Hidradenitis Suppurativa

cindrella · 01-05-2014 10:53pm

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 · 02-05-2014 5:08pm

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 · 03-05-2014 1:43am

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 · 03-05-2014 12:33pm

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 · 03-05-2014 2:50pm

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 · 08-05-2014 9:26am

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 · 08-05-2014 12:52pm

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 · 08-05-2014 1:01pm

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 · 08-05-2014 4:50pm

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 · 12-05-2014 1:42pm

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.

cindrella · 15-05-2014 12:13am

Got my appointment for to see prof Kirby in vincents its in July so not to bad going to get bloods done next week gonna get the vitamin d level checked any others u would advice me to get checked while in there that could be affecting hs i counted today 16 active on right arm there getting so bad they are spreading further down even got one at side of my boob hate this disease left arm has eight active covered in scars

Pumpkinseeds · 15-05-2014 3:05pm

cindrella wrote: »

Got my appointment for to see prof Kirby in vincents its in July so not to bad going to get bloods done next week gonna get the vitamin d level checked any others u would advice me to get checked while in there that could be affecting hs i counted today 16 active on right arm there getting so bad they are spreading further down even got one at side of my boob hate this disease left arm has eight active covered in scars

Ouch, you're having a bloody rough time of it. At least you've got an appointment now and hopefully they'll be able to get a handle on it soon.

Pumpkinseeds · 15-05-2014 3:10pm

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

The GP draining them is possibly a big part of the problem. It makes them spread unless the wound is excised. I used to get it done in hospital by a general surgeon and then had to have a nurse come to the house every day and then every other day for weeks to change and pack the wound. Just remembering it makes me shudder. Even then it eventually just became one big open wound that just wouldn't heal.

cindrella · 15-05-2014 11:08pm

Pumpkinseeds wrote: »

The GP draining them is possibly a big part of the problem. It makes them spread unless the wound is excised. I used to get it done in hospital by a general surgeon and then had to have a nurse come to the house every day and then every other day for weeks to change and pack the wound. Just remembering it makes me shudder. Even then it eventually just became one big open wound that just wouldn't heal.

ones under my arm burst by themselves groin ones are much bigger in size and need help so when is active I have to stick pain for few days then if its ripe as my doctor calls it he will open it but he never packs them had a different doc who did i just want it to burst as pain is not as bad when it has

Pumpkinseeds · 16-05-2014 8:43am

cindrella wrote: »

ones under my arm burst by themselves groin ones are much bigger in size and need help so when is active I have to stick pain for few days then if its ripe as my doctor calls it he will open it but he never packs them had a different doc who did i just want it to burst as pain is not as bad when it has

The nether regions:D are the worst I know. Sometimes I'd rather gnaw my own foot off than wait for one to burst. I'm back at the hospital with my consultant this afternoon. He is one of the least helpful ones I've ever had and I bring my husband with me to see him. Now I've never been one not to stand up for myself, but this guy is like a different person when I go alone, he's just dismissive and patronising and when I bring my husband he's suddenly mr helpful:rolleyes:

You really need to be clued up when you see these guys. I was referred from Galway as it's much more convenient for me to have the Infliximab infusions done in Croom, if they ever give me an appointment. But he tried to fob me off by giving me a load of bulls*it about it being 'expensive and difficult to arrange with Croom'

He would have sent me off to just live with it. It makes me wonder how many other people with stage 3 of this disease have been fobbed off without any attempt at treatment because of cost or lack of interest.

lockman · 16-05-2014 7:17pm

Pumpkinseeds wrote: »

The nether regions:D are the worst I know. Sometimes I'd rather gnaw my own foot off than wait for one to burst.

I found the lesions/eruptions in the nether regions the most difficult to handle. The armpits were difficult enough, but the thighs/groin and backside areas can be really tough to take. I take regular baths (salts, tea-tree oil, and permitabs (prescribed by my dermatologist)) to try and take the sting out of them. Don't know if they make all that much difference, but at least you feel clean, albeit temporarily.

lockman · 16-05-2014 7:25pm

Below is a link to an abstract of the latest research paper from HS-specialist, the Danish dermatologist Prof Gregor Jemec, and his colleagues.

http://www.ncbi.nlm.nih.gov/pubmed/24804604

Full access is restricted at the moment but the abstract gives a very good summary of the paper, which is a follow-up of over 200 HS cases (diagnosed from 1981-2001).

