Health Boards
Wed-30-05-2012, 20:21 PM
Had an appointment with my dermatologist today and we have decided it's time to come off of Stelara see this post: Coming off Stelara
So here is what is going to happen. I'm going onto a trial of an JAK (Janus Kinase) Inhibitor, but I can't do this until I have a worse PASI/Psoriasis score for psoriasis and psoriatic arthritis
Yes I need to get more psoriasis!
After using Stelara for two years my skin was around 99% clear and I was coping with the psoriatic arthritis well, but now it's failing. so I have been given the option to continue with Stelara or go for the Trial. So I have gone for the Trial to see what happens. So if anyone has any experience of the JAK (Janus Kinase) Inhibitors I would be grateful.
At the moment I have a Psoriasis Score of 17 with plaques on the front of my lower legs, and the Psoriatic Arthritis is getting worse. So it's No Medication, No Creams, No Nothing. then an appointment with a Rheumatologist in two weeks time. Two weeks after that an appointment with the top dermatologist. If my score is high enough to commence the trial I will have more tests and start.
If my score has not gone up enough I will have to wait another month. then another and so on, till my score is high enough to start the trial. no one knows how long this will take to get my score higher, but at least I don't have to worry about what is causing my flare ups any more, and can eat, drink, and do what I like
Ever the optimist
I did ask what if my score gets better and actually goes down instead of going up! she said we will see. So I'm coming off any medication and lets see what happens.
I will keep this thread updated as I go on. but for now it's time for some Pizza and Wine.
So here is what is going to happen. I'm going onto a trial of an JAK (Janus Kinase) Inhibitor, but I can't do this until I have a worse PASI/Psoriasis score for psoriasis and psoriatic arthritis
Yes I need to get more psoriasis!After using Stelara for two years my skin was around 99% clear and I was coping with the psoriatic arthritis well, but now it's failing. so I have been given the option to continue with Stelara or go for the Trial. So I have gone for the Trial to see what happens. So if anyone has any experience of the JAK (Janus Kinase) Inhibitors I would be grateful.
At the moment I have a Psoriasis Score of 17 with plaques on the front of my lower legs, and the Psoriatic Arthritis is getting worse. So it's No Medication, No Creams, No Nothing. then an appointment with a Rheumatologist in two weeks time. Two weeks after that an appointment with the top dermatologist. If my score is high enough to commence the trial I will have more tests and start.
If my score has not gone up enough I will have to wait another month. then another and so on, till my score is high enough to start the trial. no one knows how long this will take to get my score higher, but at least I don't have to worry about what is causing my flare ups any more, and can eat, drink, and do what I like
Ever the optimist
I did ask what if my score gets better and actually goes down instead of going up! she said we will see. So I'm coming off any medication and lets see what happens. I will keep this thread updated as I go on. but for now it's time for some Pizza and Wine.