.

So the only treatments i have received are antibiotics (for generally 3-6 months), and surgery. I found that the antibiotics were useless for me, even trying many different kinds.

The only other things i try would be frequent baths/ showers etc. I have gone from salt baths (for the ps) to mild antipsetic baths, and i now use te-tree oil in the bath. Not sure if it makes the slightest difference, but you do feel 'clean' afterwards.

As for me, i am a 35 yo male, not overweight or even heavy although i did put on a few stone just prior to the HS arriving in the first instance.

As for the surgery on the armpits, well it is not so bad or too sore. For the left armpit op, my surgeon did a skin graft (from my thigh) and first time it was successful. Getting dressings done every 2-3 days for ~6-8 weeks after surgery is the worst part of it. I also had to wear a splint and my arm and needed a bit of physio after that. So far so good though - i had this operation about 2 years ago and it has not reappeared there since- fingers crossed. In total, i spent two weeks in hospital, and called back afterwards every few days to get the dressings done.

The second surgery (on the right armpit) was a lot more problematic though - the graft (from my right thigh) didn't take well and i kept on picking up infections at the wound site, so that slowed healing down (6-8 weeks first time infection free; 2nd time, with infections, i was getting dressings for 4-5 months afterwards). To top it all off, the surgeons team kept on denying i had picked up an infection, so i had to frequently visit my gp to sort it out (plus the cost of each trip to the gp). This was done about 1 year ago and a few new lesions have just recently appeared in the area. Again, i spent about 2 weeks in total in hospital and called in to the clinic frequently afterwards for dressings

The 2nd surgery was a trial, overall, and i have reluctantly agreed to a third in the groin area. I have sfa other options open to me at this stage i think.

If you want to know anymore about the surgery, feel free to ask - the only really sore part for me was not the wound itself but the area from which the took the graft on the thigh - that hurt like hell, and itched a lot (they had my thigh bandaged heavily for ~10days - 2 weeks after the op). After they took the bandages off the graft site it was fine.

Like you, i too feel absolutely devestated by the appearance of the HS in the groin - i have about half a dozen lesions in the area (with a few on the scrotum) and they appear to be spreading quite rapidly. I find even going for a short walk hell now- by the time i get home it is a 'bloody mess' down there! So i hop straight into the bath and the tea tree oil..


So, no, never tried the roaccutane- how have you found it overall?

Rodar08

Sent you a PM Lockman...

LegacyUser

hi
i to was diagnosed last year with hs after approx 8yrs of ongoing abcess in armpits and groin areas. thankfully reading ur comments i dont appear to have it as bad as some people. i have had numerous minor surgeries for incision and drainage and removal of sinus tracts, following loads of different antibiotic therapies. i currently have an active flareup in left armpit which has been ongoing for last 4 months and nothing seems to be working this time despite all the different therapies i have tried. any ideas would be gratefully appreciated

lockman

Unregistered wrote: »

hi
i to was diagnosed last year with hs after approx 8yrs of ongoing abcess in armpits and groin areas. thankfully reading ur comments i dont appear to have it as bad as some people. i have had numerous minor surgeries for incision and drainage and removal of sinus tracts, following loads of different antibiotic therapies. i currently have an active flareup in left armpit which has been ongoing for last 4 months and nothing seems to be working this time despite all the different therapies i have tried. any ideas would be gratefully appreciated

Hi,
Sorry to hear you are suffering at the minute, and especially so in the armpit, which can be a right bugger.

Have you ever tried a bread poultice on the armpit? I used to find this was good at drawing out the build-up out of your arms, and it used to provide me with good relief, albeit just for a short time. Pm me if you want any more details on the poultice.

I also found changing the antibiotics every few weeks/ months helpful (in consult with a medic). Again, this occasionally worked for me in that it sometimes provided temporary relief.

