New, sad and angry

Welcome Greetings and Introductions
21

Oh gosh, Sybil… I have so many pennies dropping here! I have also been investigated for worms, and scabies, and one armpit once got so bad it developed an abscess that needed to be lanced. I was told off for my slack shaving habits too! I have had a LOT of skin problems, now I think of it, and though they have never been diagnosed as psoriasis, each other thing some doctor suspected has always been ruled out. I stopped going to the doctor with skin things, mostly, because they could never diagnose, and prescribed treatments that didn’t work (at all, or no better than Sudocreme or tea tree oil), and some doctors cast aspersions on my hygiene and that wasn’t nice to listen to…



Sybil said:

Some of our experiences would be funny if they weren’t so sad. I had a really fun time with my inverse psoriasis back in the day. There was the consultant who was determined that I must have worms and did his bestest to find them, that was nice, and also the GP who said that my armpit psoriasis was linked to the fact that we no longer live in caves. Eh? What? Beam me up. With a look of utter disgust on her face she explained that it was due to not shaving, like a cave woman. Had I shaved those armpits I wouldn’t have had any skin left.

flow said:

I’ve been reading up about psoriasis, and it seems likely from what I’ve read that I have had occasional episodes of what is called ‘inverse psoriasis’ for 30 years. The first episode was in my groin, and originally diagnosed as herpes, but lab tests later ruled that out and I never got a diagnosis. So I saw GU doctors not a dermatologist, and when I subsequently had similar sores in my (what’s the official name for bum crack?!) too, and in the fold under my breasts, I didn’t even think to connect them. But they were generally similar to that belly button rash…

22

Skin issues ..... I've had and heard it all too :-(. It took (a not very good) rheumatologist to actually identify psoriasis. I'm glad the two plaques overlying my knees that day were as 'text book' psoriatic plaques as it's possible to get because from there he couldn't have got the PsA diagnosis wrong. Shame on the two senior consultant dermatologists that had previously examined every lesion, crack and crevice for every parasite, fungus, allergy and general dermatitis known to man!

23

Inverse psoriasis is a topic that we only come across here and there but seems like it gets little attention. Some of us are extremely shy about discussions like this but could really use some straight out in the open ifo.

24

Well it's just the kind you get in any folds of skin: armpits, groin, between the buttocks, under the breasts .... and I think behind the knees counts too. As I understand it, it tends to be bright red and decidedly un-scaly mainly due to the locations in moist, warm places that don't allow the dry, silvery plaques to develop.

I had inverse psoriasis in my armpits day in, day out for 10 years or so plus occasional outbreaks in my groin etc., then it disappeared for about another 23 years! Last year, when psoriasis made a full-on return, I used a less potent steroid cream on the inverse stuff because the skin tends to be more sensitive. I was told that it can be harder to treat than that on the legs etc. because obviously topical steroids just don't work so well on moist skin. But mine cleared up rather quicker than the other stuff. And I've never found inverse psoriasis especially itchy though I think most(?) people do.

Rachael said:

Inverse psoriasis is a topic that we only come across here and there but seems like it gets little attention. Some of us are extremely shy about discussions like this but could really use some straight out in the open ifo.
25

Rachael, I agree. I'm happy to share my experience, because I didn't know this thing existed until 48 hours ago, and if I had read a post like the one I'm about to write, then maybe I'd've been diagnosed a decade or three ago...

BUT PEOPLE OF A SENSITIVE NATURE, LOOK AWAY NOW!

Of course, I don't know for sure mine is inverse psoriasis, because I haven't seen a specialist yet, but now I've read up on it, I really think it is. For me it has been like this...

It has come mostly in folds, where flesh touches flesh: in my groin close to my labia, in the crack between my buttocks, in the fold under my breast, in my belly-button, between my toes, and also I think in my armpits and inside my ear. It doesn't come randomly - there are some 'favourite spots' where it seems to come over and over again. Each time, it has been small, very focused patches - maximum size about 3-4cm/1.5 inches, minimum size like a mouth ulcer. It has started each time as an itch, but it has not been as itchy as other rashes. In the places where there is most friction and maybe moisture, the patches have developed quickly onto something that really hurts - a really sharp stinging pain. I think this may be because the skin splits. In my groin, they have really, REALLY hurt, to the point where I couldn't put pants on and had to stay in bed; they've hurt so much they have made me cry. They have been in places where they are often not easy to see, but when I have been able to look, they have been bright red. The one under my breast has been particularly shiny. They haven't been flaky in the places that are moist, but they have been where it is relatively dry (toes, belly button, ear). In my groin and between my buttocks, it reminds me of angry nappy rash. I get other sorts of rashes too, especially on the small of my back, my scalp, my eyebrows and my palms, but I'm not sure whether they are psoriatic.

