Hidradenitis Suppurativa

lockman · 31-03-2012 4:20pm

seabre wrote: »

Hi All
Just checking in here again as I am currently sitting up n bed as I cannot lie down! I have a Golf ball sized boil under my arm which is connected underneath the skin to several smaller hard lumps and am in so much pain i am sick to my stomach!

As I am prone to do in these outbreaks I am trawling the net for new updates re HS since my last seriously bad outbreak (although I have had some degree of pain and constant seepage since Oct 2011 from this ampit. I see a discussion on one of the site I browsed tonight (dont ask me which one) about the benefits of Tumeric? Just wondering has anyone else tried it or found it beneficial?

I am also really beginning to notice the relativity of stress in this disease - I had a baby in Oct last year and with all the stress and work that it brings maybe this is the cause of having the problem so constantly since then?

Feel bad when I read over that last paragraph cause I have never been happier but I hope you know what I mean as regards the "overdrive" I have been in since my 3rd little babba came! I am also due back to work in april from my maternity leave and am freaking out a bit as it would in no way be possible for me to go back in the condition Im in right now and although i prob shouldnt give a sh*t I really dont want them all talking about me should I have to go out on sick leave straight away1 That said I haven't been able to wear a bra since Sun & Im sure they'd do a lot more talking baout me should I turn up at work without one!!! lol:D:D:D

It did occur to me though do any of you know are there any effective painkillers for the excruciating pain we go through that would get me through the day at work if it comes to that?

Anyway hope you are all as well as can be - Goodnight:rolleyes:

Hi Seabre,

Nice to hear from you again. My thoughts are with you having HS in the armpits. I distinctly remember going through a torrid time when i had the condition in the armpits. Not being able to raise my arms above shoulder height and so on. There were many sleepless nights tossing and turning trying to find the least painful position to lie in.

For what its worth, i had extensive surgery on both armpits (wide-scale excision and skin grafting) back in '07 and '08. Thankfully, it has not come back there since! It has popped up elsewhere though.

RE: turmeric; some people on of the facebook groups (mentioned in post #93) swear by it. A lot of the people there incorporate it into their food, take it as a supplement and so on. There is a lot of anecdotal evidence to suggest turmeric helps with HS, but the evidence is just that, anecdotal. Different strokes etc.

RE: stress and HS. Well for me there is a strong connection. I was in a very stressful job up until '09 and the HS was terrible up until then. Since i have gotten out of that line of work, there has been an improvement of sorts: the HS seems to have slowed down in its spread. In saying that though, my medications have changed consideably in that time, so it could be a combination of things and so on.

Congratulations on the recent addition to the family!

RE: pain. My derm doesn't want to know about it - his eyes generally glaze over when i mention pain-relief and management. I know there has been a big crackdown of late in the health service for what can and cant be given out without a prescription. Maybe talk to your doctor about the best options to deal with this?

Sorry i couldnt be of more help on that one.

Best wishes,

lockman · 31-03-2012 4:23pm

rhyrhy wrote: »

Hi guys, My name is Rylan and I am 22 years old, I am from Australia and i believe my mother, myself and older brother suffer from HS. Ive had the condition since i was about 9 and have not yet been diognosed. From what ive read i definitely believe i suffer the same problem. I have the cysts come up in so many different parts of my body, groin area,inbetween the ginital and arse area, behind knee caps, tail bone, on my arse, armpits, back, sides and back of my neck are greatly effected. on my elbow, also on the fold of the arm between the forearm and bicep. ive even had them come up on my cheek area aswell as just under my jaw. Had one on my head at one stage and left a bald patch which luckily has grown back. I really thought my family were the only ones, noone without the condition will ever understand how painful and depressing it is, it effects everything mind and body. Ive had one cut out of my arm that still comes up and down so obviously the whick they were using to draw it out once cut didnt work, other than that ive had no opperations only antibiodics which seem to only work when the infection is bad, just recently i have had one on my elbow come up and it literally made my whole forearm swell and bruise. the anti biodics have taken the swelleing and redness down but the cyst still remains. There seems to be no escaping this, although i havent tried things you guys have, everything i read doesnt seem to work for anyone too well. just today i bought some potassium permanganate from my chemist so im going to try bathe some smaller effected areas in that so heres hoping. but there is no fixing the scars unfortunately. I would love to hear from you guys , its such a relief to know there are others out there who understand. Feel free to email me any one
rhi_richardson@hotmail.com

Rylan,

Might i suggest you talk to your family doctor about this problem you are having? Your doctor can refer you to a dermatologist. Generally speaking, it is a dermatologist who will be able to confirm HS or give you a different diagnosis.