A few points that jump out:

- Over 90% of HS patients (in this study) were smokers.
- Remission was reported in ~40% of cases (I had never seen a figure for remission before now).
- Remission was approx twice as high in non-smokers than in smokers.
- Similarly, remission was ~twice as high in non-obese than obese.

In the past few years I have noticed an increasing trend in Jemec's (and many others) papers that points a finger at factors like smoking and obesity.

Pumpkinseeds · 16-05-2014 8:54pm

I'm absolutely exhausted now. You know days where you just feel mentally and physically weary. Saw the Dermatologist today and they'll ring Croom next week to see if they can speed things up at all. As expected it's all down to budget. Apparently the anti-tnf injections are covered by a different scheme but the infusion outpatient treatment comes out of the hospitals budget, I suspected this was why Galway sent me to Limerick:rolleyes:

I spent ages wandering around the Crescent shopping centre trying to find a few tops that had sleeves, didn't manage to find any that were cotton but at least I found a few that have sleeves. My husband didn't even complain once:) He gave me another 3 month prescription of Enbrel even though it's made no difference so far. Worryingly my Liver results are 99 but they should be 33

So I'm going to have to get some more blood tests at my GP's.

Pumpkinseeds · 22-05-2014 1:24pm

I got an appointment with Rheumatology at Limerick Regional next week. I don't know if it's a consultation or if they're starting my Infliximab infusions, but it'll be good to get the ball rolling. The Enbrel is a waste of time, I've got more flare ups now than I've had for years.

Pinkyponk1 · 23-05-2014 4:02pm

Hi All,
I was so happy when I came across this thread - it's only recently that I've realised that I'm not the only person in Ireland with this horrible condition.
I'm 34 years old and have suffered with HS since I was 17, that's half my life! After reading some of the posts, I'm thankful that I only have the condition in my groin area although I've had a few breakouts under my left arm but they always cleared up.
Over the years, I've been at the STD clinic a few times, every GP I've ever attended, I've mentioned it and each time I was told it was folliculitis, no big deal and was given prescription after prescription for flufloxicillian antibiotics. I was referred to a female dermatologist in St. James Hospital in about 2005 who spent about 30 seconds with me, also said it was follicultis and to stop using perfumed soap. That was her advice.
In 2012 I was pregnant with my son. It was so bad at one stage, I showed it to the obstetrician at one of my visits and she referred me to a dermatologist (she got a bit of a shock when she seen it). I went to see him privately because the waiting list to see him publicly in this area is 2 years. €160 later, he tells me that his hands are tied as far as treating it is concerned until I have the baby and stop breastfeeding. I'm due to go back to see him next Monday and am a bag of nerves. It hasn't been treated properly in nearly a year and a half and is as ugly as sin now, extremely flared up and angry looking.
He told me in 2012 that it wasn't the worst case he'd ever seen , but I felt like saying back to him 'it's the worst case that I have seen - try living with it on a daily basis.' It's affecting my relationship with my husband and really getting me down. I'd love to bring my son swimming but I wouldn't get into a swimsuit if I was paid. I'm self conscious of the odour all the time and wouldn't dream of leaving the house without having a shower first.
I've tried every cream and wash imaginable. I was using hibi-scrub for years but it didn't seem to make any difference. I'm thinking of going on a gluten free diet to see if that helps but I really hope that the dermatologist has some good suggestions when I go to see him on Monday.

(

Pumpkinseeds · 23-05-2014 5:36pm

Hi pinkyponk1, sounds like you've been having an awful time. Hopefully you'll get some decent treatments now and get on top of it. I know that when I started having the anti-tnf treatments my Dermatologist made me sign a form saying that I wouldn't get pregnant for at least 2 years after stopping treatment, so presumably they're concerned about potential problems in that area.