I don't use soap when the rash is bad, and I never use creams or perfumes or any other chemicals, because these sting or seem to make it worse. Topical steroids haven't worked especially well. Anti-fungal creams haven't worked. Sudacrem has often worked. Dilute tea tree oil also seems to work well - if I start using it promptly, the rash is usually gone in 48 hours.

If anyone else wants to share their experience of inverse psoriasis here, I'd be interested to hear it.

26

Me, Flow! Me! But I have to finish making and eating dinner first.
I’d put my money on that being inverse psoriasis.

27

Oh, dear, god, inverse is horrid. I’ve had “Ring of Fire” stuck in my head for weeks now as my skin feels like one giant burny, ow. I’m hopeful that my new bio, simponi will help. I get to start on Wednesday.



flow said:

Rachael, I agree. I’m happy to share my experience, because I didn’t know this thing existed until 48 hours ago, and if I had read a post like the one I’m about to write, then maybe I’d’ve been diagnosed a decade or three ago…

BUT PEOPLE OF A SENSITIVE NATURE, LOOK AWAY NOW!

Of course, I don’t know for sure mine is inverse psoriasis, because I haven’t seen a specialist yet, but now I’ve read up on it, I really think it is. For me it has been like this…

It has come mostly in folds, where flesh touches flesh: in my groin close to my labia, in the crack between my buttocks, in the fold under my breast, in my belly-button, between my toes, and also I think in my armpits and inside my ear. It doesn’t come randomly - there are some ‘favourite spots’ where it seems to come over and over again. Each time, it has been small, very focused patches - maximum size about 3-4cm/1.5 inches, minimum size like a mouth ulcer. It has started each time as an itch, but it has not been as itchy as other rashes. In the places where there is most friction and maybe moisture, the patches have developed quickly onto something that really hurts - a really sharp stinging pain. I think this may be because the skin splits. In my groin, they have really, REALLY hurt, to the point where I couldn’t put pants on and had to stay in bed; they’ve hurt so much they have made me cry. They have been in places where they are often not easy to see, but when I have been able to look, they have been bright red. The one under my breast has been particularly shiny. They haven’t been flaky in the places that are moist, but they have been where it is relatively dry (toes, belly button, ear). In my groin and between my buttocks, it reminds me of angry nappy rash. I get other sorts of rashes too, especially on the small of my back, my scalp, my eyebrows and my palms, but I’m not sure whether they are psoriatic.

I don’t use soap when the rash is bad, and I never use creams or perfumes or any other chemicals, because these sting or seem to make it worse. Topical steroids haven’t worked especially well. Anti-fungal creams haven’t worked. Sudacrem has often worked. Dilute tea tree oil also seems to work well - if I start using it promptly, the rash is usually gone in 48 hours.

If anyone else wants to share their experience of inverse psoriasis here, I’d be interested to hear it.

28

Humira was a life saver for my skin. My plaques completely cleared in under a month and I had results, including relief from pain and itching within 7 days. I hate that it stopped working for me long ago. It was the very best drug for my psoriasis.



flow said:

Rachael, I agree. I’m happy to share my experience, because I didn’t know this thing existed until 48 hours ago, and if I had read a post like the one I’m about to write, then maybe I’d’ve been diagnosed a decade or three ago…

BUT PEOPLE OF A SENSITIVE NATURE, LOOK AWAY NOW!

Of course, I don’t know for sure mine is inverse psoriasis, because I haven’t seen a specialist yet, but now I’ve read up on it, I really think it is. For me it has been like this…

It has come mostly in folds, where flesh touches flesh: in my groin close to my labia, in the crack between my buttocks, in the fold under my breast, in my belly-button, between my toes, and also I think in my armpits and inside my ear. It doesn’t come randomly - there are some ‘favourite spots’ where it seems to come over and over again. Each time, it has been small, very focused patches - maximum size about 3-4cm/1.5 inches, minimum size like a mouth ulcer. It has started each time as an itch, but it has not been as itchy as other rashes. In the places where there is most friction and maybe moisture, the patches have developed quickly onto something that really hurts - a really sharp stinging pain. I think this may be because the skin splits. In my groin, they have really, REALLY hurt, to the point where I couldn’t put pants on and had to stay in bed; they’ve hurt so much they have made me cry. They have been in places where they are often not easy to see, but when I have been able to look, they have been bright red. The one under my breast has been particularly shiny. They haven’t been flaky in the places that are moist, but they have been where it is relatively dry (toes, belly button, ear). In my groin and between my buttocks, it reminds me of angry nappy rash. I get other sorts of rashes too, especially on the small of my back, my scalp, my eyebrows and my palms, but I’m not sure whether they are psoriatic.