All the best

LegacyUser

hi
thanks for the reply. I have tried the bread poultice to no avail. currently waiting on an appt to see the surgeon re removal(Again!)

stupidskin

Hi great to finally get to speak to people with the same condition, strangely for this condition I'm male, 36 now but have it for 20 odd years.
just to let you know I used to be plagued in the armpit, had surgery on one which was very successful, most of the area removed. I had great success using aloe vera stick deodorant and another deo that you get in boots part of the botanical range, this almost eliminated any issues with the other armpit. Also about 2 years ago I tried to see if diet could play a part so I started eating healthily, in all I lost about 3 stone from 13.5 to 10.5 and the groin cleared up.Then about months ago I quit smoking and put on about a stone a low and behold the groin is back and angrier than ever. Just met a consultant today no new treatments :{ (pissed off over that) 2 weeks of anti b (flux) to clear out after the horse has bolted. It is literally a pain in the ars* when you are dealing with work home kids etc and this at the same time. Be great if we could keep in touch as I'm sure you know this is not a nice condition and can be hard to talk about. One other thing anyone ever notice a breakout after going out for a few pints (this seems to be one of my triggers) wine fine beer bad?

take care

lockman

Unregistered wrote: »

hi
thanks for the reply. I have tried the bread poultice to no avail. currently waiting on an appt to see the surgeon re removal(Again!)

Hi again,

Sorry to hear about your armpit - let us hope that the surgery might sort you out and you will be right as rain afterwards. Best of luck with it, and you might let us know how you get on.

Take care

LegacyUser

www.hsfriends.co.uk

LegacyUser

stupidskin wrote: »

Hi great to finally get to speak to people with the same condition, strangely for this condition I'm male, 36 now but have it for 20 odd years.
just to let you know I used to be plagued in the armpit, had surgery on one which was very successful, most of the area removed. I had great success using aloe vera stick deodorant and another deo that you get in boots part of the botanical range, this almost eliminated any issues with the other armpit. Also about 2 years ago I tried to see if diet could play a part so I started eating healthily, in all I lost about 3 stone from 13.5 to 10.5 and the groin cleared up.Then about months ago I quit smoking and put on about a stone a low and behold the groin is back and angrier than ever. Just met a consultant today no new treatments :{ (pissed off over that) 2 weeks of anti b (flux) to clear out after the horse has bolted. It is literally a pain in the ars* when you are dealing with work home kids etc and this at the same time. Be great if we could keep in touch as I'm sure you know this is not a nice condition and can be hard to talk about. One other thing anyone ever notice a breakout after going out for a few pints (this seems to be one of my triggers) wine fine beer bad?

take care

http://www.hsfriends.co.uk/
Try this group for support

LegacyUser

I have just come accross this message and am glad im not the only one to suffer from this rotton smellie gross painful hidradenitis suppurativa. Have been suffering from this for 23 years and have just been told what it was as my gp or surgeon did not no what they were dealing with. I have them all over my body really bad in my armpits just a gaping open wound that stinks no mater what i do, the same in my breasts and down below. Dose anyone know what i can use when washing that will leave some kind of nice smell!!!!

Thanks

poondog

I have suffered from HS for the last 37years!!!!! I was only told what the condition was called about 10 years ago when I moved from England to Ireland. It is one of the most depressing and lonely illnesses you can have as, in the main, the symptoms are not visable, apart from the limping when you try to walk!
My GP here is wonderful and is willing to try anything I suggest to him. Am currently on long term steroids with a reducing weekly dose rate and this definitely relieves some of the pain.
Have just heard of a new drug which has had amazing results against HS in the USA called Infliximab which is used here to treat Rheumatoid Arthritis. It is only available through a consultant, not from you GP. I am hoping to try this very shortly. Has anyone else tried it? If so, would like to hear the results.

poondog

Forgot to say previously that I tried Roaccutane about 20 years ago - it was very much in trial then - and it was of no use at all. Dries your skin up to such an extent that the skin on my face started to crack. Any remedies you my have heard of have been tried by me and none work!!!
Let's hope this new drug is successful for us all.