Regards

lockman · 31-03-2012 4:31pm

Skinnysue wrote: »

Hi guys,
Im stage 3 now unfortunately :mad:
I started humira 4 weeks ago, After recovery from hopefully final surgery. got a new lesion and i was freaked out, it swelled up overnight, but it didnt get infected and is now nearly gone. normaly it would be there for ages and have to be operated on.
Hopefully it is the humira kicking in , anyone else used humira and any success stories?

My doctor recons i will respond to humira and although ill always have it, I might go back to stage 1.

Hi Sue,

Thanks for the update. Gutted to hear your HS has advanced so much. Really, really sorry to hear this.

I am on infliximab, a sister drug of Humira, and it has made a massive difference to my condition. Although it did take a long time to kick in (9 months- 1 year) properly for me and to see any real benefit.

In the medical and scientific literature there have been recent reviews on the use of these drugs, and the reports back seem very promising for them in a lot of HS cases.
For instance, you can read an abstract of a very recent review in one of the dermatology journals here:
http://www.ncbi.nlm.nih.gov/pubmed/22397574

[Note, adalimumab is the scientific name, and Humira is the trade name of the same drug; see second last line in abstract for some encouraging news on Humira/Adalimumab]

Keep us posted on your progress with humira, and the very best of luck with it.

Bst wishes,

lockman · 31-03-2012 4:33pm

rhyrhy wrote: »

Hi guys, My name is Rylan and I am 22 years old, I am from Australia and i believe my mother, myself and older brother suffer from HS. Ive had the condition since i was about 9 and have not yet been diognosed. From what ive read i definitely believe i suffer the same problem. I have the cysts come up in so many different parts of my body, groin area,inbetween the ginital and arse area, behind knee caps, tail bone, on my arse, armpits, back, sides and back of my neck are greatly effected. on my elbow, also on the fold of the arm between the forearm and bicep. ive even had them come up on my cheek area aswell as just under my jaw. Had one on my head at one stage and left a bald patch which luckily has grown back. I really thought my family were the only ones, noone without the condition will ever understand how painful and depressing it is, it effects everything mind and body. Ive had one cut out of my arm that still comes up and down so obviously the whick they were using to draw it out once cut didnt work, other than that ive had no opperations only antibiodics which seem to only work when the infection is bad, just recently i have had one on my elbow come up and it literally made my whole forearm swell and bruise. the anti biodics have taken the swelleing and redness down but the cyst still remains. There seems to be no escaping this, although i havent tried things you guys have, everything i read doesnt seem to work for anyone too well. just today i bought some potassium permanganate from my chemist so im going to try bathe some smaller effected areas in that so heres hoping. but there is no fixing the scars unfortunately. I would love to hear from you guys , its such a relief to know there are others out there who understand. Feel free to email me any one
rhi_richardson@hotmail.com

Rylan,

Some excellent resources and info on HS here:
http://www.ba-hs.org.uk/

Best wishes

funnymunny · 25-07-2012 9:21pm

Hi all,

I see there has been no activity on this thread since march but I am going to post anyway. Not really looking for info as such but last time I looked up this condition I didnt find this site, which is a pity as i thought I was the only one suffering this intolerable disease. i am a 38 year old female and have suffered with this condition since my early twenties. i am now at stage three and while I have it fairly severely in my armpits I consider myself very lucky as I only get the occasional outbreak on my groin and at the moment it is confined mainly to my right armpit.

I attended a dermatologist many years ago in my local bons and at that point she told me it could be worse and to just live with it. I wish she had given me a surgery option then, before it got worse and before I had my children.

Some years later I was referred to a plastic surgeon, again in my local bons and as he poked and prodded what was obviously an infected and painful area he told me i was a definite candidate for surgery. He was very honest though and said there was no guarantee that it would not come back, that the skin graft would take, that the grafted skin wouldnt die or that i wouldnt lose mobility in my arm. I decided against the surgery option at that time and plodded on.