I'm 41 and I've had HS since I was about 14 or so, it went undiagnosed/misdiagnosed until I was in my mid 20's. I never found antibiotics any good for the really bad stuff and I only really use them if I get cellulitis. My gp has 2 other patients with this disease so he's fairly well clued up on it these days and doesn't fob me off with things that he knows won't help.

There are a few treatments now that seem to help people with various stages of the disease and not everyone with it will get it as bad as stage 3. Once the diagnosis is made you can start to get on track and you'll get lots of good info and advice here. I used Hibiscrub for years and found it useless, if anything it just made my nether regions itchy.

I use Original Source Lemon and Teatree oil showergel everywhere these days. It's kind to skin and has a nice scent. It is very difficult to disguise the odour sometimes, regardless of how great your personal hygiene is. I find the scarring very difficult at times but I just cover it up with long sleeved light fabric sleeved tops.

lockman · 23-05-2014 7:24pm

Pumpkinseeds wrote: »

I got an appointment with Rheumatology at Limerick Regional next week. I don't know if it's a consultation or if they're starting my Infliximab infusions, but it'll be good to get the ball rolling. The Enbrel is a waste of time, I've got more flare ups now than I've had for years.

That is (potentially) good news - at least it is a step in the right direction. Fingers crossed you get sorted out with the infliximab infusions asap. Let us know how you get on.

As an aside, Trinity's Prof Luke O'Neill was on the Pat Kenny show on Newstalk this wednesday talking about anti-TNF therapy for various conditions. I think he said there are now 8 different types of anti-TNF drugs. Generally speaking, they wont work in ~40% of cases and they dont why they work in some, and not in others. It is a very active area of research at the moment.

lockman · 23-05-2014 7:36pm

Hi pinkyponk,

Glad you found us and sorry to hear you have this horrible condition. As you will see from this thread, you most certainly aren't alone. Your story (of misdiagnosis etc) is unfortunately all too common.

Pumpkinseeds has covered a lot of the points you raised. Just wanted to say that if you want to ask anything, feel free to post here or pm if you like.

Also, like Pumpkinseeds, I find the tea-tree oil helps.

Just another point - I go swimming regularly. I am heavily scarred in the armpit regions (from numerous surgeries) and most people dont appear to pay any notice, or maybe I dont notice them noticing, if you know what I mean. Many medics will advocate exercise, where tolerable, to try and help with the condition. It also helps keeping the weight down, which is increasingly thought to play a significant role in the severity of HS. I think the regular exercise helps me with my HS, akthough I couldn't say categorically so.

Good luck with the derm appointment and remember that the derm is there to try and help you.

Pinkyponk1 wrote: »

Hi All,
I was so happy when I came across this thread - it's only recently that I've realised that I'm not the only person in Ireland with this horrible condition.
I'm 34 years old and have suffered with HS since I was 17, that's half my life! After reading some of the posts, I'm thankful that I only have the condition in my groin area although I've had a few breakouts under my left arm but they always cleared up.
Over the years, I've been at the STD clinic a few times, every GP I've ever attended, I've mentioned it and each time I was told it was folliculitis, no big deal and was given prescription after prescription for flufloxicillian antibiotics. I was referred to a female dermatologist in St. James Hospital in about 2005 who spent about 30 seconds with me, also said it was follicultis and to stop using perfumed soap. That was her advice.
In 2012 I was pregnant with my son. It was so bad at one stage, I showed it to the obstetrician at one of my visits and she referred me to a dermatologist (she got a bit of a shock when she seen it). I went to see him privately because the waiting list to see him publicly in this area is 2 years. €160 later, he tells me that his hands are tied as far as treating it is concerned until I have the baby and stop breastfeeding. I'm due to go back to see him next Monday and am a bag of nerves. It hasn't been treated properly in nearly a year and a half and is as ugly as sin now, extremely flared up and angry looking.
He told me in 2012 that it wasn't the worst case he'd ever seen , but I felt like saying back to him 'it's the worst case that I have seen - try living with it on a daily basis.' It's affecting my relationship with my husband and really getting me down. I'd love to bring my son swimming but I wouldn't get into a swimsuit if I was paid. I'm self conscious of the odour all the time and wouldn't dream of leaving the house without having a shower first.
I've tried every cream and wash imaginable. I was using hibi-scrub for years but it didn't seem to make any difference. I'm thinking of going on a gluten free diet to see if that helps but I really hope that the dermatologist has some good suggestions when I go to see him on Monday. (

lockman · 24-05-2014 4:30pm

lockman wrote: »

Just another point - I go swimming regularly....

