Hidradenitis Suppurativa

Pumpkinseeds

lockman wrote: »

Yes, I too have a problem with excessive sweating. I've had the sweat glands removed from both armpits, and ever since, my body seems to be trying to compensate elsewhere, especially in the small of the back.

The humid weather really promotes sweating for me also, and after a brief, brisk walk in warm weather, I too look like I've just come out of the shower.

Anyway, the removal of the glands seems to have kept the HS at bay in the armpit region at least for me.

Me too, fingers crossed. Still, given the choice between being in soul destroying pain or being sweaty I'll take sweaty:)

Whippersnapper

I've just been diagnosed with HS. I'm 30 years old and I've been told it's quite unusual to develop the illness as an adult. Can I ask what age you were when you first noticed the condition and what age you were when you got diagnosed?

I've started a blog to talk about my experiences with it. It helps get everything down on paper so to speak. If any of you want to drop by and have a look that would be great. The link is in my sig.

lockman

Whippersnapper wrote: »

I've just been diagnosed with HS. I'm 30 years old and I've been told it's quite unusual to develop the illness as an adult. Can I ask what age you were when you first noticed the condition and what age you were when you got diagnosed?

Hi Whippersnapper,

I am very sorry to hear about your diagnosis with HS. I appreciate that there is a lot to take in about it, but should you have any questions or anything like that, please post them here or pm me.

I was ~12/13 yo when the condition first arrived and I was misdiagnosed (with pilonidal sinus) for ~ 20 years.

I was finally diagnosed with HS when I was ~32 yo. I am now 40.

It is not that uncommon for people to go misdiagnosed or even undiagnosed for long periods.

HS is most commonly diagnosed in the second or third decades of life. In a 2006 age of onset study by Jemec and co-workers*, just under 50% of people were in the 20-30 year old age group when it started, approx 40% were under 20 yo, about 10% were in the 31-40 age group, and a very small percentage were 41+. The mean age of onset was 23 yo. Other studies have shown similar trends.

* Poli, F., Jemec, G.B.E, and Revuz, J. 2006. Clinical Presentation. In Hidradenitis Suppurativa, Jemec, GBE, Revuz J, and Leyden JJ (Editors), pp.11-24.

Pumpkinseeds

Whippersnapper wrote: »

I've just been diagnosed with HS. I'm 30 years old and I've been told it's quite unusual to develop the illness as an adult. Can I ask what age you were when you first noticed the condition and what age you were when you got diagnosed?

I've started a blog to talk about my experiences with it. It helps get everything down on paper so to speak. If any of you want to drop by and have a look that would be great. The link is in my sig.

Hi, I had my first flare up when I was about 13 or 14 and like most people it was undiagnosed/misdiagnosed until I was in my 20's, I'm 41 now. The thing about this disease is that so little is known about it. One expert will say that it can't occur before puberty for example, then you will read about a case of it in a young child.

The same can be said of areas of the body that some experts will say can't be affected and then you will read about cases where those areas are affected. With such relatively little research being done I don't really believe that there are any 'experts' on it.

Whippersnapper

Thanks for the replies. I think I may have had some symptoms as a teenager but passed them off as ingrown hairs or something like that.

Would any of you in this thread be interested in guest posting on my blog? I'd like to get many different accounts of the illness from as many HS sufferers as I can. PM me or comment on my blog if you'd like to get involved.

Pumpkinseeds

With the weather getting a bit more humid I've been having more flare up's. I was planning on getting measured for a new bra tomorrow but one of the old sinus tracts under my arm has gotten active this week, so that's not going to happen.

It just got me thinking about the other minor but annoying problems with this disease, like buying comfortable underwear that doesn't press on sore areas or getting Summer clothes that have a bit of a sleeve on them. Women will know what I mean about sleeves. For some reason over the last few years it's gotten really hard to find tops that don't have cut off sleeves or virtually non existant sleeves.

I have massive scarring under 1 armpit and it looks a bit like a shark bite, but I've never for a second regretted having that surgery done. The other armpit is active and has a lot of old scarring from minor ops etc, so I like to keep them hidden.