I don’t use soap when the rash is bad, and I never use creams or perfumes or any other chemicals, because these sting or seem to make it worse. Topical steroids haven’t worked especially well. Anti-fungal creams haven’t worked. Sudacrem has often worked. Dilute tea tree oil also seems to work well - if I start using it promptly, the rash is usually gone in 48 hours.

If anyone else wants to share their experience of inverse psoriasis here, I’d be interested to hear it.

29

Because I am so recently diagnosed, and until 3 days ago the rheumy thought I had mild RA or nothing at all, I am only on NSAIDs and Hydroxychloroquine - which seems to be making my rashes flare up. I'm due to start MTX soon, which is supposed to be much better for your skin. I'm looking forward to that!

GrumpyCat said:

Humira was a life saver for my skin. My plaques completely cleared in under a month and I had results, including relief from pain and itching within 7 days. I hate that it stopped working for me long ago. It was the very best drug for my psoriasis.

flow said:

Rachael, I agree. I'm happy to share my experience, because I didn't know this thing existed until 48 hours ago, and if I had read a post like the one I'm about to write, then maybe I'd've been diagnosed a decade or three ago...

BUT PEOPLE OF A SENSITIVE NATURE, LOOK AWAY NOW!

Of course, I don't know for sure mine is inverse psoriasis, because I haven't seen a specialist yet, but now I've read up on it, I really think it is. For me it has been like this...

It has come mostly in folds, where flesh touches flesh: in my groin close to my labia, in the crack between my buttocks, in the fold under my breast, in my belly-button, between my toes, and also I think in my armpits and inside my ear. It doesn't come randomly - there are some 'favourite spots' where it seems to come over and over again. Each time, it has been small, very focused patches - maximum size about 3-4cm/1.5 inches, minimum size like a mouth ulcer. It has started each time as an itch, but it has not been as itchy as other rashes. In the places where there is most friction and maybe moisture, the patches have developed quickly onto something that really hurts - a really sharp stinging pain. I think this may be because the skin splits. In my groin, they have really, REALLY hurt, to the point where I couldn't put pants on and had to stay in bed; they've hurt so much they have made me cry. They have been in places where they are often not easy to see, but when I have been able to look, they have been bright red. The one under my breast has been particularly shiny. They haven't been flaky in the places that are moist, but they have been where it is relatively dry (toes, belly button, ear). In my groin and between my buttocks, it reminds me of angry nappy rash. I get other sorts of rashes too, especially on the small of my back, my scalp, my eyebrows and my palms, but I'm not sure whether they are psoriatic.

I don't use soap when the rash is bad, and I never use creams or perfumes or any other chemicals, because these sting or seem to make it worse. Topical steroids haven't worked especially well. Anti-fungal creams haven't worked. Sudacrem has often worked. Dilute tea tree oil also seems to work well - if I start using it promptly, the rash is usually gone in 48 hours.

If anyone else wants to share their experience of inverse psoriasis here, I'd be interested to hear it.

30

Hahahaha, that is very funny GrumpyCat! I shall go to bed humming that now, and it'll make me smile every time I have a flare from now on! :D

GrumpyCat said:

Oh, dear, god, inverse is horrid. I've had "Ring of Fire" stuck in my head for weeks now as my skin feels like one giant burny, ow. I'm hopeful that my new bio, simponi will help. I get to start on Wednesday.


31


Good grief Seenie, you too?! Are we twins, separated at birth?! ;)
Very interested to hear your experience, though I'm off to bed now and up for work in the morning, so it may be tomorrow night before I read it...

Seenie said:

Me, Flow! Me! But I have to finish making and eating dinner first.
I'd put my money on that being inverse psoriasis.
32

You’re in the UK? Seenie, do they have the dermatology route there for faster meds?

33

My mother had the worst case of what I now know is inverse psoriasis under both breasts I have ever seen. Never fully got rid of it, no matter what she tried.