Rodar08

I'm so sorry to hear your stories Poondog and Mols. I can't give much advice on your query Mols. The only thing I can say is that as far as I'm aware the smell is a sign that the wound is actually infected and if that is the case a course of antibiotics is needed. It really shouldnt be smelling all the time i think. Good luck with it and I do hope you get that part of it sorted at least.

Poondog I've also heard of a new treatment, I will look yours up now but ... here is an email I sent to two posters last night ...

I came across a new treatment for HS so want to let you know about it. I found a post on a forum from someone who had just been prescribed it by her dermatologist in Cardiff, Dr. Alun Evans. I looked him up then emailed him and he told me that he believed the treatment works well and is a possible cure for some patients. He said it was a relatively new treatment so not a lot of GP's or dermatologists would know about it. You can email him - just Google his name and you'll find his site on Dermatology in Cardiff. I don't have much info other then I Googled the drug combination and found some articles on the trials they had done and the results of the trials and stuff.
The drug combo is 300mg Rifampicin and 300mg Clyndamicin twice daily for 3 months.

Feel free to email Alun Evans if you have questions or anything. He emailed me back when I did and he was really helpful. I've just started the drugs 3 days ago and so far feel fine. The drug rifampicin is actually a TB drug and you may have difficulty recieveing it from your GP but if you print out the info and bring it along you should get it. The side affects are NOTHING compared to Roaccutane which almost made me want to commit suicide before I came off it 3 weeks ago. Thank god I feel fine now but whatever you do - don't try that med. It's way too risky with way too many side effects.

Hope you are well and pain free. Thank god I am at the moment.

LegacyUser

Rodar08 wrote: »

I came across a new treatment for HS so want to let you know about it. ...
The drug combo is 300mg Rifampicin and 300mg Clyndamicin twice daily for 3 months.

I was on that for 3-4 months, prescribed by Dr Patrick Ormond in the Hermitage near Liffey Valley. The side effects are better than Roaccutane (from what I've read, haven't tried it), but they're still there. It's very harsh on the liver, so they'll send you for Liver Function Tests in advance. It can turn you orange. Your pee will definitely go an interesting colour, but it can affect the skin and the whites of your eyes as well. I changed colour a little bit, but nothing drastic or too noticeable. The worst side affect I had was a rather severe personality change - I became extremely aggressive. Now, my friends tell me I didn't say anything that other people didn't wish to say, but it was rather shocking to me. The two worst incidents were when I shouted at a customer in a shop who was being rude to the cashier, and holding everyone else up while doing it, and when I yelled at a supermarket worker who'd given a beggar a slap for no apparent reason. I'm not proud of myself - in hindsight those people may have deserved to have something said to them, but probably not to be shouted at. I thought I was going insane for a while until my GP asked if I was having any aggressive outbursts.

It doesn't specifically stop you drinking, but you'd want to be extremely moderate in your intake - a couple of units a week at a push, none at all if you can help it. You'll need follow up LFTs during and after treatment.

It worked well for me after a few weeks on it, everything cleared up fairly nicely (though I was left with some scaring). I've been off it for a few months though, and just last week the HS has started to come back. It's not as severe and explosive as it was, but I'm getting back to the point where walking can be quite uncomfortable some days. I'm feeling very down about this - the doctor said you'd really only want to be on that course once a year. For various reasons he'd rather not operate, I don't want to go on roaccutane, so I'm just sitting here feeling miserable about the whole thing. I have just bought a bottle of Miltons to see how that goes. I still have an unopened bottle of Hibiscrub (which you can ask for in a chemists) so I might go back to that again.

The idea with the Hibiscrub is to get wet in the shower, then turn off the water and lather yourself all over with it - including washing your hair - complete head to toe. Then stand there for 5 minutes, then rinse off. To be honest I'm not sure that did much good, but I'm desperate.

lockman

Rodar08 wrote: »

I'm so sorry to hear your stories Poondog and Mols. I can't give much advice on your query Mols. The only thing I can say is that as far as I'm aware the smell is a sign that the wound is actually infected and if that is the case a course of antibiotics is needed. It really shouldnt be smelling all the time i think. Good luck with it and I do hope you get that part of it sorted at least.

