Hidradenitis Suppurativa

lockman

Pumpkinseeds wrote: »

... I'm glad that Trish got an accurate diagnosis at such a young age, it can make all the difference treatment wise. Many of us, including myself, went undiagnosed/misdiagnosed for many years. I had my first abcess at about 13 or 14 and it wasn't until I was in my late 20's that I was actually given a name for the disease. So at least the medical profession is becoming more aware of HS.

+1 to the early diagnosis. It can make a big difference treatment wise.
I went misdiagnosed for ~20 years before HS was mentioned.

Pumpkinseeds

I've been invited to attend a clinic where Dermatologists from Munster get together to look at challenging cases and see if as a group they can come up with new suggestions. I attended one in Galway a few years ago which didn't help me but I'm going because I don't think stage 3 is very common in Ireland and I think it's a good idea to let as many dermatologists as possible see what a case of stage 3 is like in a person as opposed to an image in a journal or online article and to see how it can impact on quality of life.

lockman

Pumpkinseeds wrote: »

I've been invited to attend a clinic where Dermatologists from Munster get together to look at challenging cases and see if as a group they can come up with new suggestions. I attended one in Galway a few years ago which didn't help me but I'm going because I don't think stage 3 is very common in Ireland and I think it's a good idea to let as many dermatologists as possible see what a case of stage 3 is like in a person as opposed to an image in a journal or online article and to see how it can impact on quality of life.

That is potentially good news. Thanks for sharing.

Potentially great for you in that maybe all those assembled experts might be able to come up with a solid treatment plan for you.

It is also a great way to help raise awareness of HS amongst healthcare professionals. As you point out, you may be able to bring to life just how this condition can impact on one's life. It is a great opportunity for the dermatologists to learn about the reality of living with HS.

Hope it works out well for you, and please keep us posted,

Pumpkinseeds

I'm really struggling with it at the moment, tbh I'm finding it overwhelming. I'm a strong person and I don't do tears but I'm a weepy angry mess this week. I think it's just the fact that I'm down to 1 or 2 possible treatments that nobody really holds any hope of success about and confronting the reality of living with this disease at a steadily worsening rate, without treatment options is just too much to cope with right now. Just trying to get my head around it.

lockman

Pumpkinseeds wrote: »

I'm really struggling with it at the moment, tbh I'm finding it overwhelming. I'm a strong person and I don't do tears but I'm a weepy angry mess this week. I think it's just the fact that I'm down to 1 or 2 possible treatments that nobody really holds any hope of success about and confronting the reality of living with this disease at a steadily worsening rate, without treatment options is just too much to cope with right now. Just trying to get my head around it.

Sorry to hear you are struggling at the moment. There is that old expression about 'night being darkest just before the dawn'....

If it is any consolation, I was in a similar position not too long ago. I was really struggling with it both physically and emotionally prior to starting the infliximab, which my dermatologist considered to be one of the last throws of the dice for me. Since going on it , I have, albeit very slowly, seen a big change in my HS. add to that a few surgeries, a couple of modifications to my lifestyle, and I am now a different person.

New drugs and treatment options for HS are becoming available all the time, so try not to give up hope just yet.

Pumpkinseeds

lockman wrote: »

Sorry to hear you are struggling at the moment. There is that old expression about 'night being darkest just before the dawn'....

If it is any consolation, I was in a similar position not too long ago. I was really struggling with it both physically and emotionally prior to starting the infliximab, which my dermatologist considered to be one of the last throws of the dice for me. Since going on it , I have, albeit very slowly, seen a big change in my HS. add to that a few surgeries, a couple of modifications to my lifestyle, and I am now a different person.

New drugs and treatment options for HS are becoming available all the time, so try not to give up hope just yet.

Thanks, I'm OK now, I seem to have a bit of an emotional melt down about it every 10 years, so not too bad.:D I'm keeping my fingers crossed for future developments, hell, 10 years ago immunosuppressant treatments weren't offered to patients with HS, so who knows what the future holds. Positive thinking and all that.

lockman

See link for an abstract of a Feb 2015 HS review paper from Prof B. Kirby's group.

http://www.ncbi.nlm.nih.gov/pubmed/25708371

They dont give much away in the abstract except to say that their paper reviews medical and laser treatments for HS.

lockman

See link for a research paper linking HS to decreased endothelial progenitor cells (EPCs), which among other things, play a role in blood vessel formation. The paper looks at EPC levels in HS patients versus controls. From the last line of the abstract:
A decreased number of EPCs among HS sufferers may contribute to endothelial malfunction resulting in increased cardiovascular risk in this group of patients

As if we dont have enough to be dealing with :rolleyes:

http://www.ncbi.nlm.nih.gov/pubmed/25721353

lockman

Post #399 has a link to a paper citing a possible link between HS and cardiovascular problems.
See link below for a paper suggesting a link between HS and renal (kidney) dysfunction.

http://www.ncbi.nlm.nih.gov/pubmed/25710874


The good news just keeps on coming for those of us with HS!!

