What might I expect other than the unexpected?

General
1

I have what might well seem like a silly question to some of you with more experience of this problem, it's not the first and I doubt it'll be the last.

About 33 years ago I got inverse psoriasis in my armpits plus some P in groin area and on scalp. It was a bit annoying but I suppose I got used to it because the armpit P just never went, it would sometimes heal up overnight but if it did it came back the next day. Then after about 10 or so years it just up and went, totally. After all that time it left no scars.

Just before PsA diagnosis in 2012 I got a small patch of P on my elbow & some sunshine sorted that. Now it's back with what to me seems like a vengeance. Goodness only knows I've seen pics of much worse but I have quite a few itchy, sore patches on my feet, legs, armpits & groin (pretty angry there), scalp, ears, trunk, arms & hands. I'm off to Dermatology on Tuesday.

I don't know much about Psoriasis. Rheumy nurse is going to run it by my consultant who is on his hols just now, but thought it could be an odd side effect of Humira. She also thought it could explain my increased fatigue of late. Really? Does Psoriasis cause fatigue? So many people have P, are they all as knackered as me? That doesn't bear thinking about.

What happens with your psoriasis? Does it come and go? Or does it hang around like mine used to?

2

Now there is a bunch of interesting questions!

My psoriasis history is very similar to yours. The first I can really remember was also flexural, starting in my late teens, armpits, inner elbows and back of the knees. Would not go away and I remember it eventually took a two week holiday in Cornwall exposing my red raw skin to the sun every day to beat it. Over the next few years it would sometimes flare a bit in those spots and then go away again without much ado. Hasn't reappeared there since the mid 1980's.

Then I think I got lucky for a while and don't remember much at all (except the peri-anal stuff which rarely went away) before 2000. This was followed by a random patch on one knee and one foot, they lingered, I did nothing and eventually they too went away .... but I'm talking months and months and months.

But it was when it struck my hands in around 2003/4'ish that the trouble really began and I've maybe only had a few short years since, somewhere around the middle, where my palms and fingers haven't been affected. I also remember a patch on the back of my neck and incredibly itchy ears. It was two typical plaques on my knees from around 2010 that secured my PsA diagnosis in 2012. Since then it was only while on leflunomide that I had any improvement in my skin. Interestingly both knee plaques have scarred my knees .... well, certainly the skin is a different colour.

Last year it started to flare up again, soles of feet, hands, natal cleft, belly button, in and behind ears, outside of elbows, and inverse in my groin, between and under my breasts. With the exception of my feet I can keep it reasonably controlled with a variety of topical steroids. My feet are tricky and need daily soaking followed by urea and lactic acid cream to soften and breakdown the plaques so that the topical steroid can get to work (all wrapped up overnight in clingfilm or a plastic bag if it's not too hot). I've been on a concerted four+ month mission with my feet, they are probably 75% - 80% better than they were but would not make a beauty parade yet!

I'm taking Simponi. It should help with skin disease but, as with Humira, it can also cause psoriasis. I also take a beta blocker, atenolol, which can also exacerbate pre-existing p. My atenolol dose was doubled about the same time I started Simponi so it's impossible to say if one or other of these is implicated. My fatigue remains dire too ... psoriasis? I don't know. If I have to accept inefficacy somewhere I guess I can live with some psoriasis EXCEPT my feet, they already hurt enough to walk on from the PsA.

Hope you get some helpful ideas from your rheumy or a referral to dermatology for expert input.

3

Wow, thanks Jules - much food for thought. I'm trying to get beyond 'peri-anal' .... it has a name then! It does not deserve one.

So you had a very long P holiday too, as well as long-term P. I am bracing myself to put up with this for a long time, then any let-up will be extra-appreciated.

That is quite a management routine you describe. I'm getting used to slathering myself in emollient every morning. I suppose I had P on my feet before ... the bio nurse thought so but to me it was just very dry & flaky skin. But exactly the same area now has much more obvious P.

Yep, off to dermatology on Tuesday. They must have quite a list to work through as my appt. is at 6.45pm!