I stopped taking antibiotics as I became immune and all they did was give me awful thrush. I found that when i got an unbearable inflammation, if i took two panadol and rode it out for a day, it would burst and while it would weep for a week (although im sure many of you know, there is constant seepage of some level), the pain would be managable.

I was told that pregnancy may worsen the condition, but it improved, until I had my first baby. I got an awful outbreak two or three weeks after he was born and my gp, who was familar with hs, referred me to a plastic surgeon in blackrock, as he felt i was at risk of secondary infection from open wounds. Much the same story as before, it was not a surgery to be taken lightly although she did say that the skin around the area was good and she may be able to excise the worst of it and stitch it together without having to resort to grafting. While i was mulling this over I got pregnant again and now have a two and a half year old and a four month old, so surgery is out for another few years as I just couldnt do the six week recovery period or the physio needed to retain arm mobility. I had such a terrible outbreak again recently that i had to go for an antibiotic, i just couldnt function and felt physically sick. I also got quite down mentally which was terrifying as I didnt know if it was the start of post natal depression. The antibiotic didnt work so i has to go back and was prescribed a three month course of flagyl. I dont know if this is working or if this particular outbreak had just run its course but it has cleared totally with no seepage. In addition to the antib, i read about tumeric capsules here and i have been taking two a day for the last week.

I also wanted to mention about mental health. There is no doubt that it can be soul destroying and ruin your self esteem. As a woman, i have been unable to shave/wax etc under my arms for the last two years, wHich some might say is the least of my worries but nonetheless, it is next to impossible to get nice summer clothes/dresses that are not sleeveless, not to mention the distress of smell and staining. Anyway, i digress slightly, in relation to maintaining mental health, a friend recimmended a natural remedy, in my case to ward off the baby blues. She had been recommended when she felt she was slipping into depression. It is called rhodiola and i have found it superb, and it has lifted my mood greatly. You can get it in any health food shop and the brand is solgar. You should take it in conjunction with a vitamin b supplement. I couldnt recommen it highly enough.

Sorry for the length of the post but as previous posters have mentioned it is good to know that i am not alone.

seabre · 25-07-2012 10:53pm

Hi @Funnymunny!

I just read your post and honestly you could have been describing my life! I could relate to every single point you made our situation is so similar - 3 babes and all!

Thankyou for posting those remedies you have found to be helpful its great to bounce ideas around as the disease is so little known even among medical professionals! There are also Facebook support pages which I find great - Thy are closed for privacy but if you click on the following link and send a message saying you found the page through here you should be able to join the group.

https://www.facebook.com/groups/356488521057122/

Good to be in touch!

funnymunny · 27-07-2012 10:13pm

Hi Seabre,

Thank you so much for taking the time to reply. I have requested to join the group whose link you gave me. I hope all is well with you at the moment.

Funnymunny.

lockman · 16-08-2012 6:41pm

Hi all,

FYI, a group has recently been set up on facebook, "hidradenitis suppurativa ireland". As the name suggests, it is specifically for those in Ireland with HS.

Link:
https://www.facebook.com/hidradenitis.suppurativaireland

lockman · 26-09-2012 8:51pm

lockman wrote: »

Hi all,

FYI, a group has recently been set up on facebook, "hidradenitis suppurativa ireland". As the name suggests, it is specifically for those in Ireland with HS.

Link:
https://www.facebook.com/hidradenitis.suppurativaireland

FYI, this group are planning a meet-up for HS sufferers based in Ireland. The meet-up is provisionally scheduled for the end of February, 2013. At the moment it looks like it will take place in Athlone.

More details anon, or check the link above to join this group.

sprig · 13-11-2012 8:05pm

Jesus where to begin.
I am a 34 year old male.
Since i was a small child ( like four or five) i have consistently had severe boils under my left armpit. Over and Over and again. In my teenage years i had savage acne all over my face neck and torso. Really really angry acne that could not be cured in any way on top of the underarm boils.
From my early teens i have re occurring Pilonidal abbcess / sinus ( i feel for anyone with this condition ) and have had so many many painful operations done on this that i cannot even remember how many have been preformed.

