Hidradenitis Suppurativa

cindrella · 28-08-2014 5:22pm

Sorry to hear that pumpkin seeds its so upsetting when u pin ur hopes on it working and it doesn't I pray it starts in next few weeks. I was with consultant last week didn't see him but a member of his team who was ok but not same manner as him was disappointed I didn't see him. As I have a a swelling on my forehead that he was interested in. I am attending neurology for past 2 years with it and headaches and have so far had six lumbar puncture and many brain mri s been messed around a lot.

So when he said to me he would help me with this as he had a few ideas what it might be I kinda got my hopes up and then I didn't get to see him I asked woman I seen but she just said we will discuss it in 6 weeks . I just got in the car and cried just everything getting to me.bad enough to have hs without headaches everyday a bump on ur forehead and white lesions on ur brain that they haven't got a diagnosis on testing me for ms etc should have results back soon. On happy not haven't had any new abscess down below since I started antibiotics and arms are starting to settle but worry and stress makes condition worse so until the fix everything else I cant see this improving that much.i can honestly say I hate hospitals and I feel ur pain.

Pumpkinseeds · 28-08-2014 6:37pm

cindrella wrote: »

Sorry to hear that pumpkin seeds its so upsetting when u pin ur hopes on it working and it doesn't I pray it starts in next few weeks. I was with consultant last week didn't see him but a member of his team who was ok but not same manner as him was disappointed I didn't see him. As I have a a swelling on my forehead that he was interested in. I am attending neurology for past 2 years with it and headaches and have so far had six lumbar puncture and many brain mri s been messed around a lot.

So when he said to me he would help me with this as he had a few ideas what it might be I kinda got my hopes up and then I didn't get to see him I asked woman I seen but she just said we will discuss it in 6 weeks . I just got in the car and cried just everything getting to me.bad enough to have hs without headaches everyday a bump on ur forehead and white lesions on ur brain that they haven't got a diagnosis on testing me for ms etc should have results back soon. On happy not haven't had any new abscess down below since I started antibiotics and arms are starting to settle but worry and stress makes condition worse so until the fix everything else I cant see this improving that much.i can honestly say I hate hospitals and I feel ur pain.

There's me moping and you're in a worse situation than me:o I hope they get a definitive diagnosis for the bump soon. Hopefully it won't be ms. I think ms is something that gets bandied around a lot. I remember one of my gp's in England speculating that I had it, I don't. HS can be soul destroying enough to deal with let alone having another chronic medical issue on top of that. Fingers crossed for you and I'm delighted you're HS is more controlled. Long may it last.

lockman · 28-08-2014 7:33pm

Pumpkinseeds wrote: »

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.

Try not to lose hope. I was at my lowest point in 2010 when they started me on the infliximab. It took months (~6 or so) before the infliximab started having any positive effects for me. Different strokes and all that but don't write it off just yet.

lockman · 28-08-2014 7:35pm

Pumpkinseeds wrote: »

HS can be soul destroying enough to deal with let alone having another chronic medical issue on top of that. Fingers crossed for you and I'm delighted you're HS is more controlled. Long may it last.

+1 to the above. Glad to hear of the improvement in the HS and hope the other issue is resolved soon.

Pumpkinseeds · 28-08-2014 8:30pm

lockman wrote: »

Try not to lose hope. I was at my lowest point in 2010 when they started me on the infliximab. It took months (~6 or so) before the infliximab started having any positive effects for me. Different strokes and all that but don't write it off just yet.

I don't have a say in it unfortunately. He's told me that he'll see me in November and if there's no improvement he's going to stop the Infliximab. I'm having an infusion on Tuesday and another 1 six weeks later. I don't feel like he's given me any time. Surely 6 infusions is a bit fast to decide that it isn't working.

I thought I had time. I remember the nurse who handles things at the hospital telling me she and I were going to get to know each other very well as it would be a long process. But then today he's made it clear that isn't going to be the case. he said I'm probably one of those patients who doesn't respond.