I was just wondering if anyone else would like to share their trivial minor annoyances about HS, or just generally have a rant:D

cindrella

Hi i have been reading this thread for quite a while my gp has just sent a referal letter to vincents for me to be seen by a consultant after 17 years of putting up with it in 32 last 4 years have been the worst but last year has really got to me not a month goes by when i haven't had an abcess either under my armpit or groin that my gp needs to drain have about five active at present just had one drained today loads of scarring from old ones have tried antibiotics etc but nothing works i do believe I have hs unfortunately i just hope in not waiting to long for appointment to see consultant any suggestions advice would be great im on beymicine antibiotics last four months

laylaw

Pumpkinseeds wrote: »

It just got me thinking about the other minor but annoying problems with this disease, like buying comfortable underwear that doesn't press on sore areas or getting Summer clothes that have a bit of a sleeve on them. Women will know what I mean about sleeves. For some reason over the last few years it's gotten really hard to find tops that don't have cut off sleeves or virtually non existant sleeves.

This is one of my major annoyances as well. I find even if I wear something without a sleeve and wear a cardi over it, i'm still so conscious about someone catching a glance. I'm basically resigning myself to a t-shirt and jeans this summer.

cindrella wrote: »

Hi i have been reading this thread for quite a while my gp has just sent a referal letter to vincents for me to be seen by a consultant after 17 years of putting up with it in 32 last 4 years have been the worst but last year has really got to me not a month goes by when i haven't had an abcess either under my armpit or groin that my gp needs to drain have about five active at present just had one drained today loads of scarring from old ones have tried antibiotics etc but nothing works i do believe I have hs unfortunately i just hope in not waiting to long for appointment to see consultant any suggestions advice would be great im on beymicine antibiotics last four months

Heya cinderella, antibiotics have never worked for me. They'll usually only do something if you have an infection. I too have been referred to Vincents, I am going to be seeing Brian Kirby soon, if you read back someone else posted reports by him, he has an interest in HS and knows a lot about it.

He recently published a report about the link between HS and Vit. D, I didn't get to read the full report but I decided to get a Vit. D blood test done two weeks ago, and low and behold I am deficient. You vit.d levels should be around 15, mine is currently at 10.2. I've been told to take supplements for a month and get another blood test done then. I will keep you updated on whether or not this will have an effect on the HS, I am hoping it will clear it up nicely, but not hoping too much in case it doesn't.

You should have a read back at some of the medical journals that have been posted here, there are very interesting and for me, just knowing there is someone out there trying to get to the bottom of HS is a big comfort. There's hope for us all

You can pm me if you like or if you have any questions that you think I might be able to answer. I have HS mainly in both armpits, and like you I usually have about 5 or 6 at the same time. It's a nightmare.

cindrella

laylaw wrote: »

This is one of my major annoyances as well. I find even if I wear something without a sleeve and wear a cardi over it, i'm still so conscious about someone catching a glance. I'm basically resigning myself to a t-shirt and jeans this summer.



Heya cinderella, antibiotics have never worked for me. They'll usually only do something if you have an infection. I too have been referred to Vincents, I am going to be seeing Brian Kirby soon, if you read back someone else posted reports by him, he has an interest in HS and knows a lot about it.

He recently published a report about the link between HS and Vit. D, I didn't get to read the full report but I decided to get a Vit. D blood test done two weeks ago, and low and behold I am deficient. You vit.d levels should be around 15, mine is currently at 10.2. I've been told to take supplements for a month and get another blood test done then. I will keep you updated on whether or not this will have an effect on the HS, I am hoping it will clear it up nicely, but not hoping too much in case it doesn't.

You should have a read back at some of the medical journals that have been posted here, there are very interesting and for me, just knowing there is someone out there trying to get to the bottom of HS is a big comfort. There's hope for us all

You can pm me if you like or if you have any questions that you think I might be able to answer. I have HS mainly in both armpits, and like you I usually have about 5 or 6 at the same time. It's a nightmare.

hi thanks for the reply
the vitamin. D level us very interesting i think last time i had mine checked it was low and also my folate not sure if that means anything doctor never said anything but nurse commented that it was extremely low
hs is ok this week had a few drained and am having some relief have a few starting must get bloods re checked hopefully wont be waiting to ling to see me Kirby meet him loads of times as my mam was a patient of his really nice.doctor a gentleman and they are rare hope things are good with u always good to know we are not suffering alone

Pumpkinseeds

cindrella wrote: »

Hi i have been reading this thread for quite a while my gp has just sent a referal letter to vincents for me to be seen by a consultant after 17 years of putting up with it in 32 last 4 years have been the worst but last year has really got to me not a month goes by when i haven't had an abcess either under my armpit or groin that my gp needs to drain have about five active at present just had one drained today loads of scarring from old ones have tried antibiotics etc but nothing works i do believe I have hs unfortunately i just hope in not waiting to long for appointment to see consultant any suggestions advice would be great im on beymicine antibiotics last four months

You're having a rough old time of it. I never found antibiotics helpful with HS, except for treating cellulitis. I didn't know some doctors do drainage here. My GP in England used to send me to the hospital to have it done. It was handier in some ways, but having it packed daily for weeks by a nurse was very painful.