Just wish to add to this. I wont go swimming if I have active lesions/ am in a flare-up due to a) pain and b) out of consideration for other pool users. Thankfully, I dont have many active lesions of late.

Pumpkinseeds · 24-05-2014 5:29pm

I'm not sure if my appointment next week is to start Infliximab infusions or for a consult, it could be either as it's the same department as my usual consultant, but with Rheumatology this time.

I'm just wondering what to expect with the infusions. Things like how long it usually takes per session, if there are any side effects and since I'm taking the bus will I be feeling ok enough afterwards to get the bus home. I'd appreciate hearing from anyone whose had/having the Infliximab infusions. Thanks.

lockman · 24-05-2014 5:58pm

Pumpkinseeds wrote: »

I'm not sure if my appointment next week is to start Infliximab infusions or for a consult, it could be either as it's the same department as my usual consultant, but with Rheumatology this time.

I'm just wondering what to expect with the infusions. Things like how long it usually takes per session, if there are any side effects and since I'm taking the bus will I be feeling ok enough afterwards to get the bus home. I'd appreciate hearing from anyone whose had/having the Infliximab infusions. Thanks.

Pre-infusion, they will give you some paracetamol and other meds (cant recall exactly what), over a ~30 min period and ask you a lot of detailed questions (any infections recently, flu-like symptoms etc). Then, the infusion is done over a ~1 hour period. You will be sitting in a comfortable chair / on a bed throughout the process with a drip going into your arm and the infliximab is delivered to you through the drip. They will monitor you throughout the infusion (heart-rate, blood pressure, temperature) and will watch you closely for ~1 hour afterwards before letting you go home (and asking you many questions - do you feel any differently and so on). The whole process takes ~3 hours or so.

Fortunately, I have never had any side-effects with infliximab. They will explain these to you before giving the infusion to you.

Pumpkinseeds · 24-05-2014 6:48pm

lockman wrote: »

Pre-infusion, they will give you some paracetamol and other meds (cant recall exactly what), over a ~30 min period and ask you a lot of detailed questions (any infections recently, flu-like symptoms etc). Then, the infusion is done over a ~1 hour period. You will be sitting in a comfortable chair / on a bed throughout the process with a drip going into your arm and the infliximab is delivered to you through the drip. They will monitor you throughout the infusion (heart-rate, blood pressure, temperature) and will watch you closely for ~1 hour afterwards before letting you go home (and asking you many questions - do you feel any differently and so on). The whole process takes ~3 hours or so.

Fortunately, I have never had any side-effects with infliximab. They will explain these to you before giving the infusion to you.

That's good to know, thanks. I have Epilepsy so that my be a factor, not sure. On the plus side, I started HRT this week and the heavy sweating seems to have stopped, so hopefully that'll calm down the flare ups. I'm still kind of in shock about menopause at 41, seems weird, but hey ho.

tinimc · 27-05-2014 10:20am

Hi everyone,

i have started on a 6 week dose of antibiotics called Tetralvsal 300mg twice a day as well as Dalacin topical cream. I'm just wondering has anyone else being on these and what were their views. I currently have a HS in my groin area since January. I haven't had this in years as i have been on Infliximab for Colitis/Chrohns and they cleared up nearly instantly. But i did suffer terribly in my later teens early 20's. As a woman and having in your groin area its very embarressing and annoying. The pain alone would get to you. So in January it flared up again for no reason and i have had them constantly since then. I saw a dermatologist 2 weeks ago who said i was only in stage 1 (infrequent flare ups!!!!) wouldn't agree with him there but he said the option was to go on a 6 week dose on antibiotics and if after a few doses they dno't work then try a 6 month course. So today is day one of these antibiotics, i hope they work cos i'm fed up of it now. I can totally understand eveyone's pain and what they are going through. Does anyone know of any support groups or websites in Ireland relating to HS, would love to get the information if you know of any. Hope everyone has a happy and pain free day.

