Well everyone is talking about their joints. How is everyone doing with their psorasis, you know reason we are all here.
My scalp is doing well. My plaques are fine on one side of my leg but on my left side they are no scales but you can see the skin pigmintation color change.
It's funny. The psoriasis is actually the least of my problems, and only occasionally do I even treat it. I'm one of those people with PsA but minimal psoriasis. Pretty much elbows and knees, and only one knee has every really had "bad" patches. I rarely treat it.
I don't have much psoriasis either. I have a large area on my scalp that I use clobetasol on when it bothers me. The rest of my psoriasis is inverse or guttatae. It is a redden area under my breasts, gluteal folds and ear canals and a sprinkling on my right ankle that looks like I dripped some hot tea there. I do not treat those areas and they do not itch or hurt. I do have trouble with my nails, they are thin and flake or peel easily. My toe nails lifted percariously for a few years but since I have been on a high dose of mtx they have settled back down again. No by far PsA is by far my biggest problem.
My PsA is such a big concern the P is always secondary. My main plaques are on my hands, which is a tough place to have it. The only things that help are strong steroid ointments. Sometimes it flares terribly and spreads, sometimes it gets a little better. I also have it it in my ear canals, behind my ears, sometimes in groin skin folds, and ocassionally a small plaque on my scalp. Before I was on biologics I had A LOT of plaques on my scalp.
I have P on about 95% of my body I have lost over half of my hair and my skin is badly scared I have tried every cream u can think of I do UV treatment 3 times a week and tan 3 times a week take weekly Humira injections but still not getting better my Drs say they have never seen it this bad and said they are out of ideas. The arthritis is totally deformed my left hand and ankle. I have had surgery on my arm to help with the damage of my skin but because of the Humira it’s not healing.
U have no idea how happy it makes me to hear people not having a problem with the psoriasis. I’m 28 and its killing me.
That's really tough Sheena. I know there is a wide range of experiences with psoriasis and PsA, but it's tough to be so young too.
Sheena-- I’ve had good years and bad years for skin with bad, visible psoriasis at 12, then 21 and 35. I’ve done the PUVA as you have too. It’s tough and it would be understandable if it made you feel mad or frustrated. I’ve found that removing any allergens and sensitivities in your diet can help. I finally sprang for the detailed --and less typical – food sensitivity testing. For me, removing all dairy and flour, yeast, gluten helped the skin. It’s hard. Humira helps, enbrel was better for my skin, but recurrent infections made that a less ideal med. I hope the best for you. Hang in there!
Sheena my heart goes out to you. I've struggled with psoriasis for years. I was brought in twice as an inpatient when i was younger for intensive uv. It went away for a few years and came back with a vengeance. I lost patches of hair when it was really bad. I'm the same age as you so I completely understand what it is to have something like this on your body at our age as well as PSA. I got diagnosed with c yesterday as well. On the bright side though. I started on enbrel and was allergic to it (lol that's not the good thing), but then went through humira and infliximab. I'm on simponi now. Except for the fibromyalgia everything is staring to settle down on the simponi. And the latter can be treated a little more easily. You have options. I hope things start to get better :) xx
Sheena said:
I have P on about 95% of my body I have lost over half of my hair and my skin is badly scared I have tried every cream u can think of I do UV treatment 3 times a week and tan 3 times a week take weekly Humira injections but still not getting better my Drs say they have never seen it this bad and said they are out of ideas. The arthritis is totally deformed my left hand and ankle. I have had surgery on my arm to help with the damage of my skin but because of the Humira it's not healing.
U have no idea how happy it makes me to hear people not having a problem with the psoriasis. I'm 28 and its killing me.
I'm so sorry Sheena. When I first got P it was really bad. I was in 3rd grade and I was inpatient at Mayo in MN for a month doing the soaking, wrapping, UV, the whole bit. Diet also helps me some. But really controlling my immune system is the only thing that helps the P calm down. Hugs to you. Severe P is devastating.
Sheena said:
I have P on about 95% of my body I have lost over half of my hair and my skin is badly scared I have tried every cream u can think of I do UV treatment 3 times a week and tan 3 times a week take weekly Humira injections but still not getting better my Drs say they have never seen it this bad and said they are out of ideas. The arthritis is totally deformed my left hand and ankle. I have had surgery on my arm to help with the damage of my skin but because of the Humira it's not healing.
U have no idea how happy it makes me to hear people not having a problem with the psoriasis. I'm 28 and its killing me.
I am doing terrible. Doc had me stop Enbrel which I had been on for most of 4 years and start Humira and psoriasis has flared badly both knees, left leg, left side of stomach and elbows plus right wrist on the inside of arm . I am even getting sores in my palms which I have no idea what that is. Not very happy right now having a lot of joint problems as well.
My P was so much better when I was on high dose steroids. Now that I am tapering down on the steroids my P is flaring something awful. My scalp is always a mess (II have lost quite a bit of hair), in my ears, behind my ears, on my lower back, backs of my upper arms, on my bum cheeks (almost completely covering one cheek), in my belly button, spots on my legs and then some random spots around my body. I had it bad on my elbows/forearms earlier this year - that flare was wiped out with the steroids but I still have discolored skin. I am a mess. So far the MTX doesn't seem to be doing anything for the P and little for the PsA.