The waiting lists are ridiculous. My GP and Consultant have always recommended phoning the Secretary of whatever Consultant you're waiting to see, if you've been waiting a good while. Just to ask where you are on the list. There've been a few times when my GP has written to Consultants to push for me to be seen faster.

I'm waiting for anti-tnf infusions. My Consultant has written to them twice since December and I've left 2 messages and still nothing. I don't blame the departments, I blame the 2 tier system that allows private patients to be seen in weeks and public patients to wait years to see any consultant for anything.

Clothes wise, last year I stocked up on very light loose cotton blouses that kept me cool in the humidity and also let a bit of air circulate at the sore bits. Dunnes do cheapish linen trousers and the knee length cargo shorts and combats are a bit more comfortable than jeans. They aren't really my thing but wearing them is better than looking like a beetroot and hovering near the fridges in the frozen section of the supermarket:D

Pumpkinseeds

I had an abcess in my right armpit over the past week. It's been years since I had an active one there, usually there's just itchy scarring and old sinus tracts. It's draining now, thankfully. One thing that's always annoyed me is when HS is described as 'boils'.

To me a boil is something that forms a head and bursts, like a large pimple. For me HS abcesses are a large mass that pushes slowly upwards eventually tearing through the skin, not a boil.

laylaw

Pumpkinseeds wrote: »

I had an abcess in my right armpit over the past week. It's been years since I had an active one there, usually there's just itchy scarring and old sinus tracts. It's draining now, thankfully. One thing that's always annoyed me is when HS is described as 'boils'.

To me a boil is something that forms a head and bursts, like a large pimple. For me HS abcesses are a large mass that pushes slowly upwards eventually tearing through the skin, not a boil.

I agree. "boils" always makes it sounds even more disgusting in my mind. Makes me feel like I should be coloured green and wear a pointy hat. Hope your arm clears up soon. I have it in both of my arms but they have been behaving themselves somewhat lately. Still draining but no pain. (I've probably jinxed myself now though!)

Pumpkinseeds

I'll be fine:) I've only got 1 Enbrel injection left and there's a week between that and my next consultation. I'm not going to refill it until I've spoken to the Dermatologist. I've been on the stuff for 8 months now and there isn't the slightest sign of improvement so I don't really think there's much point in taking it.

I was sceptical of it to begin with, it would have been nice if it had worked but there's always the Infliximab infusions, if I ever get an appointment date.

Pumpkinseeds

Well now that the abcess is draining another previously inactive sinus tract is inflammed, not sure what that's about. One thing I've noticed with mine over the years is that I tend to get flare ups in an area, say the groin for example and then that'll settle down while it targets another area like the arm pit. Anyone else experience that?

Also there are times when it affects areas on the same side of the body so the right armpit and right groin would be active while the left would be fairly inactive. I had some blood tests 3 months ago and my oestrogen levels were very low. I've been off the pill since then to have more bloods taken this week to get a more accurate oestrogen level. Maybe that's it. I'm only 41 so it came as a bit of a shock to think menopause might be closer than I thought.

laylaw

I experience the same thing. I will have both arms clear for a day and then it'll flare up on my groin. It's mostly in my arms though and having both clear at the same time is a magical moment. I've also noticed it attack either the left or the right. If my left arm is clear and I have a flare up on my right arm, I'll get a small flare up on the right of my groin. It's interesting, I'd love to know why it does that, there has to be a reason.

Best of luck with your blood tests, hopefully it was just the pill causing your levels to be low.

I got my letter through the door today for an appointment with Prof. Brian Kirby, it will be on the 22nd of May. I'm looking forward to it, and quite surprised at how quick it came through considering I'm on a medical card.

My doc also has me taking 1600UI of vit. d per day, as the normal levels are 50ug and my levels are only at 10.2. Scary when you think about it, lord knows what else I would have wrong with me if I ignored them.

