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Post by cargem12 on Sept 18, 2020 18:06:15 GMT -6
Hi,
Wondering if anyone here has had any success with treatment for psoriasis, particularly on the scalp. Long story short I was diagnosed with rheumatoid arthritis 12ish years ago and have been on a biologic for most of those 12 years aside from a 2 year period where it went into remission during/ after my first pregnancy. During my last pregnancy I had tons of flares (stopped my Humira during pregnancy) and developed psoriasis BAD on my scalp. My rheumatologist was kind of perplexed because I have never had any skin involvement before. Anyway, I can’t get this psoriasis under control and am experiencing tons of hair loss. Today I saw my rheum and derm together (they do a joint clinic) and my derm is now saying I have psoriatic alopecia.
I started a new med which is done via infusion (Simponi Aria) but I’ve only had 1 round so far and I guess it can take awhile to work. I guess I’m wondering if anyone has ever experienced anything like this and found something topical that works? Will my hair grow back? I think I’ve been given 10 different prescriptions at this point and I’m worried that all this crap I’m putting on my scalp is further contributing to hair loss. The one that works best leaves my hair feeling like I showered in butter for DAYS. To complicate things, I started picking at my scalp a long time ago and now do it when I’m anxious (which is basically all the time). Autoimmune crap is the pits.
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joy
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Post by joy on Sept 18, 2020 18:34:03 GMT -6
I am sorry you’re dealing with this. My mom has psoriatic arthritis with scalp involvement. I actually am not sure what biologic she is on now (it’s been so many). I can’t help much more but I did want to offer some sympathy.
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wedding
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Post by wedding on Sept 18, 2020 20:53:25 GMT -6
I developed this a few years ago shortly after having a surgery. The Dr said it was my bodies response to stress. I also have Type 1 diabetes , so an autoimmune disease. When Covid started I got rosacea for the first time ever as a response to stress. Basically my body revolts against me at every turn.
Anyway, mine will come and go depending on the amount of stress in my life. But I have also gotten in the habit of picking it when anxious too. I have fluocinonide solution to dab on the lesions and when I do and can stop picking they go away. If I develop a new lesion and don’t pick it will go away fairly quick. For me not picking is what will clear it up. The picking has caused hair thinning I think due to the hair breaking off when I pick. I have not lost patches but have noticed areas where it looks barbed because the hair broke.
I have no tips on stopping picking. I’m in therapy to manage my stress and anxiety and on meds. I’m not sure what else I can do.
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Post by madlizmom on Sept 18, 2020 21:13:32 GMT -6
Sorry you’re dealing with this - I have discoid lupus, and one of the symptoms is scarring alopecia. Basically, once my hair falls out, the follicle scars over and the hair can never grow back. My dermatologist has me on Otezla to try and keep the inflammation at bay, because she thinks when it’s inflamed, I get lesions that mimic psoriasis, and it causes more hair to fall out. She also has me using Clobetasol gel on my scalp, which I think helps a ton. I put it directly onto my scalp after washing my hair. When I use that, I feel like the lesions are far, far less. It’s a water based gel, so it doesn’t make my hair all sticky or greasy. Good luck!
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Post by wesleycrusher on Sept 18, 2020 22:44:19 GMT -6
My husband has psoriatic arthritis and one of the places he has psoriasis is on his scalp. Not the whole thing, but he gets large plaques. He's been on a lot of different biologics over the years- humira, enbrel, cimzia, xeljanz and remicade are the ones I remember- and otezla. Even when they work for his joints, he's never had success with any helping the psoriasis. He's always had to use topical creams and ointments which are a pain so he's not consistent with their use...like will use for a few months and get tired of the time commitment and stop and they'll come back. He's tried medicated shampoo with no results. Like PP he uses clobetasol on his scalp which works but he has to be consistent. Now that he's getting older the hair thinning is getting more noticable but he hasn't seen the dermatologist recently to discuss. So no real solution, but commiseration. Sorry you're going through this.