cindrella · 27-05-2014 6:32pm

Hi just an update i got results for vitamin d level and its 30.4 doc said its low and comments on result sheet says high risk of bone disease doctor said he doesn't know about vitamin d so no advice givin my doctor is not great hence why i am in process of changing he gives nothing for treatment etc even though today i showed him under my left arm today with 20 active he so ohh they look sore felt.like hitting him

Pumpkinseeds · 29-05-2014 2:27pm

I had my first appointment with Rheumatology today and they've prescribed Methotrexate pills to take before and during the Infliximab treatment. The info sheet they gave me says not to drink alcohol. Oh God, I really hope that isn't a permanent ban on booze:D:(

lockman · 30-05-2014 7:28pm

tinimc wrote: »

Hi everyone,

i have started on a 6 week dose of antibiotics called Tetralvsal 300mg twice a day as well as Dalacin topical cream. I'm just wondering has anyone else being on these and what were their views.

I tried that cream sometime ago and it made no notable difference to me, although I had very severe HS at the time.

I have been on very similar antibiotics and had very little impact, although I was, again, very bad at the time.

I can totally understand eveyone's pain and what they are going through. Does anyone know of any support groups or websites in Ireland relating to HS, would love to get the information if you know of any. Hope everyone has a happy and pain free day.

I mentioned the existence of a not-very-active facebook Irish HS group in some earlier posts. I am not aware of any other Irish groups. There are a few international and UK-based groups, also on facebook. Pm me if you'd like more info.

Do people think such a group would/could help those living with the condition? I'd be willing to put some effort into establishing one.

lockman · 30-05-2014 7:39pm

cindrella wrote: »

Hi just an update i got results for vitamin d level and its 30.4 doc said its low and comments on result sheet says high risk of bone disease doctor said he doesn't know about vitamin d so no advice givin my doctor is not great hence why i am in process of changing he gives nothing for treatment etc even though today i showed him under my left arm today with 20 active he so ohh they look sore felt.like hitting him

It is no surprise that your doctor wasn't aware of the possible HS-Vitamin D link: the Prof Kirby group paper was only published in April of 2014. Secondly, the Kirby group only suggested that there may be a possible link. Also, the number of people in their study (=16) is very small, and it is difficult to make general statements about the HS general population based on observations in such a small group of people. Further work on larger groups of people would be needed before any firm statements can be made.

Another thing to bear in mind in relation to the Kirby group study: Ireland has one of the highest incidents of Vitamin D deficiency in the world due to our northerly latitudes! Vit D is known as the sunshine vitamin (as sunlight promotes the production of the vitamin).

Unfortunately for us, there is as yet no evidence to suggest that taking Vit D supplements in our diet has any impact on HS.

Sounds like your arm is in a state at the moment: hope you get some kind of relief asap.

lockman · 30-05-2014 7:45pm

Pumpkinseeds wrote: »

I had my first appointment with Rheumatology today and they've prescribed Methotrexate pills to take before and during the Infliximab treatment. The info sheet they gave me says not to drink alcohol. Oh God, I really hope that isn't a permanent ban on booze:D:(

Looks like you are on course to receive infliximab. That is great - I hope they start you asap. If you even get a fraction of the relief that I've been getting you'll be doing alright. Infliximab has really made a huge and profound difference to my quality-of-life.

I am on methotrexate (MTX) aswell. My derm did say to me a few years ago that the MTX could turn out to be a great friend to me and it certainly appears to have been. It is a very potent drug, with possible nasty side-efects, and it took some getting used to. Keep a close eye on yourself while taking it and make sure to have your bloods monitored regularly.