Pumpkinseeds

That's brilliant that you got such a quick appointment date. Hopefully all will go well for you:)

cindrella

Hi guys just wondering what deodorant etc u use is there any that doesn't irritate i use aveno shower gel as its recommended by a dermatologist before for eczema doctor advised me to use hibi scrub for under arms and groin find it very harsh on skin

Pumpkinseeds

cindrella wrote: »

Hi guys just wondering what deodorant etc u use is there any that doesn't irritate i use aveno shower gel as its recommended by a dermatologist before for eczema doctor advised me to use hibi scrub for under arms and groin find it very harsh on skin

I was advised to use Hibiscrub and I did for years, but like you I found it very harsh and so I stopped using it. I think Lockman posted an article here about Hibiscrub having been found not to make any difference to HS.

I use Original Source Lemon shower gel. I don't use any deodorant under my arms as the left armpit has been grafted and doesn't sweat but the right one would be aggravated if I sprayed deodorant on it. I just use the deodorant on skin that isn't affected by the HS.

There is a range called MOO GOO that you can get in many pharmacies and online. It's free of nasties, not tested on animals and there's one specifically tailored as a steroid free alternative for excema and that sort of thing. It might be worth trying, I used it for dermatitis on my hands and it was really good, have forgotten the name of it.

laylaw

cindrella wrote: »

Hi guys just wondering what deodorant etc u use is there any that doesn't irritate i use aveno shower gel as its recommended by a dermatologist before for eczema doctor advised me to use hibi scrub for under arms and groin find it very harsh on skin

I use Urtekram Organic Rose Crystal Deodorant. Got it in the health food store. I have sensitive skin in general so I find this and the dead sea spa magic bath products work best for me.

Pumpkinseeds

The latest abcess burst in the shower a while ago, thankfully. I'm amazed at how I'd forgotten just how bad the pain is in the armpit. It's mostly affected my nether regions for years. This one came up a day or so after the last one went, hopefully a 3rd one won't come up now. I had the blood tests for Dermatology and Oestrogen levels done this morning so I started back on the Pill to see if it settles things down a bit.

I was chatting with my GP this morning and getting him up to speed on things, he was shocked at how ridiculous the system is, and he has 2 other patients with less severe HS.

My situation is this: Attended Dermatology in Galway for a year and nothing worked so the Dermatologists have a special think tank every now and again and Derms from the area see difficult Derm cases and discuss their ideas. The general consensus was for me to try an anti-tnf injection weekly, that didn't work.

So they decided that Infliximab infusions would be the best option and referred me to Limerick as it's much closer for me than a 4 hour round trip on the bus. Limerick were adamant that I try Enbrel weekly injections which I've been on for 8 months and haven't helped.

In December Dermatology in Limerick tried to fob me off with a 'there's nothing more we can do' response. I wasn't leaving the consulting room without a referral to Croom, which I got. The consultant wrote to Croom in December and February. He advised me to phone Croom and explain just how severe my HS is and hope they'd see me as soon as possible.

I phoned the Rheumatology Secretary in Croom who told me that I needed to phone the Rheumatology Nurse as it's her who deals with appointments. Rheumatology nurse doesn't answer the landline so I rang the mobile number for her. The mobile hasn't been answered and has a voicemail saying if you want an appointment you have to phone the relevant secretary:mad:

I left a message last week,not mentioning an appointment, on the nurses mobile and she hasn't returned my call. So I'm just going to have to persevere and call again tomorrow and every day thereafter if necessary.

cindrella

System is a joke pumpkin seeds in sorry u are suffering i know the relieve that you get when one bursts or is drained.

i get loads under my arms but the groin ones are much more painful for me i recently started doing aqua aerobics and the gym to lose weight to try see if this helps purchased a swim dress to try hide some scars but can't hide ones under my arms people stare which can be embarrassing.

i find i am getting more at moment than i ever did dnt know if its cause in working out and sweating but i shower straight away after.
was hoping the chlorine would help and the steam room but no such look gonna ask doctor for to do bloods check vitamin level u were talking about.i have implanon in my arm don't know.if this makes problem worse.

Pumpkinseeds

It's not too bad today. I've been taking Tramadol for a couple of days and I'm leaving the dressings off when I'm at home. I just put a clean soft face cloth under my arm and let them drain until bedtime and then put dressings over them.

cindrella

Be careful with tramadol my mam was taking it for leg ulcers gave her dementia like symptoms was horrible she was on it for about a year small doses worse year ever doctors taught she had dementia brought her to specialists and all.
aunt told us one day to take her off it 2 weeks later she was back to normal had become toxic in her system scary is the word id use .

