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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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Gael23

How long is the wait to see him in the public clinic?

cindrella

Waited 3 months to see him as a public patient

Gael23

I have a 4 month wait to see him as a private patient, although as I'm a new patient it may be longer for the first time

cindrella

ryanf1 wrote: »

I have a 4 month wait to see him as a private patient, although as I'm a new patient it may be longer for the first time

I was also a new patient maybe I got lucky when are u due to see him

Gael23

cindrella wrote: »

I was also a new patient maybe I got lucky when are u due to see him

31st October but I was referred by my GP in the middle of June.

Pumpkinseeds

I've got a nasty urinary tract infection and some thrush on the groin, lovely:(. I've never had either before so I'm just wondering if it's a result of the Infliximab or Methotrexate, and if anyone's had the same thing? I got some antibiotics this morning and hopefully they'll kick in soon. I forgot to ask my gp if I should take the Methotrexate this week since I've got the UTI, so I'm going to have to phone him tomorrow and check as I take the Methorexate on a Thursday night.

lockman

Pumpkinseeds wrote: »

I had an interesting and informative dermatology consult last Friday. It was nice to have a chat with a consultant that actually seemed interested in helping me. She agrees with rheumatology that the Infliximab doesn't seem to be helping me, but feels that there are 2 other self-administered anti-tnf's that might be worth trying if the rheumatologist stops the Infliximab infusions. At this point I'll try most things.

Good news. At least your derm is keeping the anti-TNF door open and is willing to try some others. Hopefully ye will hit upon at least one that works for you.

Pumpkinseeds wrote: »

On the plus side, I've lost 7kg since I was last with Dermatology in May:D Which was a nice surprise, I don't believe in weighing myself as I prefer to judge by how comfortable or uncomfortable my clothes are. The walking is really helping with the weight and stress. I'm flaring a bit today after a really stressful night with the next door nightmares and partying. Long story but I wouldn't wish our neighbours on anyone, nuff said.:) I hope everyone is doing well.

Well done you! Fingers crossed that you will see an improvement in the HS symptoms as a result.

And glad to hear you are enjoying the walking: I find it helpful on many levels.

lockman

Pumpkinseeds wrote: »

I've got a nasty urinary tract infection and some thrush on the groin, lovely:(. I've never had either before so I'm just wondering if it's a result of the Infliximab or Methotrexate, and if anyone's had the same thing? I got some antibiotics this morning and hopefully they'll kick in soon. I forgot to ask my gp if I should take the Methotrexate this week since I've got the UTI, so I'm going to have to phone him tomorrow and check as I take the Methorexate on a Thursday night.

Ouch. Fortunately, I havent had to endure anything like that but they do state with resect to both the inflximab and the mtx, that one is more susceptible to bacterial infections.

lockman

Some recent reports suggest that the anti-TNF Humira (a.k.a adalimumab) is closer to gaining regulatory approval for the treatment of moderate-to-severe HS. This would be good news for HS sufferers: if it is approved, more medics will be likely to prescribe it and insurance companies would be more likely to fund them (Humira is very expensive and it costs an estimated $15000-25000 to treat one patient for one year).

New Hope for Patients Hidradenitis Suppurativa

Results from a Phase 3 pivotal study demonstrating that adalimumab (Humira, AbbVie) is effective in reducing common clinical signs and symptoms in moderate-to-severe hidradenitis suppurativa (HS), specifically the number of abscesses and inflammatory nodules. These data were presented at the 44th Annual European Society for Dermatological Research (ESDR) Meeting in Copenhagen, Denmark. Currently no approved treatment options available for patients living with HS, a skin disease, which impacts approximately 1 percent of the adult population worldwide.

For more, see: http://www.the-dermatologist.com/content/new-hope-patients-hidradenitis-suppurativa

lockman

A freely available, and highly readable, review paper on HS has just been published.

Neither of the authors has publsihed extensively on HS in the past (just a few previous papers on HS) but it is interesting to read the emphasis the authors put on diet and particularly a dairy-free diet.

Full text is available here:
http://www.bestpracticeobgyn.com/article/S1521-6934%2814%2900136-9/fulltext

Pumpkinseeds

Those papers make interesting reading. I'm vegetarian and have been for 5 years, so I have a carb heavy diet. I don't eat much dairy and I take a probiotic multivitamin as well as Iron pills and cod liver oil. I must ask my neurologist about Zinc when I see him in December, sometimes it can affect Epilepsy when there is too much or too little of it in the body.

lockman

lockman wrote: »

Some recent reports suggest that the anti-TNF Humira (a.k.a adalimumab) is closer to gaining regulatory approval for the treatment of moderate-to-severe HS. This would be good news for HS sufferers: if it is approved, more medics will be likely to prescribe it and insurance companies would be more likely to fund them (Humira is very expensive and it costs an estimated $15000-25000 to treat one patient for one year).