Since my early twenties i have begun to get boils on other parts of my body also in all of the places described on this thread and then some.
At the moment i have them on my underarm, my groin, and on both sides of my face and on places i am not going into on a public thread. Gradually, they seem to be worsening and spreading over time. The ones on my face are particularly bad and i have to continually excise them every other day for several years now to stop them turning into freaky golfball size evil boils. There are several lines of sinus in them connecting poly something cists on my cheeks ( hidden by a beard for years) to the boils on both sides of my face below each of my eyes. These ones affect me on so many levels that it is impossible to describe. I earn my living as a musician and have in the past had to perform on stage with golfballs on my face.

In over 20 odd years of dealing with these boils and gp's I have never been reffered to a dermo... and always been told to just get on with it and that it was poor hygiene etc... Often leaving doctors offices feeling very very depressed over thier comments.
, i have never taken a drug that has had any effect. Reading this thread all the drug names were so so familiar to me, with the exception of the immune type iv ones, i have tried all of them including the EVIL ro accutane ones and the SUPER EVIL tettracyclene ones ( that cause severe depression in a lot of peoples)

This past week my gp finally reffered me to a plastic surgeon about the golfball under my arm and she took one look under my arm and at my groin and diagnosed HS.
At the time i was very glad she had a name to put on it as i have always felt like some kind of a freak and have long since given up hope of a diagnosis. after googling it i found this thread and now after some reading i almost wish that she had not done so as it doesnt seem there is a cure at all.

It looks now like i will have underarm surgery between now and christmas and groin surgery in the new year at some stage. I am not really bothered about this as surgery and hospital have become a regular part of my life due to the pilonidal thing....
That said my deep rooted scepticism of doctors ( with good reason ) leaves me wondering if its even worth it now.

My feeling is if i cut off one head of the snake its just gonna pop up somewhere else either way.
Looking at what the future holds i feel frightened now, not just frustrated.
Initial joy of a diagnosis well and truly gone..
Dunno what else to say really....
If anyone has any info on how puss forms in the body i would like to see it.....
Regards
D

lockman · 14-11-2012 7:05pm

sprig wrote: »

Jesus where to begin.
I am a 34 year old male.
Since i was a small child ( like four or five) i have consistently had severe boils under my left armpit. Over and Over and again. In my teenage years i had savage acne all over my face neck and torso. Really really angry acne that could not be cured in any way on top of the underarm boils.
From my early teens i have re occurring Pilonidal abbcess / sinus ( i feel for anyone with this condition ) and have had so many many painful operations done on this that i cannot even remember how many have been preformed.

Since my early twenties i have begun to get boils on other parts of my body also in all of the places described on this thread and then some.
At the moment i have them on my underarm, my groin, and on both sides of my face and on places i am not going into on a public thread. Gradually, they seem to be worsening and spreading over time. The ones on my face are particularly bad and i have to continually excise them every other day for several years now to stop them turning into freaky golfball size evil boils. There are several lines of sinus in them connecting poly something cists on my cheeks ( hidden by a beard for years) to the boils on both sides of my face below each of my eyes. These ones affect me on so many levels that it is impossible to describe. I earn my living as a musician and have in the past had to perform on stage with golfballs on my face.

In over 20 odd years of dealing with these boils and gp's I have never been reffered to a dermo... and always been told to just get on with it and that it was poor hygiene etc... Often leaving doctors offices feeling very very depressed over thier comments.
, i have never taken a drug that has had any effect. Reading this thread all the drug names were so so familiar to me, with the exception of the immune type iv ones, i have tried all of them including the EVIL ro accutane ones and the SUPER EVIL tettracyclene ones ( that cause severe depression in a lot of peoples)

This past week my gp finally reffered me to a plastic surgeon about the golfball under my arm and she took one look under my arm and at my groin and diagnosed HS.
At the time i was very glad she had a name to put on it as i have always felt like some kind of a freak and have long since given up hope of a diagnosis. after googling it i found this thread and now after some reading i almost wish that she had not done so as it doesnt seem there is a cure at all.

It looks now like i will have underarm surgery between now and christmas and groin surgery in the new year at some stage. I am not really bothered about this as surgery and hospital have become a regular part of my life due to the pilonidal thing....
That said my deep rooted scepticism of doctors ( with good reason ) leaves me wondering if its even worth it now.

