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Hidradenitis Suppurativa

lockman

Hi All,

Was diagnosed with hidradenitis suppurativa (HS) about 3 years ago. Have had 2 operations so far (armpits) and am currently awaiting a third op (groin region).

Just wondering if there are many other HS sufferers out there, how long you have had it, therapies tried, surgeries etc, alternative treatments, and the like.

Regards,

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teacherspet

Any one else here using Vicks Vapour Rub ? I use it and get great relief from it.

Pumpkinseeds

Whippersnapper wrote: »

Would anybody here be interested in a meet-up either socially or as a kind of support group? I can't seem to find one in Ireland.

I prefer my anonymity, not because of embarassment about HS, I'm fine with it. I'm happy to chat about any aspect of the disease on forum or by pm.

Pinkyponk1

Teacherspet, do you use vicks on the breakouts? Does it really make a difference?

My HS is in a terrible state at the minute, I got a prescription from the dermatologist for rifampicin and clindamycin and clindamycin lotion but I had an awful reaction to the tablets with vomiting & other stuff. I stopped the tablets but am planning to give them another go. The prescription is for 4 months and they cost €120 so I feel I need to try them again but I keep putting it off. The few days I did take them I noticed a bit of a difference.

Can I ask, how did everyone else get on with them? Dr. Google said that I can develop collitis as a result of taking the tablets so I'm wary of what they might do to my system. The consultant said if the tabs didn't work or agree the next step would be injections (whatever that means). He diagnosed my HS as being stage 2. It's such a rotten ailment to have. :-(

Pumpkinseeds

Pinkyponk1 wrote: »

Teacherspet, do you use vicks on the breakouts? Does it really make a difference?

My HS is in a terrible state at the minute, I got a prescription from the dermatologist for rifampicin and clindamycin and clindamycin lotion but I had an awful reaction to the tablets with vomiting & other stuff. I stopped the tablets but am planning to give them another go. The prescription is for 4 months and they cost €120 so I feel I need to try them again but I keep putting it off. The few days I did take them I noticed a bit of a difference.

Can I ask, how did everyone else get on with them? Dr. Google said that I can develop collitis as a result of taking the tablets so I'm wary of what they might do to my system. The consultant said if the tabs didn't work or agree the next step would be injections (whatever that means). He diagnosed my HS as being stage 2. It's such a rotten ailment to have. :-(

I had the same combination last year and it didn't help me at all. Luckily I just had an upset tummy but nothing severe. The injections might be anti-tnf's like Humira or Enbrel. They seem to be getting more common in HS recently. I had both and they didn't work for me but I have very severe stage 3 and I think it was just time killing to keep the hospital budget down.

The anti-tnf's are very expensive but their is a government scheme for that. With the infusions of the anti-tnf's the cost comes out of the hospital budget. How long were you taking the tablets? It might be worth having a chat with the Dermatologist. If they're having such a severe reaction that they're coming out one end or the other then they won't be doing anything to help you anyway. Since you pay for your prescriptions you could ask the pharmacy if they will take the pills back and refund you for them. Nothing ventured nothing gained.

teacherspet

I have been on tablets for over a year, recently came off every thing. Each morning I milk my arms pits then wash. I then use Pit Rock crystal deodorant. That has helped a lot too. If I have a boil that I cannot milk because it's not ready yet I then rub some vicks on and it stops the pain from driving me mad. It tingles for about 2 minutes and in about half an hour the pain is about 75% less. It does not sting. Used it down below too.

Pinkyponk1

That's true, I might do that. I only took them for 3 days and even when I stopped I still had an upset tummy. In saying that I continued to use the lotion (on advice from the GP).

A few people had a stomach bug at work and it's in my mind that maybe that's what I had but I'm not sure. Thanks a mil for your reply.

lockman

Hi all,

A new website, designed by HS specialists and sufferers has just been launched. It aims to give support and guidelines to patients that may in turn help medical professionals with appropriate referrals or diagnosing HS.

www.hsonline.ca

lockman

Pinkyponk1 wrote: »

....I got a prescription from the dermatologist for rifampicin and clindamycin and clindamycin lotion but I had an awful reaction to the tablets with vomiting & other stuff.....The few days I did take them I noticed a bit of a difference.