4

Ugh, Sybil, what can you expect? I guess you can expect to be surprised every day with what having a disease that's actually two diseases in one can do to you! It's so discouraging to hear that friends who were doing quite well suddenly have flares of new symptoms to deal with. It reminds all of us that nothing is a for sure--can't stay on MTX because it harms the liver, the biologics can work great and give us hope for months or even years just to mysteriously stop working for no known reason, a cream or pain pill works for awhile and just stops working....at the least it's annoying and at worst, depressing!

My psoriasis started with a vengeance shortly after I quit smoking in my early 20s. Luckily we got it under control to only on my scalp, elbows and knees most of the time. Funny, all those other places you mentioned--armpits, under my boobs, navel, groin, butt crack, ears--off and on I'd have breakouts in those places but betamethasone a couple days would clear that up. Omg the pain I had at the top of my butt crack(sorry if this is too graphic for everyone)but I'd get it there about 4 times a year. I never even knew that was psoriasis. I always thought it was from wiping myself too hard! It would turn bright red and then the skin would open up--the pain was almost unbearable. I never told the doctor and would avoid sex with my husband when it was active there because I was so embarrassed about it! I'd use betamethasone very sparingly and that would cure it in about 3 days. I haven't had it or any psoriasis other than my elbows, knees and one shin since I've been on Enbrel.

Sybil, I know this is discouraging, especially because you seemed to be doing so well for a long time. The fatigue--that seems more like the return of a PsA symptom-that was one of my first PsA symptoms I think--not knowing what it was and never mentioning it to my doctor. You went off MTX a few months ago and maybe your body's reacting to that. Have you increased the Humira? Will you try a different biologic? I keep hoping it's going to settle down for you! I wish I could say "try this magic cure!" but Idk of a magic cure. Did you read the blog about sugar? Have you tried reducing sugar to see if that helps? Psoriasis is no fun and if you're like me you're totally self-conscious and embarrassed about it.

Hopefully, your doctor will have some answers.

5

Oh yes "it" has a name and a whole section on Dermnet dedicated to it (but trust me you really don't want/need to look). My doc has suggested I keep a tubes of Canesten Hydrocortisone around, it's a mild steroid safe to use in that area with a docs approval (and natal cleft, belly button, under breasts) once a day for a few days ... then a few days off and repeat as necessary. It's also got a mild anti-fungal in it which is great to make sure these dark sweaty places don't develop another problem. My sanity has been saved many-a-time by this small tube of cream!

6

That's an interesting thought about Mtx Grandma J. Not a lot I can do about that though. As for sugar .... I don't really like it as a staple part of my diet and cook most meals from scratch without it. I think of sugar as an almost useless food & don't need much persuading that it's bad news. But sometimes chocolate cake makes my day.

I didn't want to discourage you or anyone. I guess where I am right now it's swings & roundabouts rather than doom & gloom. When the psoriasis arrived so did more pain, enough to (nearly) stop me walking for a couple of days. I felt very sorry for myself. BUT ...... things changed. My norm has been constant mild pain in feet ..... have not had any of that for a couple of months now. And hip bursitis was another nagging problem - not now it isn't. Fatigue - well, I'm working on that & it's been a good week.

It's good that Enbrel has sorted your psoriasis. I wouldn't be surprised if Humira could yet sort mine out even if it has helped cause it .... the mechanisms are so beyond me that if the dermatologist told me that could happen I'd believe them. Getting a second bio for PsA in the UK is very difficult so I don't want to think about that yet.

Thanks for your great reply, it's nice to have the chance to get a few things off my chest & hear your thoughts & ideas. Getting discouraged is not on the agenda!!


Grandma J said:

Ugh, Sybil, what can you expect? I guess you can expect to be surprised every day with what having a disease that's actually two diseases in one can do to you! It's so discouraging to hear that friends who were doing quite well suddenly have flares of new symptoms to deal with. It reminds all of us that nothing is a for sure--can't stay on MTX because it harms the liver, the biologics can work great and give us hope for months or even years just to mysteriously stop working for no known reason, a cream or pain pill works for awhile and just stops working....at the least it's annoying and at worst, depressing!