My feeling is if i cut off one head of the snake its just gonna pop up somewhere else either way.
Looking at what the future holds i feel frightened now, not just frustrated.
Initial joy of a diagnosis well and truly gone..
Dunno what else to say really....
If anyone has any info on how puss forms in the body i would like to see it.....
Regards
D

Sprig/D,
Glad you found us here. And I am truly sorry to hear you have been diagnosed with this condition, and have suffered from it for so long.
You are most definitely not alone in having this condition.

You are probably feeling a little overwhelmed by the diagnosis, and the amount of information you have to take in. I found the following to be a great source of information about HS,

http://www.hstrust.org/info.html

This is a very good source of information on the disease and is provided by the Hidradenitis Suppurativa Trust (until recently this group was known as the British Association for HS). They will be able to help answer a lot of the questions you may have. They are also quick enough to respond to emails and the like, should you have some questions that aren’t dealt with on the site.

Fyi, the HS trust states that HS is not caused by poor hygiene. See link below:
http://www.hstrust.org/qanda.html

The HSF (HS Foundation in the USA) claims there is absolutely no evidence to back up the poor-hygiene assertion:
http://www.hs-foundation.org/abouths/treatment.htm

From this site:
‘There is no evidence for common and erroneous social and medical views and judgments that HS results from a lack of hygiene or as a result of socially unacceptable behavior, yet these views that people with HS struggle with often lead them to suffer in silence.’

Another fairly good source of info would be the New Zealand Dermatological Society website, DermetNZ:
http://dermnetnz.org/acne/hidradenitis-suppurativa.html

You will find many links here to help you.

With respect to surgery, I have had it done on both armpits, the backside and indeed the groin area. Had my armpits done in 2007 & 2008, and this has been very successful for me (no HS in the armpits since thankfully). The backside and the groin have been different stories. I tend to get a few years of a good run in the backside before it reappears. The groin I have had done just this year, but that wasn’t much of a success (the HS has popped up again there) and am due more surgery on the groin soon. Just thought i’d share my surgical experiences with you. Different strokes and all that....

What has helped me enormously have been the immunosupressants and immunomodulating drugs, specifically Remicade (aka Infliximab), which has made a huge positive impact on my life. Towards the end of 2009, I could barely walk due to the pain and was constantly oozing pus/blood in the groin/thigh area. A few years on and I walk several miles everyday, have very little pain and discomfort, and the amount of blood etc is minimal. The disease has by no means gone away – I am however able to cope with it a lot better than before, and to get on with life. Some people don’t get much benefit from these types of immunosuppressant drugs. For other people, they have benefited from some of the antibiotics. Different strokes and all that..

Feel free to pm me should you want to know more.

PorridgeHead · 20-11-2012 8:16pm

Hi D.
HS is a pain in the £$%& (literally), but don't let the commonly regarded fact that it is uncurable get you down. It can be managed and a decent quality of life can be had.
My daughter is 16. She is profoundly Intellectually Disabled AND she has HS. It is a £$%& hand to be dealt, can't argue with that.
We were recently introduced to Prof Brian Kirby in St. Vincents Hospital. He has a specific interest in HS. He has changed our daughters meds, and the transformation was incredible! (She can't take the normal cocktail of Riffadin and Clyndamycin as it had side effects not suited to someone in a Nappy).
He also referred us to a Prof. Des Winter (also in St. Vincents). He showed us a procedure which he has pioneered whereby he runs a thread through the trackts connecting the HS boils, which allows them to drain. It is much less invasive than the skin-graft surgery, and so far seems to have a long lasting positive result. Our Daughter's HS will flair up again, of that we have no doubt, but this seems to be a very viable limited surgical intervention which we will probably go with. He has a very convincing selection of photos of sucessful cases.
Worth checking out!!!!

Keep the chin up, and play good music.

Regards
Dave

eireanbo · 29-11-2012 1:30pm

Hi all just thought I'd pop in see how everyone's doing...still battling this hs myself never ending looks like more surgery for me tried so many meds nothing really works for me it's soo frustrating

lockman · 30-11-2012 9:26pm

PorridgeHead wrote: »

We were recently introduced to Prof Brian Kirby in St. Vincents Hospital. He has a specific interest in HS. He has changed our daughters meds, and the transformation was incredible! (She can't take the normal cocktail of Riffadin and Clyndamycin as it had side effects not suited to someone in a Nappy).
He also referred us to a Prof. Des Winter (also in St. Vincents). He showed us a procedure which he has pioneered whereby he runs a thread through the trackts connecting the HS boils, which allows them to drain. It is much less invasive than the skin-graft surgery, and so far seems to have a long lasting positive result. Our Daughter's HS will flair up again, of that we have no doubt, but this seems to be a very viable limited surgical intervention which we will probably go with. He has a very convincing selection of photos of sucessful cases.
Worth checking out!!!!

