Otezla

Posted Wed 12 Mar 2025 13.58 by Chris7319

Hi all I have been on aciterin for about a year it's not really working for me. So I have been moved on to otezla has anyone had any experience with this? Any side effects that I should know about? I am waiting for the hospital to call me with this information.

Posted Fri 14 Mar 2025 15.03 by Victoriab

Hi. I’ve been advised to try this medication as my liver didn’t tolerate methotrexate (I’m waiting for a liver scan), so am interested as well to see other people’s opinion of this treatment.

Posted Mon 17 Mar 2025 10.35 by leejacks

I took it a few years ago, unfortunately wasn't in a position to tolerate the side effects so wasn't on it long enough to judge if it was effective. The side effects I got were diarrhea, nausea and blinding headaches. It was the headaches that I couldn't tolerate. Not everyone gets these side effects so I would definitely give it a try, plenty of people have said it clears their psorasis almost completely.

Posted Wed 9 Apr 2025 20.37 by Chris7319 (edited Wed 9 Apr 2025 20.38 by Chris7319)

Hi thought I would give a 7 day update. I am now up to 30mg twice daily so far, without being gross I have loose stools first thing in the morning not diarrhoea just loose apart from that I feel great the redness is fading I am not as scaley obviously I haven't given it enough time but 1 week in so far so good.

Posted Fri 18 Apr 2025 17.54 by Chris7319

So I'm about 2 weeks in now, and my scalp has virtually cleared up for the first time in years. I have had a cold this week. I'm not sure if it is related to Otezla; I know it can cause a cold. I have had a few headaches this week, not too serious, just a headache, and I have had awful trouble staying asleep. I have been waking up at 3am and not being able to get back to sleep, so work has been fun this week. Again, I'm not sure if it is related, but before this, I would go to sleep at 10pm most nights and wake up at 6am with no issues.

Posted Sat 26 Apr 2025 11.00 by Martyka_95
Spaniard navigating the UK weather

Hi Chris, Been prescribed Oztela by my dermatologist. How are you getting on? Is it worthy?

Posted Tue 29 Apr 2025 20.26 by Chris7319

It's OK. I am definitely improving; my psoriasis looks better. I had it quite bad on my back and around my sides; it's getting better. It's not itchy anymore, not as red either. My side effects are pretty much completely gone. I am not even a month in yet so pretty pleased

Posted Wed 30 Apr 2025 12.01 by Martyka_95
Spaniard navigating the UK weather

That's great, please keep us posted. I will start whithin the next couple of weeks too once my bloods have been done, I will also update my progress. Fingers crossed not much side effects All I have heard with Oztela is not good so

Posted Sun 4 May 2025 06.56 by Chris7319

It's always a worry starting something new, but I can say most side effects only last a couple of weeks anyway. The only problem I am going to have is actually getting the otezla as my hospital are beyond crap at prescriptions. They told me when I was taking acitretin u can not run out if this drug I would chase the hospital for 2 weeks phoning daily. Then I would run out completley and get a script a few weeks after its a joke same thIng will happen here.

Posted Sun 4 May 2025 18.30 by Martyka_95
Spaniard navigating the UK weather

I am not surprised, that's something I am also scared of. I have seen cancer patients running off medications and not getting them on time, as psoriasis (and other conditions) are not deadly we are literally treated as 3rd class. They aren't even aware of a 1/4 of struggles we have to endure. I am so sick of people telling me that it's just a skin issue. It is not, it is a medical complex issue, bed sheets covered in blood, people looking weirdly at you in public transport, and genuelly a huge mental battle!. It is not some teenagers spots on the face due to hormons, mad x

Posted Sun 4 May 2025 18.44 by Chris7319

Completely agree with everything you have said. Last week was super hot where I work, and I am still in trousers and a long-sleeve t-shirt. I constantly get asked, Are you not hot? Yep, extremely, but I just have to make it work and suffer through. Even on holiday I wear long sleeves and trousers or jeans everywhere. Hopefully in a few more weeks I will be more clear, but psoriasis has a way about it. I even have to travel 15 miles from where I live to get a hair cut as the place I found really don't mind my scalp psoraisis I had an awful experience a few years ago in a barbers near me he was mouthing in the mirror constantly this is disgusting he must have said about 50 times I literally left the money on the counter and just ran home it was the most unprofessional place I have ever been. I can't even walk past it still to this day.

Posted Sun 4 May 2025 21.19 by Martyka_95
Spaniard navigating the UK weather

I am so sorry you had to go through that at your hairs dressers. I did discuss it with my salon before I went in, they are huge & all of the girls were super nice with me, even one of my stylist had psoriasis herself. I was so devastated that when I left I had a tear on my eye because I thought they would just kick me out or put bad faces. I am lucky that the one on my chest & arms has fade with the sun but my scalp one is purely plaques, thick & yellow. All the back of my ears are bleeding and peeling 24/7, even inside. Been on cortisone on and off and since reading about topical steroid withdraw online and people suffering it, It really made me go for Oztela. My cousin has psoriasis on his face and regularly applied cortisone potency 1 for years without asking anyone, he is fine but what can I say? Lucky? What would happen if he would ever stop..? Would he get TSW? It does sucks we can only "treat it" and not cure it, helpless. On the other side I am happy to know that I am not alone 💖

Posted Sat 10 May 2025 21.56 by Chris7319

So I am 6 weeks in, and to be honest, I am trying to stay positive, but when I look back over my time with acitretin, I am probably at the same level I was with that. My guatte is flatter but still red. I am not itchy at all now, but I was hoping to be more clear than I am. My scalp is my biggest improvement. I have a small patch behind my ear, which I manage with Enstillar. It does say this drug is at its most effective in the 12- to 16 weeks stage. So hopefully I will be better. I am praying to be better, especially the bottom of my ankles, so I can wear 3/4 lengths on holiday at the end of June.

Posted Sun 11 May 2025 13.42 by Martyka_95
Spaniard navigating the UK weather

Chris, I haven't started yet cause my bloods didn't come back quite right so they need to check further. I am barely copying at the moment tbh but just trying to be positive that once I am back on holidays in 2 weeks they can put me in. I have read the same, it does gets more effective at 4 months, 6 weeks is barely a month and half. The fact u don't have the main side effects is also positive. I try to hold myself that whatever I get it's best that living with this as long as I don't spend my time nauseous etc.. I am not even worried about the looks of it anymore, just want to be able to sleep and not itch & bleed. I was offered ciclosporine but no point since is only short term and I get the feeling mine is not a flare but just it came to stay. Have you tried methotrexate? I think methotrexate does alter ur entire inmune system but Oztela doesn't. You got to try everything before biologics, that's my approach at least.

Posted Sun 11 May 2025 14.11 by Chris7319

Hi, martyka. Unfortunately, I have a hiatal hernia, and I can't take methotrexate as it reacts with pantoprazole. Yeah, trying to stay positive, but like all of us, we have a degree of wanting it to work fast. I am still hopeful.

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