I found the ban on booze to be a very small price to pay for the rellief from HS that infliximab and MTX has given me. Best of luck with them.

lockman · 30-05-2014 8:19pm

Below is a link to a 2007 paper by a group of French clinicians suggesting a possible link between the condition and zinc.

http://www.ncbi.nlm.nih.gov/pubmed/17460404

Their study was done on a very small group of patients (=22) so consider that before drawing any conclusions. Also, the HS patients were from stage I-II. No stage III were included in the study.

They do make some bold claims in it, such as "complete remission" in a signifiant percentage of patients. Given these claims, it is very surprising that there hasn't been any further studies done with larger groups of patients, or maybe there was but negative results were obtained (which wouldn't necessarily be reported).

Pumpkinseeds · 30-05-2014 10:17pm

lockman wrote: »

Looks like you are on course to receive infliximab. That is great - I hope they start you asap. If you even get a fraction of the relief that I've been getting you'll be doing alright. Infliximab has really made a huge and profound difference to my quality-of-life.

I am on methotrexate (MTX) aswell. My derm did say to me a few years ago that the MTX could turn out to be a great friend to me and it certainly appears to have been. It is a very potent drug, with possible nasty side-efects, and it took some getting used to. Keep a close eye on yourself while taking it and make sure to have your bloods monitored regularly.

I found the ban on booze to be a very small price to pay for the rellief from HS that infliximab and MTX has given me. Best of luck with them.

Thanks, I'm going to enjoy a few drinks over the weekend before I start the Methotrexate on Tuesday. I've got to get the bloods done every fortnight for a while, lovely as my veins are useless:D They're hoping to get me started on Infliximab in about 3 weeks. It's going to be a nightmare getting to Croom as I don't drive, but hopefully it'll be worth it, fingers crossed anyway.

Pumpkinseeds · 31-05-2014 11:06am

It's interesting to see people being prescribed topical creams, it's something I never had prescribed, although I'm reading more about them being used these days. I'm looking forward, if that's the right way of wording it, to starting the Infliximab infusions, sitting down is starting to be a problem.

I had a good chat with the nurse and rheumatology take an entirely different view of HS than I've ever come across. In their opinion it's caused by a problem with the immune system as opposed to infection. I've had lots of joint aches and pains over the years and never thought much about it but apparently that can be the HS as well.

lockman · 01-06-2014 12:37pm

Pumpkinseeds wrote: »

I had a good chat with the nurse and rheumatology take an entirely different view of HS than I've ever come across. In their opinion it's caused by a problem with the immune system as opposed to infection. I've had lots of joint aches and pains over the years and never thought much about it but apparently that can be the HS as well.

There is an increasing number of authors in the medical literature beginning to think along the same lines about HS, and specifically that it is an autoimmune condition.

Pumpkinseeds · 01-06-2014 1:05pm

lockman wrote: »

There is an increasing number of authors in the medical literature beginning to think along the same lines about HS, and specifically that it is an autoimmune condition.

How have you found taking methotrexate, if you don't mind me asking? I've read some nightmare stuff about it, but I suppose you could say the same about a lot of meds. I'm going to start it on Tuesday so I'll soon find out. I'll be on 10mg for a month, increasing to 15mg a week after that.

lockman · 01-06-2014 1:48pm

Pumpkinseeds wrote: »

How have you found taking methotrexate, if you don't mind me asking? I've read some nightmare stuff about it, but I suppose you could say the same about a lot of meds. I'm going to start it on Tuesday so I'll soon find out. I'll be on 10mg for a month, increasing to 15mg a week after that.

I am currenlty on 10mg per week of methotrexate(mtx) and have been taking it for 4+ years now. It took some getting used to, to be honest. When I first started taking it, I had the following reactions:
i) a general malaise and tiredness,
ii) diarrhea,
iii) sensitivity to sunlight

I take mtx with my last meal of the day and go to bed shortly afterwards. That helps with i). With ii), I still have that occasionally and from time to time find myself rushing to the toilet first thing the following morning. Taking the mtx with food generally helps with ii). The sensitivity to sunlight is a common enough side effect. I'd find my eyes streaming with tears on particularly bright and sunny days. With time, that has disappeared. Finally, my hair has thinned a bit on top, but age is probably playing a role there also.