I have it in my inguinal area--worse on the left than on the right. The derm prescribed a compounded cream: desitin, triamcinolone and nystatin--which helps immensely. I had a terrible case during law school (think it was having hose on 16 hours a day plus stress plus eating whenever and wherever I could. I haven't had it as badly since I became medicated for the PsA but every now and again.....

It starts the same way: I'll feel...something during the day, then when I'm in the shower, I aim the water in that area and want to scream RAW! RAW! RAW! RAW! RAW! Thank goodness, one slather of compound cream does the trick.

34

Don't know, Grumpy, in The Great White North. But Sybil or Jules will know. It is a nifty way to get on the fast track to good treatment.

GrumpyCat said:

You're in the UK? Seenie, do they have the dermatology route there for faster meds?
35

Crap, my American is showing. I told you, brain is shot. I know you’re up there, I was just experiencing the same weather! Anyway, I’d in the US, we can sometimes get around delays in getting meds by going to a dermatologist. There are different standards for starting biologic meds for psoriasis and psoriatic arthritis. Maybe ask someone on the Cuppa group of they’ve had any success with that? Inverse can get pretty severe and cause other not fun stuff, so maybe you could get more effective meds sooner?

36

AVERT YOUR EYES! What follows is long, and not pretty. (Thanks, Flow, for opening the flood gates. Is that why you're called Flow?)

Way back in the eighties I had a GP whom I loved, and who was a good friend as well. Finally, I couldn't stand "it" any more: I asked her to look at my anus, which itched, bled and had sometimes even had skin peeling off it. Doc said that it wasn't hemorrhoids, although I did have those, but she assured me that if we were going to compete in the hemorrhoid class, she was going to win 'cuz hers were bigger. (How can you not love a GP like that?) Anyway, she had no clue about the skin thing. She commented that it would take months to get to see a dermatologist, so she said she was referring me to the General Surgeon who was, in her words, "the smartest doc in town, and the man who knows everything". This doc was not a friend, but I had taught his kids, and we moved in some of the same circles. He is a lovely, gentle and kind person, and an excellent surgeon, but I really really didn't want to go there. The day I went, he asked permission for a student to examine me as well. Aaaahhhuuuummmm... what was I going to say? OK. There followed serial peering, prodding, wiping, a magnifying glass at one point and then a conference ... excuse the expression, but shit, it was humiliating. Then the good doc delivered his verdict: it was a hygiene problem. O.M.G. Advice was to keep "the area" very clean and dry. Did I mention humiliating?

So I kept "the area" clean and dry, and I discovered that cortisone cream helped "the area" when it got bad. The problem recurred regularly over the following years, and I did my best to ignore it. I certainly wasn't going to ask about THAT problem again.

Fast forward twenty years, lots of misery and mysteries, and two knee replacements later, they find erosions all over my feet, and the rheum diagnoses PsA. She sends me to a dermatologist for confirmation of Psoriasis, but she felt confident that the nail pitting was the sign that, um, nailed it.

I go to the dermatologist, who a friend had warned me was crude and rude. Did I care? I just wanted her to look at my nails and say yay or nay. But of course it's not that simple. She starts with history. Did I have any relatives who had been diagnosed with psoriasis? I say no, but that my Mom (who had died the year before) had developed crusty dandruff-like "stuff" on her scalp, and she had shiny, flaky eczema in her ears. THAT'S PSORIASIS she yelled. WHO SAID IT WAS ECZEMA? I said her GP. She gets visibly wound up, and grimaces. Then she starts on me.

"Let's see your elbows...yes, that's psoriasis." (A slightly rough patch on my one elbow.)

"Do you have any skin complaints?" Yes, I said, my skin is desperately dry and itchy. Her eyes get big and she starts puffing and yelling again "WELL THAT'S PSORIASIS. OB-VI-OUS-LY!"

What about your toenails? I say that I have fungus. She looks. She blows her stack, "AND WHO SAID THAT WAS FUNGUS?????" "My GP" I say making myself as small as possible. And then she goes on the rampage. "I AM SICK AND TIRED OF THESE FAMILY DOCTORS WHO KNOW NOTHING ABOUT DERMATOLOGY MISDIAGNOSING PSORIASIS. PSORIASIS IS A SERIOUS CONDITION WITH SERIOUS CONSEQUENCES. TOENAIL FUNGUS?!!? LOOK AT YOU! LOOK AT YOU! Me, I was looking for the exit...

