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29-07-2009, 14:55   #1
lockman
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Hidradenitis Suppurativa

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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03-08-2009, 01:08   #2
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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?
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03-08-2009, 15:02   #3
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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?
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03-08-2009, 16:17   #4
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Sent you a PM Lockman...
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08-08-2009, 13:05   #5
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hs

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
 
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08-08-2009, 14:07   #6
lockman
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Quote:
Originally Posted by Unregistered View Post
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
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18-08-2009, 19:22   #7
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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!)
 
20-08-2009, 23:28   #8
stupidskin
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Finally

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
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21-08-2009, 14:27   #9
lockman
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Quote:
Originally Posted by Unregistered View Post
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
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29-09-2009, 08:42   #10
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HS Friends

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10-10-2009, 18:15   #11
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Quote:
Originally Posted by stupidskin View Post
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
 
26-10-2009, 23:37   #12
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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
 
11-11-2009, 12:36   #13
poondog
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HS

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.
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11-11-2009, 14:14   #14
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HS

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.
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11-11-2009, 17:14   #15
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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.
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