Poondog I've also heard of a new treatment, I will look yours up now but ... here is an email I sent to two posters last night ...

I came across a new treatment for HS so want to let you know about it. I found a post on a forum from someone who had just been prescribed it by her dermatologist in Cardiff, Dr. Alun Evans. I looked him up then emailed him and he told me that he believed the treatment works well and is a possible cure for some patients. He said it was a relatively new treatment so not a lot of GP's or dermatologists would know about it. You can email him - just Google his name and you'll find his site on Dermatology in Cardiff. I don't have much info other then I Googled the drug combination and found some articles on the trials they had done and the results of the trials and stuff.
The drug combo is 300mg Rifampicin and 300mg Clyndamicin twice daily for 3 months.

Feel free to email Alun Evans if you have questions or anything. He emailed me back when I did and he was really helpful. I've just started the drugs 3 days ago and so far feel fine. The drug rifampicin is actually a TB drug and you may have difficulty recieveing it from your GP but if you print out the info and bring it along you should get it. The side affects are NOTHING compared to Roaccutane which almost made me want to commit suicide before I came off it 3 weeks ago. Thank god I feel fine now but whatever you do - don't try that med. It's way too risky with way too many side effects.

Hope you are well and pain free. Thank god I am at the moment.

Hi all,
Thanks a lot for the mail and for the information regarding new drugs and therapies.
I have experience of this treatment having been prescribed the 300 mg Rif/Clyn combination in the past (2006). I was given this just a few months after been initially diagnosed with HS. It made very little difference to me if i am being honest. In the first few weeks after taking it, the amount of pus exuding from my HS lesions dropped a small bit, but after that there was no real notable effect.
I experienced some side effects of the Rif/Clyn. combination i.e. a touch of diarrhoea, general feeling of being unwell, reduced appetite etc. but these reduced over time. I finished the 3 month course and the HS had spread quite a bit in that time. That was just my experience of it. From what i have read about it, in some (like me), it doesn’t work but in others it can make a difference. Hope you have a positive experience with it.

By the way, from what i have read the Rif/Clyn combination is not really a new treatment as it has been used for many years on HS sufferers around the world.
All the best to all HS sufferers on the forum

Rodar08

Hi Lockman. Aw I'm so pissed off. I'm not gonna bother taking this combination I think as Poondag said it made no difference either. My brother n law is taking that drug you mentioned Poondog, he calls it Remacade but it's the same thing as the one you mentioned. He takes it for Chron's desease. I might look further into this treatment. I've heard about it as a treatment for HS before. Are you taking it introveniously (spelling) Poondog? Did you have much trouble getting prescribed the treatment? How often to you have to go to the hospital to get it and for how long?

How've you been Locman? I'm doing good at the moment but I'm sooo frustrated today that there is no cure for this f**king thing. Rant over lol.

poondog

Hi Lockman & Rodar,
My sister has only just found out about this drug on the web in the USA so forwarded the info to my Doc who is now writing to a dermatology consultant at Limerick hospital to get it organised. I actually saw this consultant about 10 years ago and was told by him that the only treatment for HS was surgery. Having had my whole left armpit removed back in 1979 was not really interested in this. As someone else said, it's not where they graft but where it's taken from that is soooooo painful and the smell after 10 days!!!!!!!!!!!! To my thinking, if your body is producing this stuff, it has to go somewhere and, if you keep taking it's outlet away, it will just find another place to erupt from. Could be wrong.
Anyway back to this new therapy. My Doc said it's incredibly expensive and, if I do get prescribed it, he will try to get me a medical card. Even if I have to pay the 100 euro a month it would be worth it to get rid of this.
If you want and are willing to give me your e mail addresses, I can forward on the info from the trials, results, etc that have been carried out in the US on this. Have any of you tried the long term steroid treatment that I am on at the moment - it seems to work but, again, is experimental at the moment.
Hopefully, if we keep on sharing information, at some point we will beat this.

eireanbo

hey just found this site...am geting groin surgery next week an skin graph really nervous bout it can u walk after it..is it very sore after.did you think it was worth it..

lockman

eireanbo wrote: »

hey just found this site...am geting groin surgery next week an skin graph really nervous bout it can u walk after it..is it very sore after.did you think it was worth it..