Keep the chin up, and play good music.

Regards
Dave

Hi Dave,

Finding a good doctor/consultant who has a solid understanding is paramount in coping with this. Delighted for you and your daughter that you appear to have found a good team. I know that Prof Kirby is one of the few Irish-based docs to have published on HS.

As a matter of interest, what has the medication been changed to? Is it a different antibiotic(s) or something else altogether? Long may the positive effect for your daughter continue, whatever the new meds are.

Keep us posted as to how things develop, and especially so with respect to Prof Winter's procedure, should you choose to go with it.

Regards,
Lockman

lockman · 30-11-2012 9:31pm

eireanbo wrote: »

Hi all just thought I'd pop in see how everyone's doing...still battling this hs myself never ending looks like more surgery for me tried so many meds nothing really works for me it's soo frustrating

Hi eireanbo,

Good to hear from you again. Sorry to hear about your current situation. I think that when you last posted, you were just after undergoing surgery in and around the groin region and had had a relapse of sorts. How has this panned out? Still having problems in that part of the body?

Even though the infliximab is benefiting me enormously, I am about to undergo more surgery in the groin myself in a few weeks. Last groin op wasnt successful at all.....

Keep the chin up.

Best wishes,
Lockman

ScriptGirl · 06-12-2012 1:36am

hi all,

very upsetting this condition.
I am on rifadin and dalacin C

anyone ever used them? I have had 3 major surgeries so far since my first encounter with this condition

lockman · 06-12-2012 6:44pm

ScriptGirl wrote: »

hi all,

very upsetting this condition.
I am on rifadin and dalacin C

anyone ever used them? I have had 3 major surgeries so far since my first encounter with this condition

Hi ScriptGirl,

The rifampicin/clindamycin combination has been used a lot to treat HS and is considered one of the 'front-line' treatments for HS. A recent paper claimed that ~80% of HS sufferers derived a beneficial effect from the Rif/Clin combination. It can help a lot with discharge from the lesion(s) but the scarring will probably remain.

I derived very little benefit from this drug combination, but I was quite bad and had fairly extensive HS when I tried it - I was stage III at the time (multiple interconnected lesions) and to be honest I think very little would have helped me at the time, so they decided to operate and excise the entire affected area. This surgery was a success and thankfully I have been HS-free in the affected area since.

If you want to know a little more about the therapies and treatments for HS, here is a link to the summary of a very recent scientific paper reviewing these treatments:

http://adisonline.com/dermatology/pages/articleviewer.aspx?year=2012&issue=13050&article=00001&type=abstract

From this paper:

Conclusions: The existing evidence suggests that antibacterials and anti-tumor necrosis factor therapy are effective in the treatment of HS. Further research is required to confirm the efficacy of the different medications within these groups and to explore the efficacy of other treatment modalities.

The Rif/Clindamycin combination falls under the 'antibacterials' category.

lockman · 16-01-2013 6:12pm

Hello all,

FYI, HS Ireland plans to hold its inaugural meeting on Feb 23rd in Dublin.

More details to follow soon.

lockman · 09-02-2013 6:10pm

lockman wrote: »

Hello all,

FYI, HS Ireland plans to hold its inaugural meeting on Feb 23rd in Dublin.

More details to follow soon.

The meet up is going ahead on saturday, Feb 23rd 2013, in a location in Dublin city centre.

To find out more, enquire about attending etc., follow the link in post #129 on this thread, or feel free to pm me.