What's really frustrating, and this is quite graphic, is that I started bleeding very heavily in the shower from one in the back passage. It wouldn't stop and I had to get my husband to check it for me. He said there was an awful lot of blood, more than he's ever seen it. He had to clean me up as it bled so much it covered me. He thinks there's a tear. I'm with Dermatology tomorrow so I'll get him to take a look at it. I was shocked to see clots from it. Sorry for the graphic image:o

lockman · 29-08-2014 6:00pm

Pumpkinseeds wrote: »

I don't have a say in it unfortunately. He's told me that he'll see me in November and if there's no improvement he's going to stop the Infliximab. I'm having an infusion on Tuesday and another 1 six weeks later. I don't feel like he's given me any time. Surely 6 infusions is a bit fast to decide that it isn't working.

I thought I had time. I remember the nurse who handles things at the hospital telling me she and I were going to get to know each other very well as it would be a long process. But then today he's made it clear that isn't going to be the case. he said I'm probably one of those patients who doesn't respond.

What's really frustrating, and this is quite graphic, is that I started bleeding very heavily in the shower from one in the back passage. It wouldn't stop and I had to get my husband to check it for me. He said there was an awful lot of blood, more than he's ever seen it. He had to clean me up as it bled so much it covered me. He thinks there's a tear. I'm with Dermatology tomorrow so I'll get him to take a look at it. I was shocked to see clots from it. Sorry for the graphic image:o

It does seem like a relatively short time period to trial the infliximab with you. A lot of people report it having almost immediate effects so maybe the consultant is basing his decision on that.

Again I'll stress not to lose hope as new types of similar drugs are coming on the market all the time and your consultant may be willing to try them.

One example is the newish drug called Anakinra (aka Kineret).
en.wikipedia.org/wiki/Anakinra
www.kineretrx.com

It has been used a bit in treating HS and has received some positive (and some negative) reports:
http://www.ncbi.nlm.nih.gov/pubmed/?term=hidradenitis+suppurativa+and+anakinra

I have heard it said that these class of drugs (the anti-TNFs) dont work in ~1/3 of patients, and they have no idea why. That said, it is usually just a matter of trial and error before you find the drug that works for you. The first anti-TNF drug they tried on me was infliximab and it has worked well. Maybe I was damn lucky in that regard.

Also, I have read somewhere that there are up to a dozen or so of these types of drugs in late stages of development i.e. close to coming on the market.

Dont lose hope just yet.

cindrella · 31-08-2014 11:51pm

So annoyed hospitals are a joke my csf fluid sample which took six lumbar punctures to get was sent to France for testing was accidentally destroyed on route. Grrrrr grant me patience no wonder I have a new abcess stressed is not the word I want to kill them.

Pumpkinseeds · 01-09-2014 4:38pm

Thanks lockman, sorry about the delay in replying to your post. I've been wallowing in a bit of self-pity for a few days, now I'm pulling myself out of it. I'm back in Croom tomorrow and I think I've another 2 sessions after that. I'm keeping my fingers crossed that there'll be some improvement. One thing that puzzles me is that nobody in Rheumatology has examined me at any stage. I just find it peculiar that they didn't even bother to take a look at what it was they were treating me for. Oh well, it is what it is.

lockman · 04-09-2014 8:31pm

Pumpkinseeds wrote: »

Thanks lockman, sorry about the delay in replying to your post. I've been wallowing in a bit of self-pity for a few days, now I'm pulling myself out of it. I'm back in Croom tomorrow and I think I've another 2 sessions after that. I'm keeping my fingers crossed that there'll be some improvement. One thing that puzzles me is that nobody in Rheumatology has examined me at any stage. I just find it peculiar that they didn't even bother to take a look at what it was they were treating me for. Oh well, it is what it is.

Hope you are doing a bit better now.

I think all HS sufferers (and indeed those with long-term illnesses) need to retreat into a corner from time to time to lick their wounds.

FYI, in all the time I have been receiving infliximab, I have only been examined once by the infusion people, and that was the day I started on it. I am usually asked how it is, have I developed any new lesions in the last 8 weeks etc.