Can I ask, how did everyone else get on with them? (

I was on that combination for ~6 months a few years back and it made little to no difference to my HS.

Pumpkinseeds

Has anyone on Infliximab infusions ever had hives from it? I'm not sure if it's the Infliximab or not, but since Saturday I've been getting odd clusters of itchy small lumps, all on the right side of my body. Saturday morning there were 7 to the side of my left armpit. There aren't masses of them, probably about 15 max at this point and they fade a lot with anti-histamine liquid. It's just surprising me as I usually take Piriton at night to help with itchy sinus tracts.

Over the last few days I'm getting little groups of 3. Physically I don't have any other side effects although I have been feeling very moody and emotional. Not sure if that's just me though. At first I thought the itchy lumps were insect bites but my husband hasn't had any and it's odd they're only on one side of the body.

lockman

Pumpkinseeds wrote: »

Has anyone on Infliximab infusions ever had hives from it?....

I haven't ever experienced hives or anything like it.

I'd mention it to the infusion team before receiving your next infusion.

See also the drug manufacturer's website: http://www.remicade.com

lockman

An interesting paper has recently been published by a UK think-tank organisation (The Hidradenitis Suppurativa Priority Setting Partnership -HSPSP), on directions to be taken in future HS research.

More info on this group can be found in this link:

http://www.ukdctn.org/trials/prioritisation/hidradenitis/

See link below for the abstract of the paper detailing their findings.

http://www.ncbi.nlm.nih.gov/pubmed/24903313

In brief, this group comprising patients, carers and clinicians set out to identify the top priorities in HS research with a view to taking this information to relevant stakeholders (funding bodies, researchers, pharmaceutical companies and so on).

The top 3 HS research funding priorities identified by this organisation were:

(1)What is the most effective and safe group of oral treatments for HS? (2)What is the best management of an acute flare?
(3)What is the impact of the condition and its treatment on people with HS?

The full top 10 can be accessed through the first link above.

Great to see relevant people and group's thinking strategically about HS. Hopefully researchers can take on board the findings and be very focussed in their future HS research.

Pumpkinseeds

That makes interesting reading Lockman. Treatment in the Uk is much worse than in Ireland. I was living there when my HS reached it's worst. In Ireland your GP can refer you to whichever specialist he/she feels is best. In the Uk that doesn't happen with public patients. I was in an awful state when I got to see my Consultant Plastic Surgeon for the 1 and only time.

By that point I'd had multiple incision and drainages as an inpatient followed by weeks of home visits by district nurses to pack the wound. Eventually the surgical wounds stopped healing and the area just got larger and larger, it was my left armpit. I was under a lot of pressure from my employer as a result of my constant sick leave. I would only just be back at work before I was off again. I was in a situation where I'd have an abcess start on say a Friday and by Monday morning it would be so bad I'd be in A&E waiting to be admitted, on my GP's advice.

I had such optimism about seeing the plastic surgeon, my armpit was just a mass of raw tissue and I couldn't use my arm. I'll be honest, at that point the pain was so bad that I had a mantra when I got into bed at night, on the nights when the pain wasn't so bad that I could get into bed and not have to sit in an armchair all night. I just wanted to die if the pain wouldn't stop. It was that bad and had destroyed many things in my life.
The day I saw the surgeon his registrar saw me first and was appalled at how bad it was. He assured me that the Consultant would sort it out and went through where the operation would be done. When the Consultant came to look at it he was very casual about it and told me that he'd seen a lot of 'very interesting skin cancers this morning' and that it would be a long time before he got around to operating on me. In other words a fob off.

I could hear an argument between him and the registrar in the adjoining room but that was that. I left the hospital in tears, I never cry. I lost all hope that day of anything ever being done. Eventually we came back to Ireland and the day I met my Plastic Surgeon here he wanted to admit me straight away and said it was one of the worst cases he'd ever seen. He asked me the name of the surgeon in England and he knew him from previous conferences in the UK. He said he'd be speaking to him about me the next time they met.

