Recently Diagnosed with Hidradenitis Suppurativa

[Victoriahere]

Hi all! Was wondering if anyone else who has chronic kidney disease has been diagnosed with this? It’s truly awful and something else that never goes away and is worrisome. I’m in stage 3B currently and things seem to be going bad quickly here lately. This is another battle for me that will have to be dealt with for the rest of my life. If you’ve been diagnosed with this what has helped to keep it under control? I have to use an antibacterial soap for my armpits twice daily with an antibiotic cream. So far it’s done nothing and the problem still exists. Ugh

[WardijaWardija]

Hi. Yes, I have this too, specific to the groin area . . Urghh As a 20 year old it started in my armpits and groin, but over time, it ceased in the arm-pit area. I'm now 60

So I've had it for years and years, well before my CKD diagnosis.

It never really goes 100% but mine is kept in check with a long-term maintenance dose of antibiotics, Minocycline 50mgs

2 tablets a day.

Would say I've been on this regime for the last 15 years or so.

As a diabetic, it definitely flares up when/if my glucose is high.

I hope you find a way to manage it.

[Victoriahere in reply to WardijaWardija]

Oh goodness, you’ve been dealing with this most of your adult life. That’s rough and I’m so sorry, but I do appreciate you replying to my post and giving me information that may help me out some. It has been a frustrating road so far and if I can just get to a point where it’s manageable or under control would be a big relief for me. I know of no one in my family that has or have this. I’m a little lost, but hearing others that too are battling with this really helps a lot. I don’t feel so alone with this now. Thanks 😊 WardijaWardija

[WardijaWardija in reply to Victoriahere]

You are welcome, only wish I had a magic wand to wave over all of us . . Life can be so challenging and so damn unfair, but on we go . . till death do us part 😉 it would seem. I really hope you can get your situation under control.

I know I wouldnt have managed this without the anti-biotics. If for any reason I miss taking my AB, by the 3rd day, the boils/cysts are already forming under the skin . . So I know without doubt, that there is a direct correlation, in keeping the HS at bay..

Creams, lotions, washes, all first line defences, never made a jot of difference to me. I gave up with those years ago and don't know of anyone who they ever made a difference to.

Wishing you all the best 🙏🙏

[cateblanchett]

Hi Victoriahere

Sorry to hear you have HS. I’ve had it for 45 years now. So far there is no treatment which cures it. There is a lot of research being done in Belgium at the Erasme University. Hopefully there will be a breakthrough soon. One tip I would give you is to avoid any friction on the effected area. This can cause a boil to develop.

I never had any luck with antibacterial soaps either. Like WardijaWardija I found taking antibiotics has helped keep it in check.

I’m at stage 3b but don’t think it has to do with my CKD which only started about 4 years ago.

Yes, another thing to deal with!

Good luck and best wishes from one HS sufferer to another!

[WardijaWardija in reply to cateblanchett]

Bless you, it's a horrible condition to have, and no-one in my family shows any trace of it, so I don't know - down to over active sweat glands according to a couple of the lucky GP's who had a private showing !Can remember many a hot summer, laying knickerless, on the bed, legs akimbo with a fan on full speed, in an attempt to calm it down..

"Getting some fresh air" took on a whole new meaning for me 🤣.

Take care xx

[cateblanchett in reply to WardijaWardija]

That picture of you made me laugh because I used to do a similar thing!! Not really a laughing matter. It is awful, isn’t it ? The tragedy is that most doctors have no idea about this disease. Have you been told it was due to lack of hygiene? Have you had operations that made no difference except to take a chunk out of your body ? Have you had fistulas develop suddenly?

Here is a link to download a brochure about HS. It was originally written by a Danish organisation. It is now translated into English and other languages. It looks at what HS really is, where it might come from and possible treatments so far (not cures).

Hope you continue to have some control using antibiotics.

Hot weather coming soon - get the fans out! xxx

[WardijaWardija in reply to cateblanchett]

Yes, the fans are on standby . . In answer to your questions, it's a no, to all of them.

Only things I was ever told, was that a poor diet didnt help - chocolate, highly processed foods, high fat snacks etc. The "naughty" things were best avoided and, keeping ones weight in check, as chaffing of the inner thighs are not an experience of pleasure.

Oh if it were only that easy !!

Good hydration is important.

Now looking back, I think I would say, that indeed the above "naughty" items, dont do much for anybody's skin conditions, but alone, I dont consider them as being the sole causal factor.

As a female, I believe that hormones are involved.

I do believe that stress plays a part and can really excaberate the condition.

Then we have the itch, scratch, cycle . .

As a chronic diabetic, any cuts or lesions to my skin, takes forever to heal and the duration of the healing process is definitely lengthened if the above foods are eaten in excess, which lends weight to the argument that they should be generally best be avoided in the main and eaten as an occasional treat or indulgence.

Wish I could always practice what I preach . .but I'm only human and sometimes when I get into my "life's too short" mindset, the chocolate generally wins the battle of the wills.

But we do what we can.

Take care 🙏🙏

[cateblanchett in reply to WardijaWardija]

Hello WW,

Sorry I haven’t been in touch sooner but I had a major flare of HS, the worst I’ve ever had. I tried at first to take care of it myself, soaking, ointment etc but nothing worked, so went to my dermatologist. Long story..short had a load of fistulas (a new thing for me) that had to be cleaned out and I had to take antibiotics. Now pain free at last. All the things you talk about in your post, e.g. diet, stress, hormones I have never had any proof of direct associations with HS, so don’t know as usual what brought this on (maybe global warming!) .. Am trying something new now (recommended by the dermatologist). Every day I take 1 gram of zinc. I’ll do this for 2 months. Hoping it works to eliminate nodules? Will let you know. Hope you are well.