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Post by flamingo on Sept 19, 2020 6:14:53 GMT -6
I'm so sorry you're dealing with this. My psoriasis appeared in college and it is the pits. I've been on Humira for psoriasis 10+ years (with time out for pregnancies), and got the PsA diagnosis in the last couple years, as well. Thankfully as long as I take my Humira regularly my skin is clear and I don't have any joint pain.
I do get psoriasis on my scalp. The Humira seems to take care of the worst of it. Most of the 'spots' I get are along my hairline at my neck, so it's a little easier to spot-treat. Taclonex is the most aggressive/successful topical product I've ever used and works better (IME) than halobetasol or similar, so maybe ask your derm to try that? You can't use it on your face, IIRC, but anywhere else is a go.
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Post by rachacha on Sept 19, 2020 7:24:30 GMT -6
Humira works the best for me. I’ve also had kenalog injections directly in particularly bad plaques to help clear them up faster. Not pleasant, but it helps. I’ve never had good results with topical treatments.
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Post by cargem12 on Sept 19, 2020 10:50:34 GMT -6
My husband has psoriatic arthritis and one of the places he has psoriasis is on his scalp. Not the whole thing, but he gets large plaques. He's been on a lot of different biologics over the years- humira, enbrel, cimzia, xeljanz and remicade are the ones I remember- and otezla. Even when they work for his joints, he's never had success with any helping the psoriasis. He's always had to use topical creams and ointments which are a pain so he's not consistent with their use...like will use for a few months and get tired of the time commitment and stop and they'll come back. He's tried medicated shampoo with no results. Like PP he uses clobetasol on his scalp which works but he has to be consistent. Now that he's getting older the hair thinning is getting more noticable but he hasn't seen the dermatologist recently to discuss. So no real solution, but commiseration. Sorry you're going through this. That’s where I am right now- no joint pain, thankfully, but still can’t get the psoriasis under control. I do need to be more consistent with the topicals. |
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Post by cargem12 on Sept 19, 2020 10:52:37 GMT -6
I developed this a few years ago shortly after having a surgery. The Dr said it was my bodies response to stress. I also have Type 1 diabetes , so an autoimmune disease. When Covid started I got rosacea for the first time ever as a response to stress. Basically my body revolts against me at every turn. Anyway, mine will come and go depending on the amount of stress in my life. But I have also gotten in the habit of picking it when anxious too. I have fluocinonide solution to dab on the lesions and when I do and can stop picking they go away. If I develop a new lesion and don’t pick it will go away fairly quick. For me not picking is what will clear it up. The picking has caused hair thinning I think due to the hair breaking off when I pick. I have not lost patches but have noticed areas where it looks barbed because the hair broke. I have no tips on stopping picking. I’m in therapy to manage my stress and anxiety and on meds. I’m not sure what else I can do. Sorry to hear you deal with this as well. I am on anxiety meds but the picking has become almost second nature, and not to be gross but when you have these huge scales on your head it’s so hard not to pick them. I am really considering looking into hypnotherapy or something, I somehow need to kick this habit because I definitely realize the picking is making it much worse because it never has a chance to fully heal. |
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Post by cargem12 on Sept 19, 2020 10:54:01 GMT -6
Sorry you’re dealing with this - I have discoid lupus, and one of the symptoms is scarring alopecia. Basically, once my hair falls out, the follicle scars over and the hair can never grow back. My dermatologist has me on Otezla to try and keep the inflammation at bay, because she thinks when it’s inflamed, I get lesions that mimic psoriasis, and it causes more hair to fall out. She also has me using Clobetasol gel on my scalp, which I think helps a ton. I put it directly onto my scalp after washing my hair. When I use that, I feel like the lesions are far, far less. It’s a water based gel, so it doesn’t make my hair all sticky or greasy. Good luck! I have clobetasol too- I need to be more consistent with using it. Has the otezla helped? I asked the NP about that medication and she didn’t seem to think it would be high on the list of meds to try first. |
