Psoriasis- Desperate!

Posted by hopenr @hopenr, Aug 18 9:42pm

I have had psoriasis for about a year. It started on my legs and is creeping up so that one tube of steroidal cream is good for about three applications and it is expensive! I use pine tar soap and I take vitamins D, K, Calcium, Magnesium and zinc. I do not eat gluten or dairy. I use clobetasol and tacrolimus. And....it just doesnt get better. I just had covid during which time it got way worse. I simply do not know what else to do so I am asking you all- who has had good luck on a biologic? I have been scared to try it cause I dont want to lower my immune strength but I am desperate. Can you let me now. Thank you!

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Profile picture for njbay @njbay

I have psoriatic arthritis, so I have both the arthritis and rash. I think I had it most of my lift and didn't know it because it was very mild when I was young. Once it hit menopause, my psoriasis exploded.

I tried all the usual things, UVB light treatments, clobetasol (which wasn't enough for almost my entire body), changing diet, and nothing was helping, so I started Humira. It took quite a while to work, but after about a year and 1/2 or so, I was about 75 to 80% clear. I did have many problems with my pharmacy, though, and ended up getting late doses and missed doses. At one point, I had nothing for about 2 months, so my Doctor at the time suggested I try Consentyx. Well, my pharmacy and insurer denied me for Cosentyx and said I had to try Skyrizi, so I tried that. Apparently, Skyrizi is very successful for many people, but not me, unfortunately. Both my skin and joints went completely downhill while taking it.

Then I had go back to a Rheumatologist because my knee got so inflamed, and had me go back on Humira while adding methotrexate. That worked a bit better, but at one point, she had me take the Humira every 10 days rather than every 14 days. I did that for quite a few months until my pharmacy suddenly made me stop. It figured because the combo of Humira every 10 days along with methotrexate (even though I had awful side effects from the methotrexate) worked the best. I was almost completely clear of my rash once my pharmacy stopped me from taking it every 10 days. Back to every 14 days wasn't working as well, and my side effects from methotrexate were getting unbearable, so I stopped it for about 6 months.

Then at one point, my pharmacy stopped providing Humira all together, so I had to switch again. My Doc and I chose a biosimilar, but it didn't work nearly as well for me.

I have also since completely stopped methotrexate, again due to the side effects. At one point I tried the injectable format instead of the pills because my Doc said some people do better on the injections. It didn't seem to matter for me, though.'

Now, as of 4 or 5 months ago, I've been taking Cosentyx. My pharmacy allowed it this time, I guess because of the failure of Skyrizi and the Humira biosimilar. It has not been working yet and my skin has been getting worse again. The itching had come back full force, though my joints aren't too bad. Maybe it works better for my joints than my skin. At last month's office visit, my Doc and I decided to try the higher dose of Cosentyx (300mg instead of 150mg per month), so I will see how that goes. I am due to my first dose of the 300 mg in about 2 weeks.

There are many biologic options available that target different proteins in the body, so if one doesn't work, there are others to try. It can be frustrating, though, because the results usually don't happen right away. Taking methotrexate along with biologics can help alot if you can tolerate the side effects. Not everyone gets side effects, either.

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Wow, what a roller coaster. I sincerely hope you find the just right course of medicine that gets you feeling better.Thank you for sharing your experience!

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Profile picture for hopenr @hopenr

Wow, what a roller coaster. I sincerely hope you find the just right course of medicine that gets you feeling better.Thank you for sharing your experience!

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Thank you!

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I have very bad psoriasis on my scalp.... horrific itching... and my skin doctor told me that it is a side effect from my biological injections (2x a month) for my atopic dermatitis!

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Profile picture for katie360 @katie360

I have very bad psoriasis on my scalp.... horrific itching... and my skin doctor told me that it is a side effect from my biological injections (2x a month) for my atopic dermatitis!

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@katie360 I have very bad psoriasis on my scalp too. Methotrexate was very effective but u fortunately Inhad to stop taking that because of concern it might affect my fatty liver disease. Then I was given Stelara, a biologic injection that did nothing for me. Was switched to Skyrizi after eighteen months and it too did nothing for me so I was switched to Bimzelx injection every eight weeks and it has cleared my psoriasis almost 100%. There is just one, dime sized stubborn patch on my elbow which refuses to clear but that is okay because it is not too severe. Moisturizer keeps it from flaking much.

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I am on Otezla 2x day . I have several autommune diseases and also psoriasic arthritis. It has been a God send I had it on my feet and hands. I could hardly walk because it was so bad. My hands and feet would bleed so bad I would have to wrap them and bleed through. I weighted out the possible side effects to how desperate I was for relief. So I would do my research and weigh out the possible side effects. Good luck.

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Profile picture for dmmeyers62 @dmmeyers62

I am on Otezla 2x day . I have several autommune diseases and also psoriasic arthritis. It has been a God send I had it on my feet and hands. I could hardly walk because it was so bad. My hands and feet would bleed so bad I would have to wrap them and bleed through. I weighted out the possible side effects to how desperate I was for relief. So I would do my research and weigh out the possible side effects. Good luck.

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so what side effects have you had?

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It is hard for me to say because I am experiencing symptoms of other autommune diseases so unsure of whether it the otezla or disease. I know I have eat something before taking or I get nausea. It has really helped me. I have so many other skin issues including DH rash (celiac disease) just had biopsy and 5 things came back so glad for med for the psoriasis and psoriasic arthritis.

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I have very mild psoriatic arthritis and low dose naltrexone has taken away most of the pain and cleared up most of my skin. It does take a few months to titrate up the dose but four months later I am at 4 mg per day and most of my skin is clear.

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