[WardijaWardija in reply to cateblanchett]

Hi.My second reply of the morning to you - I must of missed your message from yesterday, my apologies.

OMG our HS is beyond a bloody nuisance (excuse the pun, although entirely descriptive).

I'm sorry you've been so poorly with it. Fingers crossed the Zinc will make some real difference.

I've recently had a flare-up, all it seemed to take was a couple of days of missed medication, Minocycline (I ran out) and a bout of poor choice eating and bam, the lumps started rising up.

Settling down now to an uneasy truce - it's a delicate balance.

Yes, do let me know how the Zinc works out.

How we suffer 😉 its so unfair.

Take care.

🌷🌷🌷

[Victoriahere in reply to cateblanchett]

Hello cateblanchett! 45 years is a long time and I’m sure frustrating for sure. Good to hear of the on going research in Belgium. Maybe there’s some hope with this for the future. Oh yes indeed I recently learned friction is not your friend at all with this. Ouch! I was thinking it may have been due to my on going kidney failure, but maybe not. Who knows. I was wondering if stress can play a role with this. Well, I’m learning more and more about it and it truly does help to hear from others like yourself that have been dealing with this already for years. Just thinking of that alone can help me to deal with it. Thanks 😊

[cateblanchett in reply to Victoriahere]

Hi Victoriahere,

I can only answer from my own experience. Stress has caused me to have flares in the past but my kidney disease is a relatively recent development so don’t believe there is a connection there..

It’s surprising just how many people suffer from HS. Your posting here has opened the floodgates. You’re right that knowing that others have it is a big support.

I tried to post a link to a brochure which talks about all the aspects of HS and where the research is up to now. Unfortunately, the link was refused, so cannot share here. Perhaps it can be found on google.

Thanks for the follow 😊.Will post any news I get from Erasme University (hopefully soon!).

[metalminded]

Hello Victoriahere

Yes, I have HS too. Mine didn’t start until after I had my kidney transplant. I never had any issues prior.

It was in my arm pits and groin. I saw several dermatologists and never found any relief besides going to her for steroid injections after squeezing the gunk out. It was very painful for me.

Then all of a sudden it went into remission.

My care team hadn’t had any patients that had HS so I didn’t feel like I got much help, from any doctor for that matter.

The only difference between me and everyone on this post is that I’m male, though I don’t think that has any relevance.

[Victoriahere in reply to metalminded]

Hello metalminded! Thanks for your reply to my question. Congratulations on the transplant!! So wonderful to hear you are in remission and I hope it stays that way for you. It is a painful and frustrating situation to deal with. Last year I had to have a cyst lanced that formed under my armpit. It grew pretty big fast and it was very painful even though I seem to have a pretty high tolerance with pain. So far no more big ones like that as most are small right now. But, where the cyst was lanced another formed right next to it again this year right around the same time as last year. Ugh 😩 So I’m having a battle with that one again.

[metalminded in reply to Victoriahere]

I know how that feels! I had so many form in my armpits and so often.

This has got to be one of the most miserable conditions, not life threatening but terrible to deal with!!

I feel for everyone that is going through it and hope the medical community will find answers and a permanent solution to rid us of it!!

[WinJ3]

Sorry to hear about your HS. I was diagnosed with this disease from hell😩about eight years ago. Mine was in the groin area. I worked with my dermatologist trying various steroids, creams, cortisone shots and even dapsone creams and pills. Doxepin and Benadryl did help with itching and sleep.

Colchicine .5mg tablets was what kept mine controlled. I do get flare ups occasionally, for that I use Neosporin pain relief “cream”.

Hope this is helpful,

🙏🏻

[Victoriahere in reply to WinJ3]

Hi, Winj3! Thanks for your reply, and you got that right it is the disease from hell for sure!!! Ah-did not even think of taking Benadryl for the itching. Thanks for that tip. Right now my doctor has me using Clindamycin Phosphate Gel and I’ve just about went through the whole tube with no change as of yet. But, I’ll keep moving forward and do what I need to do on a daily basis and maybe eventually I can get it more under control. Fingers 🤞

[WinJ3 in reply to Victoriahere]

I sure pray that it helps, sometimes it’s trial and error to see if something helps 🙏🏻

[WardijaWardija]

Hi Victoria here

We spoke about this HS issue, about a month ago. I hope you are well (as is possible, in our situations).

I'm currently having a major flare-up of the gross HS, having been fairly clear for a while.

I missed my Minocycline for just 2 days as I ran out, and here we are, but I can't believe the negative reaction would show up so quickly. .

Anyway, I've just had a bit of an 'ah ha' moment, don't know why I hadn't thought of this before . . . But thought I'd share it.

My lovely CKD has bestowed me with many extras in my life, that were never asked for, the latest being incontinent of urine, not an urge for trickle, but a flooding whoosh with no prior warning.

This has led me into a whole new world of incontinence sanitary, wear.

I refuse to wear a "nappy" so I have settled on using press-on maternity pads, bigger and thicker than a sanitary towel, but still relatively discrete.

Whilst sorting out my, previous purchases, I came across a pack of

"TENA" DISCREET MAXI NIGHT PADS, and although I hadn't tried them yet they were very soft and "paddy", I don't know how else to describe them.

Then lightning struck - they would be perfect (cut to size) to protect that God awful, painful and sometimes leaking, lump we suffer (for days on end) under the skin.

My current manifestations are in my groin, ouch 😱 and in the past I would have used large plasters or dressings that were thin and never stayed on.

Using the Tena pads, is way more comfy and the peel n stick strip, adheres to my underwear. It really protects that sensitive area. Just a shame it took me so long to come across this hack 🙏

Protection