Stubborn psoriasis, even though Enbrel is working well for PsA

I have psoriasis creeping up my right leg and on my left knee that Enbrel just can’t seem to resolve. Does anybody else have stubborn psoriasis even though their PsA is pretty much under control? When I took the pic I was having a hard time getting the bleeding under control–I usually get a few cuts on the psoriasis plaques–so annoying! I’ve tried Nair instead of shaving but it doesn’t work very well for me!
I use betamethasone every day on the psoriasis. It stops the itch, but that’s about it. My fingernails aren’t quite normal either. I guess I’d have to say Enbrel is only about 75% effective on my psoriasis–and, maybe I shouldn’t complain!
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My bio, Simponi, hasn't got my psoriasis under control at all. I didn't have much when I was first disgnosed, just plaques on my knees like yours, which the leflunomide healed. For over a year now I've had it bad, bad, bad on the soles of my feet and less bad on my palms, thumbs, behind my ears, odd random spots here and there and inverse in places the sun doesn't shine. The only way I have found to tackle the really resistant plaques (feet/knees/hands) it is to apply the betamethasone (with calcipotriol) before bed, put a thick layer of emoillient on top and cover with food wrap/plastic bag. I do this with my doctors blessing but it's a long haul ... ten months now and I'm finally seeing some sustained healing on the soles of my feet. I've only got two nails affected, both my thumbs, and they continue to get worse. I am just grateful for the healing of my feet, that pain on top of the joint pain was too much to bear some days.

As for hair removal, I avoid anything like Nair/Veet etc. Although it means having to let the hair grow I find that using an epilator is most effective but then my skin is de-sensitised to the plucking by years of waxing/sugaring. I've recently seen a gadget called no-no advertised which seems to get good reviews ... I think it's some kind of thermal technology which dissolves (burns) the hair away and like epilation/waxing/sugaring weakens the folicles and reduces growth over time.

And I don't think you're complaining at all. I call it self-assessment or keeping an inventory ... if we don't do this how would we know how active our disease is, how effective the treatments are and when we need to push for something else!

Nice legs Grandma J! But oh my, nice as they are, I wouldn't use hair remover of any description. It just doesn't seem worth it, whatever method you use you're going to damage the skin somehow. And who knows, hair removal processes may even set off the Koebner effect.

My dermy is pleased with my progress. She said they rarely achieve more than 70% improvement and that's true for me right now. My shins are sisters of your shins. Shay that after a few drinks! But those knees, they look so sore. I think: try hairy and proud.

Oh Jules, you poor thing! I definitely have nothing to complain about after reading about your psoriasis! Is Simponi the only biologic you can take? Is your psoriasis improved at all? That just sounds terrible! Psoriasis on soles of feet must be a killer--sort of like the inverse. I used to get inverse about 6 times a year. I'd put just a tiny bit of betamethasone on it a few times and it would disappear. That, to me, is just as painful as those little cracks off the corners of the fingernails! I had one of those a couple weeks ago and it was the first one I've had since being on Enbrel.

IDK about the No-No for my legs. My hair is more than peach fuzz. I was wondering if it would remove the peach fuzz on my face, though.

It sounds like your feet are very damaged, too. I hope that isn't PsA pain you have!? I'm pretty sure my foot pain is all damage from PsA and other aches and pains I have are just like what anyone without PsA would also have. My PsA symptoms are well under control now. I'll get my white blood cells checked later in December, and I'm crossing my fingers that they are staying normal!

Jules G said:

My bio, Simponi, hasn't got my psoriasis under control at all. I didn't have much when I was first disgnosed, just plaques on my knees like yours, which the leflunomide healed. For over a year now I've had it bad, bad, bad on the soles of my feet and less bad on my palms, thumbs, behind my ears, odd random spots here and there and inverse in places the sun doesn't shine. The only way I have found to tackle the really resistant plaques (feet/knees/hands) it is to apply the betamethasone (with calcipotriol) before bed, put a thick layer of emoillient on top and cover with food wrap/plastic bag. I do this with my doctors blessing but it's a long haul ... ten months now and I'm finally seeing some sustained healing on the soles of my feet. I've only got two nails affected, both my thumbs, and they continue to get worse. I am just grateful for the healing of my feet, that pain on top of the joint pain was too much to bear some days.