Skinnysue · 10-02-2013 11:22pm

HI All,
Just wanted to update on my treatment. I was on rimapcin/dalacin combo for about 6 months before starting humira in January 2012. Since then Ive had significantly less trouble and it is over a year since I had surgery. Which is amazing as beforehand I was having at least one pretty traumatic surgery every year. cant even remember how many ive had.
THere are a few side affects that arent great, like fatigue and headaches sometimes, but id rather have them than my HS flaring up all the time.
Anyone thinking os starting humira, it is quite a hardcore treatment but its working for me and im glad i did it.

stupidskin · 13-02-2013 2:49pm

Skinnysue wrote: »

HI All,
Just wanted to update on my treatment. I was on rimapcin/dalacin combo for about 6 months before starting humira in January 2012. Since then Ive had significantly less trouble and it is over a year since I had surgery. Which is amazing as beforehand I was having at least one pretty traumatic surgery every year. cant even remember how many ive had.
THere are a few side affects that arent great, like fatigue and headaches sometimes, but id rather have them than my HS flaring up all the time.
Anyone thinking os starting humira, it is quite a hardcore treatment but its working for me and im glad i did it.

Hi. Thanks for the post, hadn't heard of this drug before today. I would consider it as I'm in the same boat now that you were before with the almost yearly op. What are the costs like ?

Cheers

lockman · 21-02-2013 5:35pm

lockman wrote: »

The meet up is going ahead on saturday, Feb 23rd 2013, in a location in Dublin city centre.

To find out more, enquire about attending etc., follow the link in post #129 on this thread, or feel free to pm me.

The meet-up planned for this saturday, feb 23, 2013, has been postponed.

I will post here again if a new date is rescheduled.

Pumpkinseeds · 23-02-2013 11:59pm

Hi everyone, I've had HS for 25 years. I've been at stage 3 for about 15 years. I tried most things over the years and have had umpteen surgeries. I was on Humira last year and I couldn't tolerate it and it wasn't helping so my Derm stopped it.

I've been taking Dapsone for the past month, to quote my Derm 'its basically the 2nd last option on a very short list'. I'm now on a waiting list for Infliximab infusions. The only successful treatment I ever got any genuine relief from was having surgery under my arm to remove most of the arm pit and then graft it.

Without doubt pain relief is something that in my experience Derms don't take an interest in. I just see my gp for that.

cch90 · 05-04-2013 2:44am

Hi everyone,

didnt realise there were so many people in ireland with this, (leprosy of today as ive heard numerous times).
Im 23 yr old female, suffering with stage 3 for 6 years now.
Literally have tried everything, from general antibiotics at the beginning, to specialised rifampicin/clindamycin combination to no avail, tried all the natural remedies poultices and the likes.
Then i moved onto Humira injections once a week, which halted the lesions, they got no better, however they didnt get worst either, for the first 6-9 months, then as usual, as it is an auto-immune disease, my body got used to humira, so my dermo, (very helpful man) moved me onto inflimab injections, not the infusion as there is no funding in hospitals for them. However the same story happened with them. body got used to it. I consulted my doctor and decided to chance travelling to australia, as everyone my age likes to travel, and couldn't last over 5 months in australia before no amount of painkillers could keep me there.

I am now back in ireland, on a 6 month URGENT (what a joke) waiting list to get back in to see a specialist, and at my wits end as lesions and breakouts are occuring both new and old, traveling down my groin onto my thigh, and from my underarms to my arms in general, i am getting new ones across my stomach aswell at a rapid pace.
I am so glad that even this thread can help my sanity, as i am loosing my mind.

lockman · 06-04-2013 2:41pm

cch90 wrote: »

Hi everyone,

didnt realise there were so many people in ireland with this, (leprosy of today as ive heard numerous times).
Im 23 yr old female, suffering with stage 3 for 6 years now.
Literally have tried everything, from general antibiotics at the beginning, to specialised rifampicin/clindamycin combination to no avail, tried all the natural remedies poultices and the likes.
Then i moved onto Humira injections once a week, which halted the lesions, they got no better, however they didnt get worst either, for the first 6-9 months, then as usual, as it is an auto-immune disease, my body got used to humira, so my dermo, (very helpful man) moved me onto inflimab injections, not the infusion as there is no funding in hospitals for them. However the same story happened with them. body got used to it. I consulted my doctor and decided to chance travelling to australia, as everyone my age likes to travel, and couldn't last over 5 months in australia before no amount of painkillers could keep me there.