@eireanbo,

Glad you found us- welcome. And desperately sorry to hear you have this dreadful condition.

Havent had the groin done yet myself, but i have had both armpits done, so here goes my experiences:

The site from which they take the graft (donor site, probably your thigh i imagine) can be troublesome. In both of my surgeries, the donor site was painful, sore, and incredibly itchy after the surgery. It is more annoying and irritable than downright painful. Approx 1 week after surgery, the donor site was fine, and a few days later they took off the dressings. it will look raw and red for a bit but it reverts back to normal in no time at all. After they took the dressings off, they reccommnended a therapeutic moisturising cream, which helps a lot also.

As for the actual site of surgery, for the first few days after surgery i was on so much painkillers i barely noticed it: it can become tender and painful, particularly when they do a dressing. The first one or two dressing changes are the worst, after that it gets a little easier each time. You will probably get a dressing change every 2-3 days, and this is reduced in frequency (i.e. maybe once or twice per week) over time. All going well (i.e. no complications), the site should be healed in ~6-8 weeks - i.e. no more dressings. Dont know if you will need physio after - i found this quite tough to be honest (but that is someway down the road).

Again, just want to stress that i havent had the groin are done yet, as i am awaiting it. But was the surgery in the armpits worth it? Absoloutely. I cannot stress enough how much it has improved my quality of life, and especially my self-esteem issues (no more foul discharge and blood from the site). I felt like a new person after it: if i was to advise you, i'd say go for it as whatever happens, it certainly cant be as bad as just letting it off to its own devices.

The very best of luck with the op, and i sincerely hope it works out well. If you like, feel free to pm to ask any further questions

Best Regards,
Lockman

eireanbo

hey thanks for reply...so looking forward to surgery now..i see from your other posts you have this bout 3 years has it spread much in this time..mine seems to spread in hours..looking forward to surgery but no it will just pop back up again one day i think once you have it you have it...have you ever tried tumeric(spice)capsuals apparantly suppose to be great for healing them up,havnt tried myself but will do..were did you have your surgery im having mine in vincents next wk.....

chappy

Hi everybody..what a relief to know I'm not completely alone.I'm 25 and have been suffering with this condition since I was 10.Due to my family moving around a lot when I was younger I was mis diagnosed for years with everything from acne to PCOS.Was finally diagnosed about 8 years ago.

I would normally have 20-30 lumps at a time..I suffer with them under both arms,my bum,groin and in the past few years under my breasts.When I was younger I also got a couple on my face.At this stage my body is covered in scarring!!!It's so isolating because anybody I have tried to explain it to seems to think I am over reacting cos "they are just a few spots"...my entire life is ruled by this illness.I have tried every combination of meds,antibiotics,steroids, etc including roaccatine(??) which was an absolute joke.

If this horrblething isn't enough I also suffer from pilonidal sinus which I will be getting operated on shortly.My dermatologists just keeps referring me for more tests and whenever I mention surgery she fobs me off.Has anybody dealth with any docs in the Dublin area that they have found helpful?