My psoriasis started with a vengeance shortly after I quit smoking in my early 20s. Luckily we got it under control to only on my scalp, elbows and knees most of the time. Funny, all those other places you mentioned--armpits, under my boobs, navel, groin, butt crack, ears--off and on I'd have breakouts in those places but betamethasone a couple days would clear that up. Omg the pain I had at the top of my butt crack(sorry if this is too graphic for everyone)but I'd get it there about 4 times a year. I never even knew that was psoriasis. I always thought it was from wiping myself too hard! It would turn bright red and then the skin would open up--the pain was almost unbearable. I never told the doctor and would avoid sex with my husband when it was active there because I was so embarrassed about it! I'd use betamethasone very sparingly and that would cure it in about 3 days. I haven't had it or any psoriasis other than my elbows, knees and one shin since I've been on Enbrel.

Sybil, I know this is discouraging, especially because you seemed to be doing so well for a long time. The fatigue--that seems more like the return of a PsA symptom-that was one of my first PsA symptoms I think--not knowing what it was and never mentioning it to my doctor. You went off MTX a few months ago and maybe your body's reacting to that. Have you increased the Humira? Will you try a different biologic? I keep hoping it's going to settle down for you! I wish I could say "try this magic cure!" but Idk of a magic cure. Did you read the blog about sugar? Have you tried reducing sugar to see if that helps? Psoriasis is no fun and if you're like me you're totally self-conscious and embarrassed about it.

Hopefully, your doctor will have some answers.

7

Well I've been thinking a lot about peri-anal or butt crack. Years ago I read something by a Yogi (as in Yoga master, not Yogi Bear) about how that area doesn't get enough, or rather any, sun and could really do with it.

My bedroom window isn't overlooked and it opens wide enough to let the sun in properly (I don't think it's as good through glass). It is a bit overcast this morning, but as soon as the sun comes out I'm going to lie on the floor and give my p-a, b c a real treat. I expect I'll need a few sessions to see any difference but don't worry ... I'll report back!

Jules G said:

Oh yes "it" has a name and a whole section on Dermnet dedicated to it (but trust me you really don't want/need to look). My doc has suggested I keep a tubes of Canesten Hydrocortisone around, it's a mild steroid safe to use in that area with a docs approval (and natal cleft, belly button, under breasts) once a day for a few days ... then a few days off and repeat as necessary. It's also got a mild anti-fungal in it which is great to make sure these dark sweaty places don't develop another problem. My sanity has been saved many-a-time by this small tube of cream!

8

Ok, I've just picked myself up from the floor as I fell off my stool laughing at the thought of you doing a 'salute to the sun' through your bedroom window.

9

Since you are all finding some humor in this I have to share this story. I live in Portland, Oregon known for its eclectic weirdness and Saturday night was the annual “naked bike parade”. Yes, we have a parade of roughly 10,000 people who are scantly clothed or fully naked raising awareness to the vulnerability of commuter biker on the road. Oddly I am very modest and would never consider joining but it always goes by parents house and we giggle like insecure children over it all. This year there was a man late 50s I guess with psoriasis on 40% of what I was willing to look at. Kudos to him! Nice to see someone so comfortable in their skin regardless, smiling and not caring! Lol, I figured he was getting some uv treatment as well!

10

You are hilarious, Sybil!!! Yes, report back on the results and your husband's reaction if he saw you there, please!

Sybil said:

Well I've been thinking a lot about peri-anal or butt crack. Years ago I read something by a Yogi (as in Yoga master, not Yogi Bear) about how that area doesn't get enough, or rather any, sun and could really do with it.

My bedroom window isn't overlooked and it opens wide enough to let the sun in properly (I don't think it's as good through glass). It is a bit overcast this morning, but as soon as the sun comes out I'm going to lie on the floor and give my p-a, b c a real treat. I expect I'll need a few sessions to see any difference but don't worry ... I'll report back!

Jules G said:

Oh yes "it" has a name and a whole section on Dermnet dedicated to it (but trust me you really don't want/need to look). My doc has suggested I keep a tubes of Canesten Hydrocortisone around, it's a mild steroid safe to use in that area with a docs approval (and natal cleft, belly button, under breasts) once a day for a few days ... then a few days off and repeat as necessary. It's also got a mild anti-fungal in it which is great to make sure these dark sweaty places don't develop another problem. My sanity has been saved many-a-time by this small tube of cream!