As for hair removal, I avoid anything like Nair/Veet etc. Although it means having to let the hair grow I find that using an epilator is most effective but then my skin is de-sensitised to the plucking by years of waxing/sugaring. I've recently seen a gadget called no-no advertised which seems to get good reviews ... I think it's some kind of thermal technology which dissolves (burns) the hair away and like epilation/waxing/sugaring weakens the folicles and reduces growth over time.

And I don't think you're complaining at all. I call it self-assessment or keeping an inventory ... if we don't do this how would we know how active our disease is, how effective the treatments are and when we need to push for something else!

Aw, Sybil, you're the first person ever to say that! Really!! I'm a little bow-legged, so I don't think they're nice, but I better not complain about them too much. All my life I complained about my ugly feet. And then I'd say I'll probably be punished someday for all that complaining about them. Hmmm.....

I am considering myself lucky now that my psoriasis is only what's on the picture plus a little on my elbows and dots of it that randomly pop up here and there. It sounds like your psoriasis is back under control now, except for your shins? I'm wondering why it's so stubborn on our extremities?

No chance of hairy and proud. Too much hair! You're so funny - LMAO!!!

Sybil said:

Nice legs Grandma J! But oh my, nice as they are, I wouldn't use hair remover of any description. It just doesn't seem worth it, whatever method you use you're going to damage the skin somehow. And who knows, hair removal processes may even set off the Koebner effect.

My dermy is pleased with my progress. She said they rarely achieve more than 70% improvement and that's true for me right now. My shins are sisters of your shins. Shay that after a few drinks! But those knees, they look so sore. I think: try hairy and proud.

Yeah, my feet have been pretty awfully painful. My PsA started in my feet and has never left ... it just waxes and wanes but the x-rays I had a few months back aren't showing too much damage, just a bit of erosion in some of the MTP's and it looks like the underneath heel pain might be spurs developing. But I tell you none of that pain is anything compared to the psoriasis which used to crack with really deep fissures so I am delighted to be making some headway treating that. As we know we just have to keep calm and carry on as best we can!

I've been on Simponi coming up for two years. My new rheumy has just put me up from 50mg to 100mg monthly. It's maybe taken the edge off again but nothing like what it was doing to begin with. It's my second biologic ... I started on Humira but that didn't help at all. The way our meds are funded here in the UK it may not be easy to get on to a third which is why we're trying the higher dosage before looking at the options to move on. I'm in that difficult position where I think it does something, not enough, but I'd be scared to go without it and would be fearful of moving on to something else in case that doesn't work and there is no way back to where I am now, especially as I've had problems with the DMARDS.

I'm with you on hair removal. I couldn't let it all hang out. Thirty odd years of waxing/sugaring/epilating has, though, reduced the density of hairs on my legs so I can get away with very infrequent removal. I'm very susceptible to Koebner so were it not for my skin being so used to the procedure and long pre-dating psoriasis I'd likely not start now. There is no way I'd remove the soft peach-fuzz on my face .... once you start and all that! I just make use of some facial bleach on my upper lip from time to time.

Hope your WBC count is good in December. My fingers are crossed for you.

Grandma J said:

Oh Jules, you poor thing! I definitely have nothing to complain about after reading about your psoriasis! Is Simponi the only biologic you can take? Is your psoriasis improved at all? That just sounds terrible! Psoriasis on soles of feet must be a killer--sort of like the inverse. I used to get inverse about 6 times a year. I'd put just a tiny bit of betamethasone on it a few times and it would disappear. That, to me, is just as painful as those little cracks off the corners of the fingernails! I had one of those a couple weeks ago and it was the first one I've had since being on Enbrel.

IDK about the No-No for my legs. My hair is more than peach fuzz. I was wondering if it would remove the peach fuzz on my face, though.

It sounds like your feet are very damaged, too. I hope that isn't PsA pain you have!? I'm pretty sure my foot pain is all damage from PsA and other aches and pains I have are just like what anyone without PsA would also have. My PsA symptoms are well under control now. I'll get my white blood cells checked later in December, and I'm crossing my fingers that they are staying normal!

Yep, I do think you have a decent pair of pins.

My P is much better, on my body it's mostly 'stains' where the rash was so I look rather like a saggy old leopard. Legs still go brilliant red and itchy in the evening but I'm very pleased with the way things are going. There's one product which I think has helped (although it is incredibly difficult to know for sure) and that's Balneum cream which contains urea (lovely!). I do think it calms the P on my legs if I use it every night, it's just emollient but I reckon the urea is a bit magic.