Then, then, the best line of all. "So," she demands, "How is the skin around your butt hole?" I'm sure my jaw dropped. "Well...um...I've had peeling and itching and ..." She cut me off. "AND WHAT DO YOU SUPPOSE THAT MIGHT BE????" she demanded, staring at me as if I was the one guilty of a mis-diagnosis.

Anyway, we get to the end. TG for that. And, in the course of discussing the diagnosis, I comment timidly that "and you think that my Mother probably had psoriasis as well..." At that point she throws her hands in the air and launches "I NEVER SAID ANYTHING OF THE SORT!!!" By this time I was close to tears, but she was on an unstoppable roll. "I SAID YOUR MOTHER HAD PSORIASIS. SHINY FLAKY ITCHY RASH IN THE EARS IS ALWAYS PSORIASIS, DO. YOU. HEAR. ME, ALWAYS!"

I was never so glad to get out of a doctor's office in my life.

1 Like
37

Seenie, well told! The dermy was a little mouthy, but at least she knew her stuff!

This discussion is the best. I'm so glad we can talk to each other about not only the most painful, but the most embarrassing psoriasis we have. I never knew what that was and was too shy to bring it up to a doctor. I just remember the pain when the skin would tear open in my crack. Yes, small amounts of betamethasone worked miracles, and luckily I only got psoriasis there about e/o month or less. It was sooooooo painful to wash, but geez, that's the place that can't be ignored, right?

Enough about that..... I haven't had it since I've been on Enbrel--yay, Enbrel! Do you guys get the little cuts on your fingertips, though????? Those hurt like h.e.double hockey sticks, too. Sheer torture. I had one last week and nothing seems to heal them except time. Bandages soften the pain if they're bumped, but if anyone can share a treatment that clears them up fast, I'd appreciate hearing it!

38

Just stuck my head for a quick look before work. Thanks everyone, for your posts and humour - I’ll respond properly tonight. And I’m going to try very hard not to shout “How is the skin around your butt hole?” at anyone today!!

39

I'm in the UK Grumpy. As is Jules.

This does seem to be such a good bet for accessing biologic therapy in the US when rheumys are twiddling their thumbs.

Thing is in the UK the same body, NICE, writes the guidelines for access to drugs across the NHS. And I haven't seen or heard anything that suggests that they make the dermatology route to biologics any quicker or easier per se.

The most recent guidance (2012) recommends biologics for severe, persistent psoriasis if topicals and non-biologic systemic drugs haven't helped sufficiently. The way I see it, though I'm interested to hear what Jules thinks, is that if you've got severe psoriasis and your derm favours aggressive therapy then you are likely to get biologics regardless of what is happening with your PsA. So at least in that situation there is another route, if not necessarily a quicker one.

However, the NICE guidelines for dermatologists treating psoriasis do say this:

"Assessment and referral for psoriatic arthritis

  • As soon as psoriatic arthritis is suspected, refer the person to a rheumatologist for assessment and advice about planning their care."

  • I don't know if that happens often enough, but it's there in black and white. So if anyone suspects they have PsA but are having trouble getting GP to refer them to a rheumy, that is another possible route.
  • (These random bullet points are really getting on my wick)


GrumpyCat said:

You're in the UK? Seenie, do they have the dermatology route there for faster meds?
40

Sybil you're spot on, I understand the dermatology route is as tough if not tougher than the rheumatology route.

I can only think of one person I know who managed to get herself on Humira via her dermy and that was not before she had tried every topical steroid, bath soak, emoilient, methotrexate and UV therapy and her skin still made her look like she had been 'skinned'. Thankfully Humira it helps her joints as well ... she'd had the fibro blow off on her joint pain for years but it's as clear as day she's got PsA. In fact when I got my diagnosis so quickly she was distraught after her own struggle ... she's now moved out of the area and has a much better team looking after her now.

My thoughts are that Flow goes armed with the NICE guidelines for the treatment of PsA (and everything else she can lay her hands on) as well as checking out the article in Cuppa House "How to be a pushy patient" and insists upon an immediate and urgent start on treatment. My gut feeling is she will be escalated pretty quickly if she gets her treatment transferred into her closest centre of excellence for PsA. The article I mention also covers a patients rights under the NHS Constitution to request/access care of specialist consultants. I had to invoke this to get my care transferred to a PsA specialist ... it's not difficult. Any questions just shout!