Pumpkinseeds

cindrella wrote: »

Be careful with tramadol my mam was taking it for leg ulcers gave her dementia like symptoms was horrible she was on it for about a year small doses worse year ever doctors taught she had dementia brought her to specialists and all.
aunt told us one day to take her off it 2 weeks later she was back to normal had become toxic in her system scary is the word id use .

Yeah, it's awful stuff and I very rarely use it. I'm allergic to Ponstan and I have Epilepsy so I have to be careful with mixing painkillers and anti-convulsants. I get soluable solpadeine on prescription but this time it was just like taking smarties as far as pain control went. I should be OK to stop them tomorrow.

The area was really really itchy last night, ya know when you desperately want to scratch it but you'd be heard screaming on the other side of the town if you did scratch:D I sprayed some wound cleaner on it that I'd got in the first aid box and it was great. It took the itch out of the skin and made it bleed a lot so it drained it a lot faster, it was very painful though.

My husband just drew a line around the inflammed area in case there's cellulitis in it. It can be hard to know sometimes if it's cellulitis or just inflammation. I find drawing a line around it is a great way to tell if it's getting better or worse.

laylaw

Just a quick update. I'm not saying this will work for everyone, as you know we're all different.

It's day 6 today of taking the Vit.D supplements, and I have to say my arms have never looked better. I'm down to one small one on each arm and clear everywhere else. My energy levels are way more than what they used to be also.

I'm hoping it's not coincidence, but only time will tell I suppose.

stupidskin

Hi

Haven't been on here with a while as flareups haven't been sooo bad post 40 . Don't get me wrong there still are flare ups just not as bad. But what I am worried about is the forth coming water charges. We all appreciate multiple baths are essential with flare ups and post surgery.

I see this note on the outlines for implementation

o Charges to be capped for people with high water usage due to certain medical conditions (these conditions to be determined in consultation with the Minister for Health); and


Is there anything we can do to ensure we get recognition of this condition for this purpose ?

Pumpkinseeds

stupidskin wrote: »

Hi

Haven't been on here with a while as flareups haven't been sooo bad post 40 . Don't get me wrong there still are flare ups just not as bad. But what I am worried about is the forth coming water charges. We all appreciate multiple baths are essential with flare ups and post surgery.

I see this note on the outlines for implementation

o Charges to be capped for people with high water usage due to certain medical conditions (these conditions to be determined in consultation with the Minister for Health); and


Is there anything we can do to ensure we get recognition of this condition for this purpose ?

I'd say your best option would be to ask both your Consultant and GP to write letters for you explaining you're medical condition and stating that you need it for medical reasons. I don't know if it HS is classed as a disability in Ireland, frankly if it isn't then it should be, but it is in the UK.

Also everyone with HS should check to see if they are entitled to a medical card. I have Epilepsy so I have mine and I don't know what I'd do without it.

stupidskin

I got a medical card before but as we had high childcare costs etc at the time I wasn't sure if they were giving it on the medical grounds or on the monetary grounds, anyway when it came to renewal this time it just wasn't worth the effort.

Also issuing one to every member of the family is crazy I don't understand the logic.

TBH I would have been happy with GP card, maybe I will retry in the future

Pumpkinseeds

I don't know why mine is suddenly so active. I've 2 draining and healing under my right armpit and now it's gone into overdrive on my right bum cheek. Frustrating bloody disease. I'm back with the consultant next week, not that I expect much more than a brief catch up.

I've no problem speaking up for myself, you learn to with this disease, but I always bring my husband with me to this consultant as he is like a different person when I'm alone. I went twice on my own and he tried to fob me off and was very dismissive, but when I take my husband he's professional and amiable, whatever the Hell that's about

Pumpkinseeds

I got the results of my hormone level blood tests this morning and I'm menopausal, feels weird as I'm only 41. It kind of makes a lot of sense, I'd put a lot of the symptoms down to the HS. I'm back with my Dermatologist this week and my GP has advised me to check with him about HRT and any possible problems with the anti-tnf's, otherwise I'm starting HRT soon.

I'm just curious to know if there are any women on the forum who are menopausal/have been through menopause and if so whether or not it had any effect on the HS. If nothing else I'm hoping the HRT will stop the constant sweating and hot flushes.