11

If I didn't laugh at the absurdness of all this I'd start crying and probably never stop. My neighbour asked me this afternoon why I was wearing (with my lovely cool cropped linen shorts) socks and shoes rather than sandals. I tried my Birkenstocks this morning and within a couple of hours my skin was screaming for moisturiser so I applied and returned to occlusion of socks and shoes.

So, ok, I looked stupid but I wasn't expecting to see anyone ..... I was tempted to slip them off and show her my disintegrating feet.

Good on that biker, Rachael. We have a nudist beach on my favourite local coastline but I've never ventured there ... not my thing p or no p.

12

Slight hitch. Forgot the windows face North-West and was too busy this evening. I shall commence this treatment regime ASAP however.

We have to wear what we want, right? And the rest of the world can take a hike. I'm not going to shave my legs with this rash but I'm not going to cover them up either, not in this weather.

Jules G said:

Ok, I've just picked myself up from the floor as I fell off my stool laughing at the thought of you doing a 'salute to the sun' through your bedroom window.

13

Fair play to him! Hope he had a nice comfy saddle.

Rachael said:

Since you are all finding some humor in this I have to share this story. I live in Portland, Oregon known for its eclectic weirdness and Saturday night was the annual "naked bike parade". Yes, we have a parade of roughly 10,000 people who are scantly clothed or fully naked raising awareness to the vulnerability of commuter biker on the road. Oddly I am very modest and would never consider joining but it always goes by parents house and we giggle like insecure children over it all. This year there was a man late 50s I guess with psoriasis on 40% of what I was willing to look at. Kudos to him! Nice to see someone so comfortable in their skin regardless, smiling and not caring! Lol, I figured he was getting some uv treatment as well!
14

Yes, I'm with you on the leg shaving. I have been way too scared to hair remove on my shins where I have the erythema nodosum just in case it then causes psoriasis. Do let us know how things go tomorrow both with the 'salute to the sun' and your dermy appointment.

15

Yes, Sybil, let us know how things went with your dermie appointment and your solar treatment.

16

Back from the palatial private clinic to which the NHS fast-tracks patients with possible skin cancer (one patch is particularly odd looking). Saw a nurse who said she'd just check me out for cancer but when she saw the rest of me she went off to fetch a doc. He said he was really a cancer specialist and didn't think the 'thing' was cancer. He didn't know what to make of my other patches but thought it might be a combo of psoriasis, discoid eczema and fungal infection. Kind of like a mixed herbaceous border.

So I've got another appt. tomorrow to see his illustrious colleagues to be double sure I don't need a biopsy and hopefully get to grips with the other stuff. I am somewhat reassured as well as utterly gob-smacked by the great care I'm getting.

17

And tomorrow I'll ask what they think of sun-worshipping as a treatment for the old peri-anal butt crack situation (and other less hilarious areas too).

18

Glad the appointment went well and it's not looking like the really nasty stuff. Will keep my fingers crossed for tomorrow and look forward to hearing how they tackle everything 'down there'.

I'm trying the sun-worshipping for my feet .... I was carefully perched on a relaxing garden chair in the shade, feet in full sun resting on another chair and a copy of Gardens Illustrated artfully draped across the skin between the bottom of my cropped linen trousers for the 20 minutes my feet that we receiving 'therapy' in the garden this afternoon.

19

Sounds like great therapy all round Jules!

Jules G said:

Glad the appointment went well and it's not looking like the really nasty stuff. Will keep my fingers crossed for tomorrow and look forward to hearing how they tackle everything 'down there'.

I'm trying the sun-worshipping for my feet .... I was carefully perched on a relaxing garden chair in the shade, feet in full sun resting on another chair and a copy of Gardens Illustrated artfully draped across the skin between the bottom of my cropped linen trousers for the 20 minutes my feet that we receiving 'therapy' in the garden this afternoon.

20

Jules, the quality of the therapy is greatly influenced by your hydration level. What were you drinking at the time?