As bad as the public waiting lists here can be at least you'll be seen by someone who can't pick and choose what disease interests them most and leave you to quite literally rot while you wait.

cindrella

Had my appointment with professor Kirby today in vincents and all i can say is what an absolute gent. He was very nice sincere and diagnosed hs which i knew would happen he proscribed rifampicin and clindamycin so will start them tomorrow. I have also been asked to be part of a research group for hs so hopefully this will help me and other suffers out there gonna some biopsy done next week. He has a doctor working with him who has wrote many reports on hs she was also a pleasure to deal with came out of there feeling very positive its nice when a doctor actually listens and cares i also told him about boards and about all the information that i got from here about hs so he might have a look on here. Hope all are doing ok x

Gael23

Sounds like its worth the wait to see him although 4 months privately is a long wait.

lockman

cindrella wrote: »

Had my appointment with professor Kirby today in vincents and all i can say is what an absolute gent. He was very nice sincere and diagnosed hs which i knew would happen he proscribed rifampicin and clindamycin so will start them tomorrow. I have also been asked to be part of a research group for hs so hopefully this will help me and other suffers out there gonna some biopsy done next week. He has a doctor working with him who has wrote many reports on hs she was also a pleasure to deal with came out of there feeling very positive its nice when a doctor actually listens and cares i also told him about boards and about all the information that i got from here about hs so he might have a look on here. Hope all are doing ok x

Cindrella,

Thanks for posting and for sharing this with us. Delighted to hear you got on so well with Prof Kirby and his team.

lockman

Pumpkinseeds wrote: »

That makes interesting reading Lockman. Treatment in the Uk is much worse than in Ireland.....

And your post makes for interesting reading also.

I can only comment on what I know: since coming under the care of my surgeon (in 2007) and my dermatologist (in 2010) here in Ireland, I cannot stress enough how good the care I have received is. Both consultants and their teams are very knowledgeable about HS, and both seem really clued in to current developments in HS research. I have received nothing but the best practice in HS treatments from both.

My HS was at its worst in 2010, when I could barely walk (or sit, bend, stoop etc) so severe was the condition. I was also severely depressed by the HS back then. I couldn't work at the time due to the HS and depression, and my groin was literally a smelly, bloody mess. I have had a few operations on the groin area since then, and have been on Infliximab (along with mtx) and my situation has changed profoundly.

I am now back working and I am feeling so good these days that I am going on a walking holiday next week, something I couldn't have dreamed of doing back in 2010. I put the reversal of fortunes down mainly to the care and treatment I have received (along with a few lifestyle changes of my own). The health system in this country comes in for much (merited) criticism, but my own experiences of it (as a public patient) have been very positive overall (the system sucks in parts but I cannot stress enough how good the care for my condition has been).

Hope everyone is doing well.

RJellybean

Hi all

I've just been diagnosed with Hidradenitis today. I'm 38, female and have only being having symptoms for the last 3 years. I have it on my underarms. At the moment my right side has a few open wounds which are leaking pus and my left side is very lumpy and sore and I can see where some old scares are preparing to open. This is the worse breakout I've had and its also the longest.

I did go to my GP a couple of times but both times (2 different docs) they didn't seem to bothered about it and just told me the abscess would clear up with an antibiotic and to lose some weight. I am very overweight so I didn't really push the matter. I had to go the doctors this morning for repeat prescription and there was a locum doctor. I decided as my right arm was so bad I'd ask him to have a look. He immediately said it Hidradenitis Suppurativa and gave me a referral letter for a dermatologist in Tallaght Hospital. He did explain that there wasn't a huge amount that could be done.

I was quite relieved to be able to put a name to the condition but now i'm just scared (I spent a lot of time on the internet today). I know there is a lot I can do myself to help relieve the symptoms. The biggest I know is to lose a lot of weight. The good news is I have started this process before Christmas, I lost 3.5 stone. I did put some of the weight back on over the last couple of months. A good friend passed away in April and I've been struggling a bit with depression. My current breakout started around this time as well. I think being diagnosed might be the motivation I need to get back on the right track.