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Minerva
Ruby
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Post by Minerva on Sept 19, 2020 11:03:43 GMT -6
I developed this a few years ago shortly after having a surgery. The Dr said it was my bodies response to stress. I also have Type 1 diabetes , so an autoimmune disease. When Covid started I got rosacea for the first time ever as a response to stress. Basically my body revolts against me at every turn. Anyway, mine will come and go depending on the amount of stress in my life. But I have also gotten in the habit of picking it when anxious too. I have fluocinonide solution to dab on the lesions and when I do and can stop picking they go away. If I develop a new lesion and don’t pick it will go away fairly quick. For me not picking is what will clear it up. The picking has caused hair thinning I think due to the hair breaking off when I pick. I have not lost patches but have noticed areas where it looks barbed because the hair broke. I have no tips on stopping picking. I’m in therapy to manage my stress and anxiety and on meds. I’m not sure what else I can do. Sorry to hear you deal with this as well. I am on anxiety meds but the picking has become almost second nature, and not to be gross but when you have these huge scales on your head it’s so hard not to pick them. I am really considering looking into hypnotherapy or something, I somehow need to kick this habit because I definitely realize the picking is making it much worse because it never has a chance to fully heal. I hear you. I’ve gotten psoriasis on my scalp, on my eye lids, and behind my ears, in addition to knees and elbows. I can usually control it with medicated shampoos and topicals, but once I get lesions on my scalp, I really struggle not to pick at them. Its a very strong compulsion. I’m very lucky that my large lesions have improved a lot since childhood. Over the past five years, my major flares have all been the guttate form and have cleared up with steroids. |
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Post by madlizmom on Sept 19, 2020 19:55:25 GMT -6
Sorry you’re dealing with this - I have discoid lupus, and one of the symptoms is scarring alopecia. Basically, once my hair falls out, the follicle scars over and the hair can never grow back. My dermatologist has me on Otezla to try and keep the inflammation at bay, because she thinks when it’s inflamed, I get lesions that mimic psoriasis, and it causes more hair to fall out. She also has me using Clobetasol gel on my scalp, which I think helps a ton. I put it directly onto my scalp after washing my hair. When I use that, I feel like the lesions are far, far less. It’s a water based gel, so it doesn’t make my hair all sticky or greasy. Good luck! I have clobetasol too- I need to be more consistent with using it. Has the otezla helped? I asked the NP about that medication and she didn’t seem to think it would be high on the list of meds to try first. My derm thinks so, but it’s more to control the inflammation and redness than the lesions that form. But she said that the lesions are forming due to the scalp being inflamed. So I guess it all goes hand in hand. Mine isn’t technically psoriasis though, so I don’t know how that plays into it. |
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Post by notexactly on Sept 24, 2020 14:44:21 GMT -6
cargem12 Look into Maple Holistics on Amazon. They have a lot of good sulfate free shampoos and conditioners that help with the itchy scalp and promote hair growth.
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McBenny
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Post by McBenny on Sept 24, 2020 15:35:01 GMT -6
This might not have anything to do with it but make sure you are not using any Tide products. Even free and clear. I had sores and stuff all on my head. It was miserable.
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Post by taconight on Sept 25, 2020 8:29:53 GMT -6
Hi, I'm days late but I'm sort of in the same boat. I have Crohn's disease, and I take Humira to control it. But my scalp cannot be controlled. I constantly have the flaky patches. I was using Clobetasol (sp?) shampoo and foam, and it was just working ok. Not eliminating it, but reducing it. My dermatologist switched me to Lexette, but it gave me folliculitis, so I've had to stop. She wants me to go back to the Clobetasol. I feel like it'll just always be a thing I have to deal with since there doesn't seem to be a good solution for me.