I met with a new derm recently and after a cursory glance she decided I should come off the infliximab (it is the only drug that has ever helped me). My usual derm suggested a compromise - that I skip an infusion and see how I get on (I did and am suffering as a result). I fear that the consultants are coming under a lot of pressure to meet cutback targets and as the anti-TNFs are so expensive, they have become likely targets. Hope I am wrong on that as although they may cost a lot, the anti-TNFs have tremendous value as they have helped enormously in many severe cases, like mine.

Pumpkinseeds · 05-09-2014 4:56pm

I totally agree Lockman. I know that the Humira and all the anti-tnf pens come from a seperate scheme but the infusions come out of the departments budget. He actually told me that the Infliximab is an off label use for the HS and starting suggesting the pens, well the pens are an off label use as well. I'm OK now, emotionally. It's just difficult to come to terms with the idea of the bottom area becoming as horrendous as the axilla was pre surgery.

All I can do is wait and see what happens between now and the end of November.

Pumpkinseeds · 05-09-2014 8:01pm

One thing I've noticed with the Infliximab infusions is that the day after an infusion I have no pain in my neck or joints, but it only lasts for a day, nice all the same.

Pumpkinseeds · 07-09-2014 3:12pm

I'm having a couple of nasty flare ups this week, armpit and bum cheek:o both on the right side. But I'm trying to be proactive now, so I went and bought some tracksuit bottoms, trainers and t-shirts earlier to go speed walking from tomorrow night. As much as I feel self conscious about power walking, losing weight will not just help with the HS, but will be an excellent way of clearing my head and sweating out the stress.

I love when the Autumn/Winter arrives, it's so much more HS friendly than any other time of year. I hope everyone is doing ok and not in much pain.

lockman · 07-09-2014 5:31pm

Pumpkinseeds wrote: »

I'm having a couple of nasty flare ups this week, armpit and bum cheek:o both on the right side. But I'm trying to be proactive now, so I went and bought some tracksuit bottoms, trainers and t-shirts earlier to go speed walking from tomorrow night. As much as I feel self conscious about power walking, losing weight will not just help with the HS, but will be an excellent way of clearing my head and sweating out the stress.

I love when the Autumn/Winter arrives, it's so much more HS friendly than any other time of year. I hope everyone is doing ok and not in much pain.

HS-permitting, I go walking as often as possible. As you pointed out, it helps with losing weight and consequently with the HS, and importantly is great for the mind too.

Autumn/winter are indeed a lot more HS-friendly. I have started wearing shorts all the time when in the house. Its a simple step but it makes a difference.

lockman · 09-09-2014 8:20pm

lockman wrote: »

I met with a new derm recently and after a cursory glance she decided I should come off the infliximab (it is the only drug that has ever helped me). My usual derm suggested a compromise - that I skip an infusion and see how I get on (I did and am suffering as a result)....

I have been given a reprieve of sorts. I met today with my usual dermatologist and one look at my nether regions convinced him that I should go back on the infliximab asap. I missed/skipped a dose ~ 3weeks ago and have developed 2 new lesions and seen the re-emergence of an old dormant one in that short space of time.

My dermatologist is also referring me for yet more surgery in the groin region (this will be my fourth groin operation in ~ 2 years).

Pumpkinseeds · 10-09-2014 12:59pm

lockman wrote: »

I have been given a reprieve of sorts. I met today with my usual dermatologist and one look at my nether regions convinced him that I should go back on the infliximab asap. I missed/skipped a dose ~ 3weeks ago and have developed 2 new lesions and seen the re-emergence of an old dormant one in that short space of time.

My dermatologist is also referring me for yet more surgery in the groin region (this will be my fourth groin operation in ~ 2 years).

The surgery sucks, especially in moist areas. It's very frustrating when the dormant ones become active again too. Interesting how only a very short break in your infusions led to a flare up. I hope things settle down for you soon.

lockman · 10-09-2014 3:31pm

Pumpkinseeds wrote: »

The surgery sucks, especially in moist areas. It's very frustrating when the dormant ones become active again too. Interesting how only a very short break in your infusions led to a flare up. I hope things settle down for you soon.

I had hoped the surgery was a thing of the past but not to be.

I was surprised at how quickly the HS reappeared on my brief break from the infliximab. My dermatolgist wasn't surprised.....