I decided to post a message as reading over the posts today made me feel that I wasn't on my own and that you all know how I am feeling.

Pumpkinseeds

Hi Rjellybean, I'm glad you found us. First of all I'd say be very careful of what info you find online, some of it can be very dodgy and HS varies from person to person. BAD the British Association of Dermatologists has a very informative site that I found helpful. As far as I recall there are some members of this forum being treated at the same Dermatology department you've been referred to.

I'm a woman and I found it hit my armpits harder than any other areas for a long time. The humidity doesn't help, I find it makes things worse. I'm over weight myself and actively trying to lose it, easier said than done. It's great that the locum recognised the disease, one thing most of us have in common is that we were either undiagnosed or misdiagnosed for years.

There are lots of different treatments now and hopefully you're Dermatologist will get on top of it soon. Feel free to chat or pm me

Pumpkinseeds

I just caught the very last couple of minutes of it, but if anyone is interested Embarrassing Bodies on Channel 4 had a woman with HS on the below the belt areas

. It should be available On Demand.

Pumpkinseeds

I had my 3rd Infliximab infusion earlier this week, thankfully I didn't gain anymore weight. I'll only need them every 6 weeks from now on. So far I haven't noticed any changes but they did tell me that I wouldn't notice an improvement until after the 3rd one, so fingers crossed. Hope everyone's not suffering too much, the humidity is not HS friendly:(

cindrella

Pumpkinseeds wrote: »

I had my 3rd Infliximab infusion earlier this week, thankfully I didn't gain anymore weight. I'll only need them every 6 weeks from now on. So far I haven't noticed any changes but they did tell me that I wouldn't notice an improvement until after the 3rd one, so fingers crossed. Hope oeveryone's not suffering too much, the humidity is not HS friendly:([/quote

that's good hopefully you will see an improvement. So far antibiotics are doing job no new flare ups but hard on rest of body very strange to see your body fluids being bright orange but if it works ill put up with that

Pumpkinseeds

cindrella wrote: »

Pumpkinseeds wrote: »

I had my 3rd Infliximab infusion earlier this week, thankfully I didn't gain anymore weight. I'll only need them every 6 weeks from now on. So far I haven't noticed any changes but they did tell me that I wouldn't notice an improvement until after the 3rd one, so fingers crossed. Hope oeveryone's not suffering too much, the humidity is not HS friendly:([/quote

that's good hopefully you will see an improvement. So far antibiotics are doing job no new flare ups but hard on rest of body very strange to see your body fluids being bright orange but if it works ill put up with that

I think I had those ones a few times, I found them hard on my system. It helped to take some probiotics and flush the antibiotics through with lots of fluids, cranberry juice is good for preventing thrush as well. I used to get the odd bout of thrush with strong antibiotics/anti microbials. I'm glad they're helping you:)

lockman

RJellybean wrote: »

Hi all

I've just been diagnosed with Hidradenitis today. I'm 38, female and have only being having symptoms for the last 3 years. I have it on my underarms. At the moment my right side has a few open wounds which are leaking pus and my left side is very lumpy and sore and I can see where some old scares are preparing to open. This is the worse breakout I've had and its also the longest.

I did go to my GP a couple of times but both times (2 different docs) they didn't seem to bothered about it and just told me the abscess would clear up with an antibiotic and to lose some weight. I am very overweight so I didn't really push the matter. I had to go the doctors this morning for repeat prescription and there was a locum doctor. I decided as my right arm was so bad I'd ask him to have a look. He immediately said it Hidradenitis Suppurativa and gave me a referral letter for a dermatologist in Tallaght Hospital. He did explain that there wasn't a huge amount that could be done.