I hope your all in less pain at the moment then I am...

chappy

poondog

Don't give up. 37 years later I have been told of a new treatment and am currently waiting to start this at Limerick. This is not your ordinary "pills" etc You have to have an iv drip for two hours every two weeks, then every eight weeks. They currently have 6 "patients" on this treatment and everything is working out. I hope to start it on March 18th, BUT, you must have no underlying diseases as it's an immuno-suppressant so, if you have had TB or HIV or any thing like that they cannot implement it. You will be given loads of tests, a TB test and chest x-rays before you can begin. You also make sure that all your vaccinations are up to date, including one for swine flu as, if you were to contract anything whilst you were on the treatment, it would be 10 times worse than normal.
If your local dermatology consultant cannot do this, suggest you contact Dr Ramsay at Limerick who is brilliant.
Will post results as they happen!!!!!!!!!!!!!!!
Poondog

lockman

chappy wrote: »

Hi everybody..what a relief to know I'm not completely alone.I'm 25 and have been suffering with this condition since I was 10.Due to my family moving around a lot when I was younger I was mis diagnosed for years with everything from acne to PCOS.Was finally diagnosed about 8 years ago.

I would normally have 20-30 lumps at a time..I suffer with them under both arms,my bum,groin and in the past few years under my breasts.When I was younger I also got a couple on my face.At this stage my body is covered in scarring!!!It's so isolating because anybody I have tried to explain it to seems to think I am over reacting cos "they are just a few spots"...my entire life is ruled by this illness.I have tried every combination of meds,antibiotics,steroids, etc including roaccatine(??) which was an absolute joke.

If this horrblething isn't enough I also suffer from pilonidal sinus which I will be getting operated on shortly.My dermatologists just keeps referring me for more tests and whenever I mention surgery she fobs me off.Has anybody dealth with any docs in the Dublin area that they have found helpful?

I hope your all in less pain at the moment then I am...

chappy

Hi,

Sorry to hear you have HS. And you certainly appear to have it bad. You certainly are not alone in suffering from the HS. There are a few of us on this site and hopefully this thread might encourage others out there who have it to add their experiences here.

Like you, i too have also have pilonidal sinus, and have had for about 20 years. There are reports out there of people with HS also having pilonidal sinus.

Have you tried any of the anti-TNF therapies that are becoming available? There are some encouraging reports in the literature about their efficacy.

Feel free to pm me if you want any more information.

Best Regards,

LegacyUser

Hi all, i am 38 year woman and have had it HS for 25 years. It started under my arms then went to my groin then progressed to under my breasts and now only active on the middle of my chest, so no low cut dresses for me. I have been treated by many consultants in Dublin over the years from Hume Street to the Mater Private and Tallaght Hospital. I think i have used every drug going, from Roaccutane when I was in my 20's, which was very successful in clearing up under my arms and groin to the combination drugs Rib and Cly about 6 years ago, which i have to say did no real good and I had two miscarriages in the 4 years after taking these drugs for 3 months, maybe not related but given i have two healthy babies prior to taking these drugs I wonder. I have had minor surgery on my chest and in recent years my GP has prescribed Flagyl antibiotic to clear up any flare up that gets infected. I do find it is the only antibiotic that works. When the wound heals I then put a steroid cream on it and while this makes the skin very thin, it seems to help also. I also use a bread and salt poltice to help draw out the muck but I put manuka high strength in to the mix which I believe helps the wound to heal quicker. I am currently living with a very painful lump on my chest with the lovely green smelly pus daily pouring from it. It is so gross and I am so sick of it. I wish I could just cut it all out but my surgeon said it would just come back even if I cut away all the skin. Thankfully i have a very understanding husband, I never thought I would every find anyone to love me with this condition but he is truly supportive.
It is great to hear other peoples stories and feel that I am not the only one in Ireland with this disease.