I had been doing very well in recent months. This condition has a habit of hitting you for six just when you think you have gotten on top of it.

Pumpkinseeds · 10-09-2014 4:24pm

lockman wrote: »

I had hoped the surgery was a thing of the past but not to be.

I was surprised at how quickly the HS reappeared on my brief break from the infiximab. My dermatolgist wasn't surprised.....

I had been doing very well in recent months. This condition has a habit of hitting you for six just when you think you have gotten on top of it.

That's one of the worst parts about the disease. I've had some stages where it's been very dormant, to the point of almost being inactive, then it kicks in very, very fast.

lockman · 14-09-2014 8:00pm

Some interesting stats on HS research.
Below is a list (kindly compiled by our French friends at www.afrh.fr) on the number of medical papers on the topic, going back to the 1940's. Encouraging to see such an increase in recent years.

1940
Year 1947 - 1 items
Year 1949 - 2 items

1950
Year 1950 - 5 items
Year 1951 - 3 items
Year 1952 - 1 items
Year 1953 - 1 items
Year 1955 - 2 items
Year 1958 - 3 items
Year 1959 - 2 items

1960
Year 1960 - 1 items
Year 1962 - 2 items
Year 1963 - 1 items
Year 1964 - 1 items
Year 1965 - 3 items
Year 1966 - 1 items
Year 1967 - 4 items
Year 1968 - 3 items
Year 1969 - 2 items

1970
Year 1970 - 4 items
Year 1971 - 1 items
Year 1972 - 6 items
Year 1973 - 4 items
Year 1974 - 3 items
Year 1975 - 3 items
Year 1976 - 9 items
Year 1977 - 4 items
Year 1978 - 4 items
Year 1979 - 1 items

1980
Year 1980 - 7 items
Year 1981 - 3 items
Year 1982 - 11 items
Year 1983 - 8 items
Year 1984 - 14 items
Year 1985 - 11 items
Year 1986 - 8 items
Year 1987 - 10 items
Year 1988 - 12 items
Year 1989 - 4 items

1990
Year 1990 - 9 items
Year 1991 - 14 items
Year 1992 - 13 items
Year 1993 - 12 items
Year 1994 - 12 items
Year 1995 - 11 items
Year 1996 - 21 items
Year 1997 - 26 items
Year 1998 - 11 items
Year 1999 - 21 items

2000
Year 2000 - 16 items
Year 2001 - 24 items
Year 2002 - 20 items
Year 2003 - 20 items
Year 2004 - 25 items
Year 2005 - 32 items
Year 2006 - 27 items
Year 2007 - 38 items
Year 2008 - 43 items
Year 2009 - 60 items

2010
Year 2010 - 76 items
Year 2011 - 60 items
Year 2012 - 83 items
Year 2013 - 92 items
Year 2014 - 88 items

Pumpkinseeds · 18-09-2014 6:44pm

I'm back at Dermatology tomorrow. I'm going to phone them in the morning to double check as I didn't get the text reminder last time but I did have the appointment date, of course I forgot to bring the letter that day, so I didn't get seen. I got the text reminder this time but 4 buses is a lot only to find out that you're appointment has been rescheduled and nobody let you know.:mad:

I think this is just a token visit, not really sure what he can say or do. I haven't noticed any improvement with the Infliximab, still fingers crossed and all that. I've increased my walking route from 2 to 4 miles, my legs are killing me today but I find it great for clearing my head and helping things drain. If the Infliximab doesn't work then the surgeon will only do the arm, but he wants me to loose weight and he's right. So I figure it's time to sort my weight out and stop comfort eating.:o

lockman · 18-09-2014 7:28pm

Pumpkinseeds wrote: »

I'm back at Dermatology tomorrow. I'm going to phone them in the morning to double check as I didn't get the text reminder last time but I did have the appointment date, of course I forgot to bring the letter that day, so I didn't get seen. I got the text reminder this time but 4 buses is a lot only to find out that you're appointment has been rescheduled and nobody let you know.:mad:

I think this is just a token visit, not really sure what he can say or do. I haven't noticed any improvement with the Infliximab, still fingers crossed and all that. I've increased my walking route from 2 to 4 miles, my legs are killing me today but I find it great for clearing my head and helping things drain. If the Infliximab doesn't work then the surgeon will only do the arm, but he wants me to loose weight and he's right. So I figure it's time to sort my weight out and stop comfort eating.:o

Good luck with the dermatology appointment. Hope the consultant doesn't give up on the infliximab just yet.