All of the above I found have become less of an issue with time as the body is getting used to it.

Pumpkinseeds · 04-06-2014 6:07pm

I was going to start taking the Methotrexate tonight, but I forgot to stop taking the folic acid this morning. I've been taking folic acid for a long time and I put all my meds into a 7 day pill organiser so I just took it at 5am without thinking.

I'm having my first Infliximab infusion next Tuesday so fingers crossed. I plan on taking the MTX on Wednesdays as the infusions are always Tuesdays or Fridays and that gives me a couple of days to recover if I need it.

cindrella · 04-06-2014 6:17pm

Just spent two hours waiting to see my own doctor who i had a appointment for have large abscess in groin area can hardly walk he was so rude telling me.he hasn't time to be draining them every month etc.i was so upset he asked.me did i want.him to drain it i said it should really be drained and packed as otherwise it just.comes back he said he hadn't time to do all that.

so if i wanted.he would just.pierce it with needle and let it drain itself i said no i rather it be done properly or not at all he was so rude i had just sat for two of my time to be meet with a rude ignorant person who is suppose to be professional.

i said to him that he had not tried any treatments to help stop i gave him name of some antibiotics and creams that are meant to help he said i could have them if i wanted so came out of surgery upset and still in pain from abscess

Pumpkinseeds · 04-06-2014 8:13pm

cindrella wrote: »

Just spent two hours waiting to see my own doctor who i had a appointment for have large abscess in groin area can hardly walk he was so rude telling me.he hasn't time to be draining them every month etc.i was so upset he asked.me did i want.him to drain it i said it should really be drained and packed as otherwise it just.comes back he said he hadn't time to do all that.

so if i wanted.he would just.pierce it with needle and let it drain itself i said no i rather it be done properly or not at all he was so rude i had just sat for two of my time to be meet with a rude ignorant person who is suppose to be professional.

i said to him that he had not tried any treatments to help stop i gave him name of some antibiotics and creams that are meant to help he said i could have them if i wanted so came out of surgery upset and still in pain from abscess

That's awful and unacceptable. Is a GP draining and packing them standard in Ireland? I only ask as I used to have to have a lot of incision and drainages in the Uk. My GP always sent me to A&E for it. The standard routine was they'd admit me, I'd have a full anaesthetic, they'd drain and pack it in theatre. I'd be in hospital for a couple of days and the dressing change was done in the hospital.

When I was discharged a nurse would come to the house to do the dressing changes and packing. The packing needs changing regularly as the wound needs to be kept open to heal from the bottom up. If your GP is only draining it and packing it once then he is just making it worse and the cycle will just continue. He sounds like a total arsehole. Poor you, they are so so painful:( I'm angry for you:mad:

lockman · 04-06-2014 8:42pm

Pumpkinseeds wrote: »

I was going to start taking the Methotrexate tonight, but I forgot to stop taking the folic acid this morning. I've been taking folic acid for a long time and I put all my meds into a 7 day pill organiser so I just took it at 5am without thinking.

I'm having my first Infliximab infusion next Tuesday so fingers crossed. I plan on taking the MTX on Wednesdays as the infusions are always Tuesdays or Fridays and that gives me a couple of days to recover if I need it.

According to my GP, different medics will have different protocols for taking folic acid with the mtx. I used to take the folic acid everyday except the day I was due to take the mtx. About a year ago, my derm suggested I take the folic acid every day of the week.

lockman · 04-06-2014 8:48pm

cindrella wrote: »

Just spent two hours waiting to see my own doctor who i had a appointment for have large abscess in groin area can hardly walk he was so rude telling me.he hasn't time to be draining them every month etc.i was so upset he asked.me did i want.him to drain it i said it should really be drained and packed as otherwise it just.comes back he said he hadn't time to do all that.

so if i wanted.he would just.pierce it with needle and let it drain itself i said no i rather it be done properly or not at all he was so rude i had just sat for two of my time to be meet with a rude ignorant person who is suppose to be professional.

i said to him that he had not tried any treatments to help stop i gave him name of some antibiotics and creams that are meant to help he said i could have them if i wanted so came out of surgery upset and still in pain from abscess

You really are having a tough time at the moment.