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Post by cargem12 on Sept 25, 2020 8:33:55 GMT -6
cargem12 Look into Maple Holistics on Amazon. They have a lot of good sulfate free shampoos and conditioners that help with the itchy scalp and promote hair growth. Thank you I will definitely try some! I really need the hair growth. |
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Post by cargem12 on Sept 25, 2020 8:35:08 GMT -6
This might not have anything to do with it but make sure you are not using any Tide products. Even free and clear. I had sores and stuff all on my head. It was miserable. This is interesting- I don't use any Tide products at the moment, but it is in my rotation of things I use here and there depending on sales. |
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Post by cargem12 on Sept 25, 2020 8:38:15 GMT -6
Hi, I'm days late but I'm sort of in the same boat. I have Crohn's disease, and I take Humira to control it. But my scalp cannot be controlled. I constantly have the flaky patches. I was using Clobetasol (sp?) shampoo and foam, and it was just working ok. Not eliminating it, but reducing it. My dermatologist switched me to Lexette, but it gave me folliculitis, so I've had to stop. She wants me to go back to the Clobetasol. I feel like it'll just always be a thing I have to deal with since there doesn't seem to be a good solution for me. That's so weird! Seems like scalp issues are something that goes along w various auto immune issues? Do you have problems w any other areas on your skin, or just scalp? I was like you thinking it is just something I have to deal with, however now that my derm is calling is psoriatic alopecia and I am having serious hair loss/ bald spots I am starting to panic. Supposedly this new med that I am getting via infusion should help but it could take months. |
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McBenny
Unicorn
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Post by McBenny on Sept 25, 2020 8:43:37 GMT -6
This might not have anything to do with it but make sure you are not using any Tide products. Even free and clear. I had sores and stuff all on my head. It was miserable. This is interesting- I don't use any Tide products at the moment, but it is in my rotation of things I use here and there depending on sales. I had a dermotologist tell me even free and clear is harsh. He said it has the most chemicals out of everything out there so it's harsh on skin. |
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Post by taconight on Sept 25, 2020 9:27:53 GMT -6
Hi, I'm days late but I'm sort of in the same boat. I have Crohn's disease, and I take Humira to control it. But my scalp cannot be controlled. I constantly have the flaky patches. I was using Clobetasol (sp?) shampoo and foam, and it was just working ok. Not eliminating it, but reducing it. My dermatologist switched me to Lexette, but it gave me folliculitis, so I've had to stop. She wants me to go back to the Clobetasol. I feel like it'll just always be a thing I have to deal with since there doesn't seem to be a good solution for me. That's so weird! Seems like scalp issues are something that goes along w various auto immune issues? Do you have problems w any other areas on your skin, or just scalp? I was like you thinking it is just something I have to deal with, however now that my derm is calling is psoriatic alopecia and I am having serious hair loss/ bald spots I am starting to panic. Supposedly this new med that I am getting via infusion should help but it could take months. I also have eczema on random parts of my body, but I'm able to control that. The scalp thing is weird, though, it just won't go away. I have a follow up next week to see what my derm thinks we should do next. I thought the medicine that controls my Crohn's should help with the scalp, right? But it's not. I do worry it could lead to hair loss, so I keep trying different things. |
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Post by cargem12 on Sept 25, 2020 10:07:22 GMT -6
taconight have you had your scalp biopsied to confirm what it is? I had one which confirmed psoriasis. Humira is used to treat psoriasis so I was super confused. My Rheum told me that if Humira is ineffective in treating psoriasis, it can actually make it worse. So I guess for whatever reason Humira was not working for my psoriasis (sounds like yours too) it was working great for my RA, so I was kind of hesitant to switch meds, but this new med is supposed to treat both as well so we will see.