I can't see anything wrong with body hair but maybe I'm weird.


Grandma J said:

Aw, Sybil, you're the first person ever to say that! Really!! I'm a little bow-legged, so I don't think they're nice, but I better not complain about them too much. All my life I complained about my ugly feet. And then I'd say I'll probably be punished someday for all that complaining about them. Hmmm.....

I am considering myself lucky now that my psoriasis is only what's on the picture plus a little on my elbows and dots of it that randomly pop up here and there. It sounds like your psoriasis is back under control now, except for your shins? I'm wondering why it's so stubborn on our extremities?

No chance of hairy and proud. Too much hair! You're so funny - LMAO!!!

Sybil said:

Nice legs Grandma J! But oh my, nice as they are, I wouldn't use hair remover of any description. It just doesn't seem worth it, whatever method you use you're going to damage the skin somehow. And who knows, hair removal processes may even set off the Koebner effect.

My dermy is pleased with my progress. She said they rarely achieve more than 70% improvement and that's true for me right now. My shins are sisters of your shins. Shay that after a few drinks! But those knees, they look so sore. I think: try hairy and proud.

I like Balneum too and the lauromacrogols help with itching. My GP raves about all psoriasis needing urea as it's natures moisturiser. I'm using Calmurid on my feet, it's got lactic acid to break down the thick plaques and urea for moisturisation ... and then I add a petroleum based ointment as well. You definitely don't want to use Calmurid on broken skin as it stings like hell :(.

You're not weird!!! Silly, but not weird - haha!!! If I didn't have hairy ape legs, I'd be more relaxed about it, Sybil, but its sooooooo disgusting! You're probably like most other females with lighter, finer body hair. Well, not me! It's a wonder my facial hair isn't manly, too! Thank God that's only peach fuzz! Jules, I'm with you about using the NoNo on my face and I also bleach my 'stache occasionally! I use Jolene bleach. I certainly would not want to grow a beard, but I think that commonly happens to older women. I get one or two chin hairs--my mom gets a half dozen. I think that's more common with us darker-haired people.

I need to look into that Balneum cream. Never heard of it. Yes, the itch can be intense in the evening--I often scratch it bloody, which I'm sure you probably do, too! Wouldn't we be a charming bunch if we got together--all scratchy and bloody and dropping scales everywhere and walking like we're on sharp rocks.!?

Could it be stress related? My P has really gotten worse shortly after humira. At first dose in days I swear it almost disappeared, down to just redder skin for about a week and then improvement faded some and stayed at that level until next dose. I have had hickup after hickup trying to take on exact intervals with illness and miss injection pen provs but was hopeful. Then my P went into full gear itchy and thick then bloody from scratching even when treating with hydrocortisone like I used to. Looking closely I know the biggest factor that changed was my stress level. As far as PSA I am still slowly improving with more flexibility than have had in two years or so. No expert in this area just throwing it out.

Oh, yes, Rachael. Stress can definitely make my psoriasis symptoms worse....and I sometimes think I'm more achy - especially in my shoulders - when I'm stressed out. I don't know how to avoid all stress--I have figured out what I can and can't do, what my breaking point is, though. After going through teenage years with our four kids who were no angels sometimes (normal kids at least!) and now that they're adults you'd think they'd cause me no stress, but in some ways it's gotten worse. They tell me I worry too much about everything, and I don't deny I'm a bit of a worrier. But I don't get anxious or panicky, so thankfully there are no anti-anxiety pills--at least not yet!!!!!

Oh yes! I know all about “good” teen stress as I currently have two. The third is 10 and mimics them at times because she looks up to them and they are her prime examples. I just thought with Dave’s problems and looking for insurance etc it could be factor. Dave’s problems have not just arrived and with doing everything at times, well thinking about it stresses me out and I’m not even you, plus as you know we have alot in common, lol! I do remember reading and swear during my last rheumy appt she mentioned that P and PSA though related do not always respond to treatment the same. Maybe Enbrel is working for the PSA symptoms and preventing damage but not for the skin issues. I do definitely remember her saying psoriasis specifically was hardest to treat and she flat out can’t explain why we all respond so differently. Like the phrase I’ve heard here “a crap shoot”. How a person balances stress has its ups and downs because exactly what a day or week holds to me is also a crap shoot. Yes, we would definitely be a beautiful bunch if we all got together! I liked that one!!!