I was quite relieved to be able to put a name to the condition but now i'm just scared (I spent a lot of time on the internet today). I know there is a lot I can do myself to help relieve the symptoms. The biggest I know is to lose a lot of weight. The good news is I have started this process before Christmas, I lost 3.5 stone. I did put some of the weight back on over the last couple of months. A good friend passed away in April and I've been struggling a bit with depression. My current breakout started around this time as well. I think being diagnosed might be the motivation I need to get back on the right track.

I decided to post a message as reading over the posts today made me feel that I wasn't on my own and that you all know how I am feeling.

Hi RJellybean,

Thanks for sharing your story with us all and glad that you found us here. Pumpkinseeds has provided you with some additional info and resources, and i'd just like to add the following website:
www.hstrust.org/
The HS Trust was set up and is run by HS sufferers and friends, and they will be able to provide you with more information, and may be able to answer any queries of yours.

Please keep in touch and let us know how you are getting on. If you want to ask anything, feel free to post or pm.

Best wishes,

Pumpkinseeds

I don't know if it's the Methotrexate or the Infliximab but I'm hungry all the time. For some reason even after dinner, I'm hungry again within half an hour. Really weird and something I'm going to have to keep a very close watch on. I'm back with the consultant at the end of the month so I'll have a chat with him about it then. Anyone else have the same issue on it?

lockman

Pumpkinseeds wrote: »

I don't know if it's the Methotrexate or the Infliximab but I'm hungry all the time. For some reason even after dinner, I'm hungry again within half an hour. Really weird and something I'm going to have to keep a very close watch on. I'm back with the consultant at the end of the month so I'll have a chat with him about it then. Anyone else have the same issue on it?

I have experienced that also. I was on infliximab for ~ a year before starting on the mtx, and developed a voracious appetite during that year and put on weight, so I put it down to the infliximab.

I still have a huge appetite but try and keep disciplined. I drink lots of water to try and fool myself into feeling full and when able, exercise as much as possible.

lockman

Below is a link to a freely accessible recent overview of the management of skin pain, written by Dr Noah Scheinfeld, who is emerging as a leading authority on HS.

http://www.ncbi.nlm.nih.gov/pubmed/25046456

The paper gives a good review of topical treatments (ointments, creams etc) for skin pain, with an empahsis on HS treatments. It also contains some good tips (see Table 5) on getting the most out of these treatments.

cindrella

HS has settled a lot with antibiotics but find them very hard on system back to see professor Kirby this week hope all are doing good

Pumpkinseeds

cindrella wrote: »

HS has settled a lot with antibiotics but find them very hard on system back to see professor Kirby this week hope all are doing good

I'm glad to hear the antibiotics are helping and they can be very hard on the system. I used to find taking a probiotic while on antibiotics really helped me. I used to get a jar of acidophillus capsules in Holland and Barrett. The live ones that you keep in the fridge once you open the container.

Pumpkinseeds

I seem to be getting a lot more colds since I started the methotrexate and Infliximab. They were mild to begin with but are starting to get a bit worse. I was wiped out for 3 days last week and didn't leave the house. I'd just gotten over that and yesterday I woke up with another sore throat and sneezing. Back on the lemsip, honey and ginger.

Another thing I've noticed is that my teeth have gotten very sensitive. I switched to Sensodyne for a couple of weeks but then my gums started bleeding so I switched back to my Oral B toothpaste. I always seem to have a bad taste in my mouth, not sure if that's normal. Anyway I'm seeing the consultant next week, so I'll see what he says.

Pumpkinseeds

Today is a very rough day. I saw my consultant this morning and he agreed that so far the Infliximab hasn't worked for me, I've had 3 infusions. He suggested I try the anti-tnf injections, which I had to tell him I'd already tried, he didn't know that, apparently. I've to see him again in 3 months and if there's been no improvement he'll stop the Infliximab infusions. I'm not optimistic of miracles happening with only 2 infusions in the next 12 weeks.

I knew that the Infliximab was the last treatment option for me as my surgeon won't operate on anything below the waist. I kind of feel a bit numb and weepy. It all seems very final. It feels like what it is I suppose, a kiss off to go away and rot.