poondog

Hi everyone,
My consultant told me something very interesting the other day. HS in not caused by infection!!!!! It's caused by inflammation which produces infection. So, if you get rid of the inflammation, the infection will reduce. Where ever you are, try to get on the Infliximab programme (you won't be able to do so if you are in the Limerick region - no-one else is being accepted). I have had 4 infusions so far and it's like a miracle after 38 years of pain and, let's be honest, disability. If we all push like h*** for the government funding to be re-instated for this treatment you will realise that there is life after HS!
If there is no possibility of getting this treatment, go for steroids. Antibiotics are useless because they don't treat the inflammation.
Poondog

eireanbo

hi all

i only had my surgery wide excision an skin graph on groin in feb my god the hs was back in matter of wks in surgery area..waiting to go in for my second round of surgery on groin(only place i have it so far)..i have feeling im going to get this bad over next few years its flying up all over the groin now..ive given up taking anything for it everything i take doesnt work so whats the point..

having my surgery in vincents was waiting 9 months first time to see doc then 4 months after for first surgery...was suppose to be only waitng 2 wks now for my 2nd surg im now on 7th wk an no word when i ring they just say nothing we can do..what anoys me the most is that this disease is all about time with me its getting bigger by the day which means another skin graph now...

bye all..

poondog

Forget surgery. I had one of my armpits removed around 1979 and it just moved somewhere else - all over in fact. You can go on having half your body removed and it will always find another place to invade. (Hence "Hydra". In mythology, Hydra was the snake that, when its head was cut off, it grew three more).

The only thing that works for this is the Infliximab infusions or, if you can't get them, steroids to stop the inflammation which causes the infection. Know I am repeating myself but, unfortunately, it's true.

Still haven't heard if anyone else is on these infusions.

Poondog

Skinnysue

HI GUys!! I just stmbled accross this discussion now, have had HS mainly in groin and arond my ass for 10 years, Ive always been treated with antibiotics and surgery. Ive just had another big chunk of me removed and hope this is the last time.
Ive spent days crying about this and being frustrated with doctors for having no answers etc, and Id started to really let it get me down. Im a 26 year old woman, and had until recently let this affect e so much that I wouldnt let myself even try to get a boyfriend. I hadnt had sex in a year!! After hitting a low, serious low like im going to die alone with horrible smelly boils everywhere , I decided to change my lifestyle and outlook on this whole condition.
I have a lovely boyfriend now who understands my condition and has acepted it. People are much more understanding than I thought they would be, work people being very nice, friends and family etc. previously I was way too embarresed to tell anyone and made up all sorts of excuses. Now I tell people who ask and they go ewwww pull a face, but thahts it, no big deal, everyone is really supportive and kind if they understand whats wrong.
So I quit smoking 6 weeks ago, I think this is a huge contributing factor to HS. I went to hypnotist, (last resort i had tried everyting, was a pretty heavy smoker) Now If i even think of having a cig Ill thing of another abcess forming and well I havent smoked since 28th May.
Im not going to change my diet too much, eat more fruit, yoghurt and Im going to start drinking aloe vera juice, had a taste the other day, not bad at all. And drink loads of water.
When Im all better from this op, im gonna start properly exercising, like breaking a sweat, then straight into shower with lavander and tea tree oil shower gel. Fresh clean towels everytime , I know its wasteful but I think its important to prevent bacteria spreading.
I really think and believe I can clear out my body and get it to regulate by taking better care of myself. Im giving myself 6 months of no doctors and alternative treatments, like going to the gym for a sauna, gonna try the sea baths in sligo, heard they're great for skin, detoxifying massage once every 2 months (same price as GP visit!)
Im taking lots of garlic , echinacea and zinc at the moment.

Has anyone tried anything like this before? Or am i being very idealistic?

Also for anyone with horrible boils, I sometimes soak a piece of gauze in salty water with tea tree oil and pop it on the boil with a disposable hand warmer over it( think they're for hiking or golfing or something got them in millets). Its like a hot compres but u can leave it on for a few hours if you're watching a movie. It works for me!

poondog

Hi Skinnysue,
Thanks for your mail. I really, really hope this works for you. I tried alternative therapies a long time ago when I still lived in England but nothing worked.
The only thing that is working for me is the Infliximab infusion but I know that it's just about hopeless to get onto the programme now because of government cut backs.
Wish you the best of luck and let me know how you get on.
Poondog

charlie1985

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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