I know looking back that I've had P for most my life. But it was always a spot here a spot there. But this summer I began to realize it looked like P on my elbow. And then on my right ankle and then my left ankle, then the knees in one ear etc. When I saw the dermatologist and she diagnosed P she looked at my scalp and said that was bad. I said no that's dry skin I get every year when the heater starts kicking on. Haaa!
But what's weird is most all but my scalp is clear now. And I'm not on anything yet.
My joints is a completely different story. I could barely walk this morning. My hands are now like claws most of the time and I've probably had PsA flares every winter when the doctors just thought I had severe fibro.
I believe I had this for quite some time, I remember around 10 getting little bubbles on my finger tips that would not stop itching. Teenage years a small patch of dry skin on my leg. Then all of a sudden, this year my thumb swelled so bad and my skin was cracked was so off to the deem I went after a month of waiting I was diagnosed with P. Not to soon after started the real pain if PsA. My fingers were hurting, I look at my bf he tells me I have arthritis. The pain just would not let up. Of course, I did some research put two and two together, talked to my doc next thing you know I have a diagnosis. I only had a few small spots of P at my joints wrists, knuckles, knees, ankles were the worst. Have some discoloration on my ankles from the flare. Will my skin ever return to its normal color? Other than that, as soon as I started steroids bye, bye patches. 
Recently I havent had much psoriasis, just a bit of spots on my knees, elbows, scalp, and belly button (DOES ANYONE ELSE HAVE IT IN THEIR BELLY BUTTON??) . Before getting diagnosed it was really bad on my scalp and i had several spots on my arms. I have noticed it getting worse now that I am on Arava instead of MTX though. Great post, i like seeing everyone elses responses to this
i did before the meds started working on it... you might also find it on other parts where it gets quite warm or sweaty. It's called inverse psoriasis. Baby powder after a shower helps get rid of it really quickly. just make sure you keep it clean and dry and then apply any cream :)
xvanex said:
Recently I havent had much psoriasis, just a bit of spots on my knees, elbows, scalp, and belly button (DOES ANYONE ELSE HAVE IT IN THEIR BELLY BUTTON??) . Before getting diagnosed it was really bad on my scalp and i had several spots on my arms. I have noticed it getting worse now that I am on Arava instead of MTX though. Great post, i like seeing everyone elses responses to this
Since being on meds, no skin psoriasis anymore.
My nails are slowly improving.
My psoriasis is horrible. I have it on both arms, both knees, my forehead, in my scalp, and behind my ears. I am a teacher, and at least once a day someone asks me what is wrong with my skin. People in stores stop me to ask me. I live in Los Angeles, so long sleeves all the time are really not an option. I take Enbrel once a week and 25mg of Methotrexate injected once a week as well. I use all of the gels and creams that my Rheumy has given me; nothing really works. Arthritis is just as bad. Hands, feet, knees and now my back are all incredibly painful. I am hoping that my Winter Break coming up will give me more time to relax and hopefully calm all of these flareups down somewhat.
thanks for the suggestion!! its such an awkward spot so im glad to know other people know what im talking about. I will definitely try the baby powder. I dry it well after showering and apply clobetasol. the only problem is that I am brown-skinned and the cream makes the skin on my belly button white so it looks a little weird haha but thats the least of my worries since I dont show my belly much
Carak said:
i did before the meds started working on it... you might also find it on other parts where it gets quite warm or sweaty. It's called inverse psoriasis. Baby powder after a shower helps get rid of it really quickly. just make sure you keep it clean and dry and then apply any cream :)
xvanex said:Recently I havent had much psoriasis, just a bit of spots on my knees, elbows, scalp, and belly button (DOES ANYONE ELSE HAVE IT IN THEIR BELLY BUTTON??) . Before getting diagnosed it was really bad on my scalp and i had several spots on my arms. I have noticed it getting worse now that I am on Arava instead of MTX though. Great post, i like seeing everyone elses responses to this
My P started at around 12 years old and just got steadily worse til I had about 70% coverage, worst ever was after the birth of my children ( about 90% coverage) even had it on and in my privates! In and behind my ears, in my bum crack, under boobs and in my belly button as well as most of my arms legs and trunk.
In jan 2010 I was started on UVB treatment at my local hospital and dovobet cream in the morning and evening. I was clear of P for the first time since being a child in 12 weeks!
Some has returned on my elbows, but soon goes with the cream and since my flare started in August, P has returned on my lower back and bottom where I now have pain in my SI joints. Fingers crossed the increased MTX will help
Hey everyone I have been going to a chlorine pool to do water exercises the last 3 months. My P is improving in the areas that are in the water (ie, not my ears or scalp, as I don't submerge for the exercises). For example, I have a 3" x 2" patch that has been pretty constant for the past 8 yrs. It is now 50% skin! I remembered that when I was a kid that swimming in a chlorinated pool helped my P. Anyone else notice this?