I am now back in ireland, on a 6 month URGENT (what a joke) waiting list to get back in to see a specialist, and at my wits end as lesions and breakouts are occuring both new and old, traveling down my groin onto my thigh, and from my underarms to my arms in general, i am getting new ones across my stomach aswell at a rapid pace.
I am so glad that even this thread can help my sanity, as i am loosing my mind.

Hi cch90,
Glad you found us here. And I am very sorry to hear you have this condition.
Thank you for sharing your story with us.

As is obvious from this thread, there are a few of us around. Due to the very nature of it though, many are reluctant to talk about it. It is a lot more common that one might think. Most studies put the figure of those who have it in the range from 1 in 1000 to 1 in 100 of the general population, so that means that there are quite a few of us in Ireland alone. About 75% of those who have it are stage I, 24% at stage II, and 1% of us at stage III.

The group of drugs called TNF-blockers (which includes Infliximab and Humira) have been shown to work well for many whose HS doesn’t respond to antibiotics, other immunosuppressant’s (like cyclosporine) and other treatments. Unfortunately, the body will tend to reject them after a while: I think the average tolerance for Infliximab is about 9 months. There are newer versions of similar TNF-blocker drugs coming on the market: they are similar enough to Humira/Infliximab to work in the same way but different enough to trick the immune system for some time.

However, all these are very expensive treatments, with the wholesale cost to the health authorities being in the range of €15,000-€25,000 per patient per year (with Humira at approx. 15K and Infliximab at approx. 25K). That is no excuse to withdraw funding/refuse to fund anymore patients though which has been the case in Ireland recently. If we were an organised group / had the ear of some influential politicians, maybe we could put pressure on those decision makers to make this funding available. In the current economic climate, I can’t see them changing this situation for the benefit of HS sufferers.

Sorry to hear the HS cut short your travels abroad: if there is one thing I have learned, it is to try and not let the HS get in the way of living your life if at all possible. Personally, I have wasted years of my life waiting around for surgery, new treatments etc. You just got to do your best and just try and get on with life.

Thanks again for posting here and please do post again and keep us informed of how you are getting on. Who knows, maybe one of us will stumble upon something that can be of help to others with the condition. If you want to ask me or others anything, feel free to post again or pm me.
Take care,
Lockman

ScriptGirl · 15-04-2013 3:48am

lastest development with me is acne. broken out on my neck,back,face. and it's severe. according to GP this is a sister to the condition. unbelievable. never ends.

anyone else suffered with that?

@cch90 I can sympathize, the travelling thing didnt work for me either.

lockman · 19-04-2013 8:21pm

ScriptGirl wrote: »

lastest development with me is acne. broken out on my neck,back,face. and it's severe. according to GP this is a sister to the condition. unbelievable. never ends.

anyone else suffered with that?

@cch90 I can sympathize, the travelling thing didnt work for me either.

@scriptgirl,

Good to hear from you again.

Sorry to hear of this latest development. I have started getting acne around the face and shoulders recently (usually coincides with an HS outbreak). The acne outbreaks fortunately havent been too bad yet but as a 39 year old bloke, i'd rather not have to deal with it.

Take care,
Lockman.

Pumpkinseeds · 19-04-2013 8:45pm

ScriptGirl wrote: »

lastest development with me is acne. broken out on my neck,back,face. and it's severe. according to GP this is a sister to the condition. unbelievable. never ends.

anyone else suffered with that?

@cch90 I can sympathize, the travelling thing didnt work for me either.

I haven't had acne but lately my skin in areas that aren't affected by HS, has gotten very sensitive and itchy. My face and hands especially. I seem to have kind of an eczema like thing on my hands and my jaw line is very itchy. I haven't had this before. I've ordered some products from Moo Goo as they're highly recommended by a lot of people for eczema, psoriasis and dermatitis like conditions they are made from natural ingredients. It would be great to be able to use something kind to the skin.

They have a product that can be used on inflamed skin. Adhesive dressings leave my skin raw and I'd love to find something to soothe it.

lockman · 29-05-2013 7:12pm

Hello all,

Hope you are all as pain-free as possible.

I came upon this story, from a fellow HS-sufferer named Dave, and thought it worth sharing with you all. I could certainly identify and empathise with many aspects to his story.

Regards,

Pumpkinseeds · 18-06-2013 9:35pm

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

Hidradenitis Suppurativa

Comments