Pumpkinseeds

I've been really self-concious of the massive scarring from the surgery under my left armpit. So much so that I usually end up hiding it under long sleeves in the Summer. I stumbled across some images online of tattoos people had done over scars to cover the scarring and I'm thinking of having it done. I had a chat with a chap this morning and we worked out a design that I like and that is workable. He's going to do a test next week with the tattoo gun thingy with no ink in it to check that it won't be too painful for me.

Due to the size of the area it'll take 3 to 4 hours to do, if there's no problem with the trial run next week. I'm gonna have to scrape and save to afford it but I really like the idea of having it covered with a Cheshire cat tattoo instead of all the scar tissue. I'd be happy to wear sleeveless or short sleeved tops if the scars were covered.

lockman

Pumpkinseeds wrote: »

I've been really self-concious of the massive scarring from the surgery under my left armpit. So much so that I usually end up hiding it under long sleeves in the Summer. I stumbled across some images online of tattoos people had done over scars to cover the scarring and I'm thinking of having it done. I had a chat with a chap this morning and we worked out a design that I like and that is workable. He's going to do a test next week with the tattoo gun thingy with no ink in it to check that it won't be too painful for me.

Due to the size of the area it'll take 3 to 4 hours to do, if there's no problem with the trial run next week. I'm gonna have to scrape and save to afford it but I really like the idea of having it covered with a Cheshire cat tattoo instead of all the scar tissue. I'd be happy to wear sleeveless or short sleeved tops if the scars were covered.

Did you do the trial run? If so, how did it work out?

lockman

I've been reading a lot of people say that they apply Vicks to their HS lesions with many reporting positive experiences.

Just wondering if anybody here has tried it and if so, what were their experiences like?

I'm probably wrong but I assume that it would sting?

Pumpkinseeds

lockman wrote: »

Did you do the trial run? If so, how did it work out?

I chickened out until I run it past my Dermatologist at next months appointment.:o

Pumpkinseeds

lockman wrote: »

I've been reading a lot of people say that they apply Vicks to their HS lesions with many reporting positive experiences.

Just wondering if anybody here has tried it and if so, what were their experiences like?

I'm probably wrong but I assume that it would sting?

The pain is negligible compared to the pain of the cyst and only lasts a minute before it numbs the skin. I also use it for bad headaches by rubbing a little bit on each temple.

Pumpkinseeds

My mum is going through menopause and had been having a really rough time with heavy sweating through hot flushes and night sweats so bad that they were keeping her awake at night. She started taking Sage pills 3 times a day, 2 in the morning and 1 at night and she says it's brilliant. The sweating has stopped and she's able to sleep now. It might be worth a try for HS, especially during the Summer months. I'm thinking of trying it myself but I've got Epilepsy and I want to run it by my neurologist next time I see him as I don't want to risk exacerbating it.

lockman

Pumpkinseeds wrote: »

The pain is negligible compared to the pain of the cyst and only lasts a minute before it numbs the skin. I also use it for bad headaches by rubbing a little bit on each temple.

Well, you learn something new everyday. Probably worth a try so. I am willing to try just about anything that might help with this..

lockman

See link for the latest interesting paper from New York clinician Dr Noah Scheinfeld. He publishes regularly on HS and has vast experience in treating the condition:

http://www.ncbi.nlm.nih.gov/pubmed/25756493

lockman

See link for a paper just published by an Israeli group that examined 3000+ HS patients and draws a link between HS and metabolic syndrome, and other related conditions.

http://www.ncbi.nlm.nih.gov/pubmed/25760289

Increasingly of late, I am reading about HS and this metabolic syndrome. For more on metabolic syndrome, see:

http://www.mayoclinic.org/diseases-conditions/metabolic-syndrome/basics/definition/con-20027243

Pumpkinseeds

My HS affects the armpits, groin and bottom, with the odd one on my inner thighs. Sometimes I'll come across an online article that describes them on peoples heads, back of neck and abdomen. I'm just curious to know if anyone on this forum has had them in those areas.

lockman

Pumpkinseeds wrote: »

My HS affects the armpits, groin and bottom, with the odd one on my inner thighs. Sometimes I'll come across an online article that describes them on peoples heads, back of neck and abdomen. I'm just curious to know if anyone on this forum has had them in those areas.