New Hope for Patients Hidradenitis Suppurativa

Results from a Phase 3 pivotal study demonstrating that adalimumab (Humira, AbbVie) is effective in reducing common clinical signs and symptoms in moderate-to-severe hidradenitis suppurativa (HS), specifically the number of abscesses and inflammatory nodules. These data were presented at the 44th Annual European Society for Dermatological Research (ESDR) Meeting in Copenhagen, Denmark. Currently no approved treatment options available for patients living with HS, a skin disease, which impacts approximately 1 percent of the adult population worldwide.

For more, see: http://www.the-dermatologist.com/content/new-hope-patients-hidradenitis-suppurativa

More good news on this series of studies. The second phase of the study is now being reported on and it too shows promising results for Humira in the treatment of HS.

Adalimumab scores big in trials for hidradenitis suppurativa

Vitals

Key clinical point: Adalimumab appears to have the inside track in the race to become the first-ever approved therapy for hidradenitis suppurativa, a debilitating skin condition affecting roughly 1% of adults.

Major finding: At 12 weeks, 59% of adalimumab-treated patients with moderate to severe hidradenitis suppurativa showed at least a 50% reduction from baseline in total abscesses and inflammatory nodules, compared with 28% of placebo-treated controls.

Data source: A multicenter, double-blind, placebo-controlled, phase III randomized trial involving 326 patients.

For more, see:
http://www.skinandallergynews.com/news/news/single-article/adalimumab-scores-big-in-trials-for-hidradenitis-suppurativa/accd3066a5e1bf59264052a7306f1098.html

Pumpkinseeds

I had what was probably my last Infliximab infusion yesterday. I say last as I'm due to see the consultant the same week as my next infusion would be due and he had told me that if there wasn't any improvement that he would stop the infusions. I haven't had any improvement at all on it and the nurse changed the appointment until later that week to save me having an unnecessary infusion. One thing I will say about anti-tnf's is that judging from the vast age spectrum and range of diseases, they seem to have a fantastic effect on many people and illnesses.

According to my Derm there are 2 more self-administered anti-tnf's I can try, I don't remember what they're called. I've tried Enbrel and Humira without any success but then again different strokes for different folks.:D There does seem to be more and more treatment options becoming available, which is a great thing for everyone with HS.:)

lockman

Pumpkinseeds wrote: »

I had what was probably my last Infliximab infusion yesterday. I say last as I'm due to see the consultant the same week as my next infusion would be due and he had told me that if there wasn't any improvement that he would stop the infusions. I haven't had any improvement at all on it and the nurse changed the appointment until later that week to save me having an unnecessary infusion. One thing I will say about anti-tnf's is that judging from the vast age spectrum and range of diseases, they seem to have a fantastic effect on many people and illnesses.

According to my Derm there are 2 more self-administered anti-tnf's I can try, I don't remember what they're called. I've tried Enbrel and Humira without any success but then again different strokes for different folks.:D There does seem to be more and more treatment options becoming available, which is a great thing for everyone with HS.:)

Pity the infliximab hasn't worked out for you. At least your derm appears to be clued in and up-to-date on the anti-TNFs and is willing to try other varieties. Hopefully you will find one soon that helps with your HS.

cindrella

My hs is crazy at minute but unfortunately I know its because I'm stressed. Had a bad few weeks with my mam been in hospital finding out she has a heart condition getting sick myself with stomach infection and now being treated with depression medication to help with my anxiety.

And now my mams sister has just died and I have to break the news to her waiting till tomorrow when siblings are around sometimes being a fulltime carer is tough .

Pumpkinseeds

I'm really sorry to hear that Cindrella, I hope things get easier for you soon. Maybe you should boost your immune system with some Pharmaton and a good probiotic like Acidophillus. The pharmaton are designed for stressful times and for when you feel worn out, so are best used for a few months only.

lockman

cindrella wrote: »

My hs is crazy at minute but unfortunately I know its because I'm stressed. Had a bad few weeks with my mam been in hospital finding out she has a heart condition getting sick myself with stomach infection and now being treated with depression medication to help with my anxiety.

And now my mams sister has just died and I have to break the news to her waiting till tomorrow when siblings are around sometimes being a fulltime carer is tough .

Sorry to hear your bad news Cindrella.

In my experience, there is a strong link between stress and the HS. Take care of yourself.