I found very hot salt baths used to help abscesses in the groin region to come to a head and start draining.

You are due to see Prof Kirby soon aren't you? Hopefully he and his team will put in place a regime for you that will start giving results.

cindrella · 04-06-2014 9:30pm

lockman wrote: »

You really are having a tough time at the moment.

I found very hot salt baths used to help abscesses in the groin region to come to a head and start draining.

You are due to see Prof Kirby soon aren't you? Hopefully he and his team will put in place a regime for you that will start giving results.

yes in July thank god cant come quick enough my doctor doesn't pack them he sticks a needle in which u all know hurts like hell and that's it no dressing etc no pain relief . I asked him today to open it let it drain and pack it and he said he hadn't time he would put a needle in to puncture it.
was in tears leaving and still upset i know.i wont get a proper nights with pain spent last hour in bath hopefully it will burst. Going to change doctors tomorrow if i can he knows nothing about hs anything he knows i told him

Pumpkinseeds · 04-06-2014 10:22pm

cindrella wrote: »

yes in July thank god cant come quick enough my doctor doesn't pack them he sticks a needle in which u all know hurts like hell and that's it no dressing etc no pain relief . I asked him today to open it let it drain and pack it and he said he hadn't time he would put a needle in to puncture it.
was in tears leaving and still upset i know.i wont get a proper nights with pain spent last hour in bath hopefully it will burst. Going to change doctors tomorrow if i can he knows nothing about hs anything he knows i told him

That's just awful. The pain is bad enough without being made to feel like some kind of burden who should be grateful for having a needle stabbed in your groin. At least you're getting to see the consultant next month. Hopefully that'll be an end to that kind of half assed gobsh*tery from your GP.

cindrella · 05-06-2014 9:08pm

Changed doctors after a night of hell new doctor could not believe old one had left me in such state and its now full of infection so much so she would not lance it she used a needle and drew some out to relieve pressure and gave me antibiotics.
she drew around it as its as big as my hand and said if it spread to go to hospital.she said she wouldn't leave a dog in the state he has left me over a week.
have so relief since thank god and hope it will just get better going back to see her next week so she can do full assessment of situation didn't show her under arms yet as i just wanted groin sorted.

Pumpkinseeds · 06-06-2014 11:03am

cindrella wrote: »

Changed doctors after a night of hell new doctor could not believe old one had left me in such state and its now full of infection so much so she would not lance it she used a needle and drew some out to relieve pressure and gave me antibiotics.
she drew around it as its as big as my hand and said if it spread to go to hospital.she said she wouldn't leave a dog in the state he has left me over a week.
have so relief since thank god and hope it will just get better going back to see her next week so she can do full assessment of situation didn't show her under arms yet as i just wanted groin sorted.

Sounds like you have a Cellulitis infection, very nasty indeed. I get the occassional bout and usually draw a circle around it so I know if it's getting better or worse. It's an awful infection and makes you feel awful. I'm glad you won't be going to the old doctor any more, he seemed to be doing more harm than good. Hope you feel better soon and don't take any chances with that infection, it can be fatal if untreated.

cindrella · 06-06-2014 2:54pm

Yep back today its doubled more antibiotics its cellulitis infection as well yeah feel awful she cut it open but.nothing came out she drew around it again if spreads anymore its off to hospital for iv antibiotics hopefully with all the antibiotics it will clear up

Pumpkinseeds · 06-06-2014 4:03pm

cindrella wrote: »

Yep back today its doubled more antibiotics its cellulitis infection as well yeah feel awful she cut it open but.nothing came out she drew around it again if spreads anymore its off to hospital for iv antibiotics hopefully with all the antibiotics it will clear up

With cellulitis it generally means the infection has spread into the tissue. At least if you ended up in the hospital they might actually do something for you. Take care of yourself.

Hidradenitis Suppurativa

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