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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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cindrella

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

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

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

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

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

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

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

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

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

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.

lockman

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.

Glad to hear you have gone to a new GP. This new one seems a lot more understanding than the last one, and that helps a lot. Hopefully it will all be onwards and upwards from here. Keep us posted as to how things turn out for you. Take care and mind that cellulitis.

Pumpkinseeds

I started the Methotrexate last night and so far no problems. I took it just after dinner so maybe that helped. Within an hour I felt a bit light-headed and slightly spaced out. My tummy was a bit rumbly but nothing nasty. I went to bed at about 9.30, one of my cats was delighted, he loves coming to bed and racing me up so he got me to himself for an extra couple of hours:)

cindrella

Thanks guys hopefully will be onwards and upwards from here got my notes from.old doctors today he wrote in last entry large abcess again she wanted me to lance and pack as i said i wouldn't be able as i hadn't time don't think she was unhappy with consultation". He thinks i was not happy he was damn right think i may be taking this further as since he couldn't be arsed to treat me i have now cellulitis

Pumpkinseeds

I had my first Infliximab infusion today. All went well thankfully.

lockman

Pumpkinseeds wrote: »

I had my first Infliximab infusion today. All went well thankfully.

One thing to bear in mind in relation to the infliximab is that you may not see an immediate effect. With me, it happened gradually - it was over the course of months before I saw an improvement. With others I have spoken to, they saw an immediate effect (24-48 hours). Different strokes and all that...

I am sure you keep yourself well informed and have probably been well-advised by the medics, but another thing to remember is that between the mtx and and the infliximab, you are taking two very powerful drugs that suppress your immune system. Consequently, even something as mundane as a head cold can take new on new dimensions. I have just recovered from a head cold, and for something that should be shaken in a few days, it instead took weeks to recover.

Pumpkinseeds

lockman wrote: »

One thing to bear in mind in relation to the infliximab is that you may not see an immediate effect. With me, it happened gradually - it was over the course of months before I saw an improvement. With others I have spoken to, they saw an immediate effect (24-48 hours). Different strokes and all that...

I am sure you keep yourself well informed and have probably been well-advised by the medics, but another thing to remember is that between the mtx and and the infliximab, you are taking two very powerful drugs that suppress your immune system. Consequently, even something as mundane as a head cold can take new on new dimensions. I have just recovered from a head cold, and for something that should be shaken in a few days, it instead took weeks to recover.

Yeah, I was aware of that and I'm taking care of myself:). I usually put on hand sanitiser before I go out and I'm forcing myself to eat fruit, and take multivitamins and probiotics. I really don't like much fruit so that's a bit of a chore. The only thing I've noticed is that since I took the first lot of methotrexate last week I keep getting random sharp pains in my head, at the sides really. Nothing that I can't cope with and not headaches really, just the odd random sharp pain.

I'll keep an eye on it, I'm taking the 2nd lot tomorrow night and I have the next infusion in 2 weeks.

Pinkyponk1

Hi Cindrella, that's appalling how your old GP treated you. I had a few similar experiences with GP's, I was looking for a new one after changing address and had a huge abscess on my groin. The first GP I went to just looked at it for a few seconds, diagnosed cellulites & gave me antibiotics. No interest in finding out why it might have occurred or what my history was. The same GP sent me off with a prescription for something for a shoulder injury a few months later that would have been harmful to my (unborn) baby - the pharmacist had to tell me under no circumstances could I use it while pregnant. I changed after that to a different GP and went in to get a course of antibiotics last year for my HS, she didn't even ask to see it and told me in future to call in advance and not waste time coming to see her & she'd leave it out at the front desk.

Only a few months ago I changed to a lovely GP who, as soon as he saw my infections said 'Ok, so that's HS and you need to get it treated'. Such a relief for someone to take it seriously.

On a positive note, I went to see the dermatologist two weeks ago and he diagnosed me as having stage 2 HS. He suggested that I take clindamicin & rifampicin antibiotics and daclain t lotion. I only just started the tabs yesterday and so far so good (no side effects). He's put me on them for 4 months and I have to get my blood tested in 4 weeks to make sure they're not effecting my liver. He told me if they don't work the next course of treatment will be injections but I'm hoping that doesn't happen.