And fair play with the walking. I know it can be hard to get going but it can be very rewarding.

I've lost a bit of weight since starting to walk regularly and have noticed an overall improvement in the HS since taking up walking (though it could be due to other factors also - hard to determine exactly which one(s) have made the difference). I've posted a few papers by New York dermatologist Noah Scheinfeld here in the past, and in his experience (>400 HS patients treated) he maintains that losing weight is the best thing anyone can do for their HS.

Best of luck.

Moyglish · 18-09-2014 9:19pm

I wonder if there will be any allowances made with regards to water charges, once they are implemented, for those with Hidradenitis suppaurativa seeing as personal hygiene is so important for those with this condition, like the way there will be for those on the Long Term Illness scheme?

Gael23 · 18-09-2014 9:45pm

Does Prof Kirby have much of a team around him or is it mostly just himself you deal with? He sounds like a great Doctor, going to see him in a few weeks time.

cindrella · 19-09-2014 9:04am

ryanf1 wrote: »

Does Prof Kirby have much of a team around him or is it mostly just himself you deal with? He sounds like a great Doctor, going to see him in a few weeks time.

He has a team but what I have witnessed is that he is very much hands on he will definitely see u first time maybe just his team the next but they report.to him before u leave and if he feels he needs to see u he will come in after speaking to them. I have been quite a few times and every time he was in the clinic.

He definitely knows his stuff and has a great manner.

Gael23 · 19-09-2014 9:23am

cindrella wrote: »

He has a team but what I have witnessed is that he is very much hands on he will definitely see u first time maybe just his team the next but they report.to him before u leave and if he feels he needs to see u he will come in after speaking to them. I have been quite a few times and every time he was in the clinic.

He definitely knows his stuff and has a great manner.

I do get the feeling he's really good, thats why I've waited 4 months to see him.
I will be seeing him in Vincents Private if that makes a difference?

cindrella · 19-09-2014 11:15am

ryanf1 wrote: »

I do get the feeling he's really good, thats why I've waited 4 months to see him.
I will be seeing him in Vincents Private if that makes a difference?

I'm sure u will have direct contact with him don't think he's the type who treats private and public any different not like the many other doctors I have dealt with

lockman · 19-09-2014 8:38pm

Moyglish wrote: »

I wonder if there will be any allowances made with regards to water charges, once they are implemented, for those with Hidradenitis suppaurativa seeing as personal hygiene is so important for those with this condition, like the way there will be for those on the Long Term Illness scheme?

I'd take a few baths per week and did bathe daily when at my worst with HS. It is because of situations like the impending water charges that it is regrettable that there is no HS charity/advocacy group/trust etc operating in Ireland who could lobby on our behalf.

The relevant minister has recently stated that water allowances will be made for those with certain medical conditions.

According to the citizens information website:
Charges will be capped for people whose medical condition requires extra water usage – this will include people who are on kidney dialysis at home. The Minister for the Environment, Community and Local Government will determine other qualifying conditions in consultation with the Minister for Health.
http://www.citizensinformation.ie/en/environment/water_services/water_charges.html

There are many medical conditions, such as HS, where bathing is used to treat the conditions.

Pumpkinseeds · 21-09-2014 7:40pm

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.

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.

teacherspet · 22-09-2014 2:12pm

What Hospital does Prof Kirby attend ?

Gael23 · 22-09-2014 2:15pm

teacherspet wrote: »

What Hospital does Prof Kirby attend ?

My appointment is in Vincents Private but I don't know of he spends all his time there or not

cindrella · 22-09-2014 2:58pm

I see in public part of st vincents dermatology unit just in grounds of main hospital

Hidradenitis Suppurativa

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