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Post by taconight on Sept 25, 2020 10:12:25 GMT -6
taconight have you had your scalp biopsied to confirm what it is? I had one which confirmed psoriasis. Humira is used to treat psoriasis so I was super confused. My Rheum told me that if Humira is ineffective in treating psoriasis, it can actually make it worse. So I guess for whatever reason Humira was not working for my psoriasis (sounds like yours too) it was working great for my RA, so I was kind of hesitant to switch meds, but this new med is supposed to treat both as well so we will see. That's interesting! No, I don't think I've ever had the flaky patches biopsied, but I'll ask my derm about it next week. I'm currently waiting on the results from a biopsy of the folliculitis. My derm thinks it's sterile folliculitis, but we sent it off to test for infection to be safe, because I get a ton of infections on the Humira. I'd also be really hesitant to switch, since the med is working for my Crohn's, which is a much bigger concern than the skin issue. But if it gets worse, I may change my mind about that. |
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Post by cargem12 on Sept 25, 2020 10:56:50 GMT -6
taconight have you had your scalp biopsied to confirm what it is? I had one which confirmed psoriasis. Humira is used to treat psoriasis so I was super confused. My Rheum told me that if Humira is ineffective in treating psoriasis, it can actually make it worse. So I guess for whatever reason Humira was not working for my psoriasis (sounds like yours too) it was working great for my RA, so I was kind of hesitant to switch meds, but this new med is supposed to treat both as well so we will see. That's interesting! No, I don't think I've ever had the flaky patches biopsied, but I'll ask my derm about it next week. I'm currently waiting on the results from a biopsy of the folliculitis. My derm thinks it's sterile folliculitis, but we sent it off to test for infection to be safe, because I get a ton of infections on the Humira. I'd also be really hesitant to switch, since the med is working for my Crohn's, which is a much bigger concern than the skin issue. But if it gets worse, I may change my mind about that. Sounds like we have similar situations...I got 2 spots biopsied on my back last week that both my derm and rheum looked at and don't think those spots are psoriasis. So hopefully the biopsy will be telling for those. Also if you haven't tried Enstilar on your scalp, that is the topical that I have found to work the best. However the only reason I can use it is because I am working from home and don't need to face the public everyday/ or go anywhere that I care what I look like- I think I mentioned up thread that it makes my hair greasy as heck and takes washing it a few times to get it totally out. My derm told me to use it twice a day and looked at me like I was a total moron when I said I cant use it if I have to go into the office or even do zoom meetings with clients. Men.  I am also waiting on getting a phototherapy comb from insurance that the derm prescribed. He referred me to another derm office, apparently the only one in my city that has some particular type of laser machine to do scalp treatment but it has to be twice a week for 8 weeks. No can do with 3 little kids and working full time. Just so frustrating all around! |
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Post by madlizmom on Sept 25, 2020 20:04:57 GMT -6
Hi, I'm days late but I'm sort of in the same boat. I have Crohn's disease, and I take Humira to control it. But my scalp cannot be controlled. I constantly have the flaky patches. I was using Clobetasol (sp?) shampoo and foam, and it was just working ok. Not eliminating it, but reducing it. My dermatologist switched me to Lexette, but it gave me folliculitis, so I've had to stop. She wants me to go back to the Clobetasol. I feel like it'll just always be a thing I have to deal with since there doesn't seem to be a good solution for me. Did you have to get the clobetasol shampoo through an rx? I use the gel, but I’m wondering if the shampoo would be easier and more beneficial. |
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Post by taconight on Sept 26, 2020 7:18:44 GMT -6
Hi, I'm days late but I'm sort of in the same boat. I have Crohn's disease, and I take Humira to control it. But my scalp cannot be controlled. I constantly have the flaky patches. I was using Clobetasol (sp?) shampoo and foam, and it was just working ok. Not eliminating it, but reducing it. My dermatologist switched me to Lexette, but it gave me folliculitis, so I've had to stop. She wants me to go back to the Clobetasol. I feel like it'll just always be a thing I have to deal with since there doesn't seem to be a good solution for me. Did you have to get the clobetasol shampoo through an rx? I use the gel, but I’m wondering if the shampoo would be easier and more beneficial. Yes, I got the shampoo and the foam with an rx. I didn’t even think or check if they’d be OTC. But rx is usually stronger, too, right? |
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