Pumpkinseeds

The injections are fine really. I had Humira and Enbrel, both came in a pre-filled pen thing, like an adrenaline pen. All you have to do is click a button. The Dermatology nurse usually takes you through how to do it properly:) Hopefully you'll have it under control and won't need them though.

cindrella

Well still on antibiotics the big one is nearly healed have a few new ones coming new doctor is sympathetic which helps roll on July till i see dermatologist

lockman

See link below for an abstract to a study looking at the incidence of psychiatric conditions in those with HS.

http://www.ncbi.nlm.nih.gov/pubmed/24909646

It was a fairly large study investigating if there are any links between HS and psychiatric conditions. The authors examined over 3000 patient records for this study.

From the results of the paper, the authors determined that the incidence of depression is ~ twice as high in HS patients than in those without HS, and that the incidence of anxiety is almost twice as high in HS patients than in those without.

A quote from the paper's conclusions reads: Hidradenitis suppurativa was associated with depression and anxiety. Dermatologists treating patients with HS should be aware of this important association

Take good care of yourselves.

Gael23

Does anyone know how long it takes to get an appointment with Brian Kirby? I'm being referred to him with a different skin condition than this one but a lot of people here mention him.

cindrella

ryanf1 wrote: »

Does anyone know how long it takes to get an appointment with Brian Kirby? I'm being referred to him with a different skin condition than this one but a lot of people here mention him.

my doctor referred me to him about three months ago got appointment for next month hes a very nice consultant met him before when my mam was attending him couldn't be nicer which always helps

Gael23

cindrella wrote: »

my doctor referred me to him about three months ago got appointment for next month hes a very nice consultant met him before when my mam was attending him couldn't be nicer which always helps

I just rang his Secretary this morning and she said October which is 4 months so the same as you.
Ive got Psoriasis and he seems to be the person to see

Gael23

Just Got an Appointment with Brian Kirby for 31st of October. €200 is the most expensive consultant I've ever been to

Pumpkinseeds

Has anyone gained weight on Methotrexate or Infliximab? I had my second infusion on Tuesday and I've gained 5kg in the past 2 weeks:eek: I haven't eaten anything different and I haven't had any alcohol. I'm onto my 3rd week of Methotrexate and I'm a bit worried by the sudden weight gain, just wondering if anyone else has experienced this?

lockman

Pumpkinseeds wrote: »

Has anyone gained weight on Methotrexate or Infliximab? I had my second infusion on Tuesday and I've gained 5kg in the past 2 weeks:eek: I haven't eaten anything different and I haven't had any alcohol. I'm onto my 3rd week of Methotrexate and I'm a bit worried by the sudden weight gain, just wondering if anyone else has experienced this?

When I first went on infliximab, my weight did balloon though not as rapidly as what you are seeing.

Rapid weight gain has been reported by many infliximab users, and unfortunately it appears to be a side effect of taking it. It took a while but I am now able to keep control of weight gain through exercise and being very, very careful about what I eat.

Mtx taken alone appears to have the opposite effect i.e many users report weight loss.

Pumpkinseeds

lockman wrote: »

When I first went on infliximab, my weight did balloon though not as rapidly as what you are seeing.

Rapid weight gain has been reported by many infliximab users, and unfortunately it appears to be a side effect of taking it. It took a while but I am now able to keep control of weight gain through exercise and being very, very careful about what I eat.

Mtx taken alone appears to have the opposite effect i.e many users report weight loss.

I'm going to have to start doing some serious excercise and being very careful about diet. It's scary to have put that much weight on so fast. I'm not due another infusion for another 4 weeks so hopefully I'll see a difference.

lockman

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.

And just to add to the above, Prof Brian Kirby's team have just published a review paper specifically focusing on the immunological aspects of the condition. For the paper's abstract, see:

http://www.ncbi.nlm.nih.gov/pubmed/24961484

And from the abstract:

Tumor necrosis factor-α inhibitors have shown promise in the treatment of HS in recent years, and the concept of HS as an immunological condition has come to the fore.

Pumpkinseeds

There has been so little funding going into research of HS. I know that the anti-tnf's are the most successful treatments to date but I'm not convinced that it is actually an immune system problem. Surely if it were then the anti-tnf's would work long-term, but they don't. I've only had 2 infusions so far and I've noticed a real improvement in body aches but not any improvement in the HS.

I will be very careful with diet and really exercise but to be honest if I continue to pile on weight I will just stop having the Infliximab. There's a history of strokes and heart attacks on my dad's side of the family and I'm just not willing to take that risk for the sake of a potential temporary improvement of the HS.

Whippersnapper

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.