Whippersnapper

Hey all,

How many people on here are in the Republic of Ireland and would be interested in taking part in a research group on our illness? (I know many of you might already be signed up)

I've been part of a UK study over the last few months. You basically get a log-in and answer a couple of questions each week. I find it very useful. They currently need more people from the south of Ireland to contribute. There's usually an incentive of some sort (Amazon vouchers etc). The more they can learn from us the better chance of a cure!

If any of you guys might interested send me a PM as soon as you can and I can put you in contact with the woman looking after our part of the world.

These are the guys running the study: http://opinionhealth.com/

cindrella

lockman wrote: »

Sorry to hear your bad news Cindrella.

In my experience, there is a strong link between stress and the HS. Take care of yourself.

Yeah eve dermatology told me this a couple of months ago when I wasn't feeling depressed or anxiety.
Trying to keep myself busy and my mams spirits lifted she is bio polar anyway and is unwell at minute and is taking her sisters death bad her blood pressure is up don't know if that's because she is unwell and on antibiotics or anxiety afraid something will happen to her sorry to bore u all

Gael23

Does Prof Kirby give you a decent amount of time? I have a few things I want to ask him but not sure if I will have enough time. My appointment is next week so starting to put together some questions

cindrella

ryanf1 wrote: »

Does Prof Kirby give you a decent amount of time? I have a few things I want to ask him but not sure if I will have enough time. My appointment is next week so starting to put together some questions

Yes he will give you about five minutes or so u will speak with his team first and then he will come in and talk to u

Gael23

cindrella wrote: »

Yes he will give you about five minutes or so u will speak with his team first and then he will come in and talk to u

5 minutes?
I'll be seeing him in vin cents private so I think you go directly to him there rather than members of his team

Whippersnapper

Here's a link for anyone wishing to join the research group.

http://survey.opinionhealth.co.uk/uc/HS/?a=&b=SIGNUP

Gael23

Saw Dr Kirby on Friday. He changed my treatment quite radically and I'm not sure that its going to work for me but I will try. If its a case it doesn't, is it a big deal to get to see him to discuss an alternative?

PorridgeHead

ryanf1 wrote: »

Saw Dr Kirby on Friday. He changed my treatment quite radically and I'm not sure that its going to work for me but I will try. If its a case it doesn't, is it a big deal to get to see him to discuss an alternative?

Prof Kirby has been seeing my Daughter for a couple of years now. He has frequently changed her meds, though he has a fondness for Minicin (Minox) as the platform drug. He is seeing more and more HS Sufferers these days, and his knowledge is probably the best in the country.

He will need to check several treatments because, as we are starting to know, what works for "jack" may not work for "jill". It is important to keep in touch with his office in between consults, and let him know immediately if you feel the Meds are not working, and also if they ARE.... so he can try them with other patients.

cindrella

Got two new abscess in groin area one is same size as a golf ball just want it to drain hot baths etc any other tips to help it drain sick of going to doctor with them ðŸ˜¢

Pumpkinseeds

cindrella wrote: »

Got two new abscess in groin area one is same size as a golf ball just want it to drain hot baths etc any other tips to help it drain sick of going to doctor with them ðŸ˜¢

That sucks.:( I used to get some sort of poltice stuff from the pharmacy years ago, can't remember what it's called. I have hear of people making a bread poltice to draw it out. I hope they drain soon for you. Some people recommend putting Vicks vaporub on the abcess to ease the pain and I vaguely remember a minty smell from bread poltices my mum used to make me when I was in my teens.

lockman

cindrella wrote: »

Got two new abscess in groin area one is same size as a golf ball just want it to drain hot baths etc any other tips to help it drain sick of going to doctor with them ðŸ˜¢

Ouch. Just to echo what Pumpkinseeds suggested, I use a bread-based poultice after a hot bath when flaring in the nether regions. Sometimes they appear to help.

cindrella

lockman wrote: »

Ouch. Just to echo what Pumpkinseeds suggested, I use a bread-based poultice after a hot bath when flaring in the nether regions. Sometimes they appear to help.

It burst on its own but its still big and hard and full and not draining went to doctor he had a look and said if it gets worse come back normally when it opens it drains but its open and not draining and sore but not as sore as it was

Pumpkinseeds

I've been getting recurring Urinary Tract Infections for the past few weeks so I wasn't taking the methotrexate for 3 weeks. I decided to have a weak gin and tonic on Saturday and was fine, last night I had 1 double with a lot of tonic, huge mistake. I felt really ill really fast, didn't think it would affect me since I hadn't had the methotrexate for weeks. Just goes to show that these things really do have a big impact on the body.