When at my worst a few years back, I used to get lesions behind the ears.

Pumpkinseeds

lockman wrote: »

When at my worst a few years back, I used to get lesions behind the ears.

It's frustrating that the information about HS is often so inaccurate. For so many years the info was that it only affected the armpits, groin, perineum, but now it's obvious that it affects so many other areas too. I remember when they said it only kicked in in adolescence and yet I find articles where it affects very young children. Likewise they said it got a lot better after menopause, yet I'm in early menopause and mine is more active than ever.

lockman

Pumpkinseeds wrote: »

It's frustrating that the information about HS is often so inaccurate. For so many years the info was that it only affected the armpits, groin, perineum, but now it's obvious that it affects so many other areas too. I remember when they said it only kicked in in adolescence and yet I find articles where it affects very young children. Likewise they said it got a lot better after menopause, yet I'm in early menopause and mine is more active than ever.

I too find that a very frustrating aspect of living with HS. What works in some doesn't work in others and so on. It really does test your patience. I find the not knowing what is going to happen very frustrating. I used to let the condition dominate my life (didn't have much of a choice) but now I am trying to regain some control by for e.g. planning holidays and so on, and saying to hell with the HS.

lockman

Pumpkinseeds wrote: »

It's frustrating that the information about HS is often so inaccurate. For so many years the info was that it only affected the armpits, groin, perineum, but now it's obvious that it affects so many other areas too. I remember when they said it only kicked in in adolescence and yet I find articles where it affects very young children. .....

See link for a paper describing a case you alluded to i.e. a case of HS in a young girl. There is no abstract available unfortunately.

http://www.ncbi.nlm.nih.gov/pubmed/25784224

Pumpkinseeds

Well, another week and a new HS site. I haven't had it come up anywhere other than armpits, groin and perineal areas in decades, but it's sprung up elsewhere. It could just be coincidence but I think that in my case while the Infliximab infusions didn't improve the condition, stopping it made things a lot more active.

Coming off it I had really bad pains in the bones of both hands and areas that had been active but relatively calm, became very active again. I'd be curious to know if anyone had the same experience with the Infliximab.

lockman

Pumpkinseeds wrote: »

Well, another week and a new HS site. I haven't had it come up anywhere other than armpits, groin and perineal areas in decades, but it's sprung up elsewhere. It could just be coincidence but I think that in my case while the Infliximab infusions didn't improve the condition, stopping it made things a lot more active.

Sorry to hear that- it is always a disapointment when a new one rears its ugly head, and especially so in a new area.

Pumpkinseeds wrote: »

Coming off it I had really bad pains in the bones of both hands and areas that had been active but relatively calm, became very active again. I'd be curious to know if anyone had the same experience with the Infliximab.

The stopped my infliximab for a bit a few months back to see how I'd get on.. Almost immediately some old dormant lesions reawakened, and a nasty new one appeared. I didn't experience any pains though.

lockman

lockman wrote: »

See link for a paper describing a case you alluded to i.e. a case of HS in a young girl. There is no abstract available unfortunately.

http://www.ncbi.nlm.nih.gov/pubmed/25784224

Just to add that this paper is now freely accessible to all.

It is particularly upsetting reading about HS in someone so young (an 8 year old) and they look at ~ 8 other previous reports of HS in children.

Trisha_H

I've got a question! Did anyone here struggle to find or hold down a job because of HS?

Trisha_H

I've got a question. Did anyone here struggle to find or hold down a job because of HS?

lockman

Trisha_H wrote: »

I've got a question. Did anyone here struggle to find or hold down a job because of HS?

Hi Trisha,

Yes to your question.

I believe my HS was the cause of me losing a good job I had before.

It has stopped me from being able to work in the past: I was on illness benefit for ~2 years due to the HS (and it was my GP who suggested this).

It also restricts the types of work I can do.

Pumpkinseeds

Hi Trisha. I lost a job because of HS. I just missed so much work because I was having a lot of time off for surgeries. I haven't worked for quite some time now, but I haven't been looking because I know that with my HS being so severe, I wouldn't be able to work full-time and if I lost my benefits I would probably never get them back. A lot of it comes down to how supportive an employer is and how severely your HS restricts you. I've had Epilepsy for almost 30 years and I never mentioned it to employers as I knew I'd never get a job if I did.

What I'm saying is that if I were looking for work now and the HS wasn't too severe, I wouldn't mention it to potential employers.