It is a good news!! I completely understand the excitment. :-)
Posted Sun 3 Jul 2022 02.47 by Collage1
Good morning folks, I’m new and found this site during a visit to the NISE site checking the details of Skyrizi. Having suffered with psoriasis for nearly 41 years and only recently, 16 years ago going onto the early biologics, my doctor has decided the army this new version of my last biologic was failing.
The process was very quick, bloods taken full screening, HIV, hepatitis AB etc. And other tests. Once all tests returned as negative the drug was approved and delivered within one week.
I took my first dose last Monday, and to my surprise I have returned to the worst date ever in 21 odd years. My entire body is 80 to 85% covered with red patches which are visible on the face, hands and anywhere else unclothed. I have read the research that states most patients see an improvement around the fourth week. I don’t think I can manage to the fourth week if my body continuously gets worse day in day out. I have been on many biologics including methotrexate (tablets) and must’ve worked well with the odd delay in results but I have entirely no faith in this new drug. Maybe, I’m entirely wrong and maybe I will notice improvements within the four week period but currently, I get worse every day resulting in applying creams, moisturiser to try and combat the red patches and flakes. I hope and pray it does work and very quickly as it is affecting my socialising where I’m actually embarrassed to leave home to even go shopping as I’ve noticed people stare blatantly at me. So folks, I hope they will update you in four weeks or so to say that it’s working miracles, fingers crossed.
Did you take Humira before? Or did you jump from Methotrexate to Skyrizi?I hope it starts working very soon.
1Posted Sun 3 Jul 2022 16.54 by JamesFoster (edited Sun 3 Jul 2022 16.54 by JamesFoster)
https://www.drugs.com/condition/psoriasis.html
Even if Skyrizi isn't for you there tons of other options: Taltz, Consentyx, Stelara, Otezla, Humira, Remicade, Enbrel, Tremyfa, Don't give up hope. Your Dr has chosen Skyrizi because you have a 62% chance of becoming totally clear and a 86% chance of becoming between 90 and 99% clear by 6 months.
We are unlucky we have faulty genes that trigger this auto immune disease. But we are very lucky we now have all these revolutionary biologic treatments. Only 20 years all the Dermatologist could give us was Methoxtrate and potent corticosteroid and things like coal tar, salicylic acid, dithranol, vitamin D analogues etc.
And another thing. People with psoariasis have always been marginalised particularly where the plaques are visible: face, scalp, hands, etc. We have historically been treated the same as Lepers.
Posted Sun 3 Jul 2022 18.12 by Collage1
Hi folks,
As I already mentioned I’ve been on many different biological treatments and way back PUVA etc.
Methotrexate
Etanercept
Ustekinumab * 2
Adalimumab
Fumeric Acid eaters
Secukinumab
And others
This is the first massive reaction to any biological treatment ever. I actually believe it’s more like a reaction to it.
My Psoriasis Area Severity Index (PASI): 3.6
Dermatology Life Quality Index (DLQI): 11/30 taken before the start of Skyrizi but I think I’d be 5/6 PASI today
Posted Sun 3 Jul 2022 18.28 by polar
Hi College1, I used the Enstilar in the first two to three weeks after I had the first injection as I could not see much improvment during that time. Not sure if it is caused by the gap between stopping the Enstilar/Dovobet and my body react to the biologic. I ended up using Enstilar and Dovobet during the first two weeks as I could not bear the redness and pain.
Have you spoken to your dermotologist or dermotology nurse about using Enstilar while you are waiting for the biologic to take effects? I started to see improvement in week 3 with occasionally use of Enstilar and Dovobet in the first two weeks.
Hopefully you are in the similar journey.
Posted Sun 3 Jul 2022 18.50 by Collage1
Hi,
Dovobet is a no as it reacts badly with me. I have used it in the past and it worked but suddenly, I my body rejected it and now as soon as it touches the skin, instant redness.
I’ve been living this nightmare for 40 odd years and was doing well until this new doctor, (never seen before due to covid and relocation) decided to take me off my last biological treatment - starting not to work as well. I pleaded with her to do what my old doctor had done in the past. Looked at what had worked, then put me back into that treatment. Once it was obvious that started not to work they would put me back onto the treatment before thus, only needing to change treatments every 2/3 years. This new doctor won’t do this do put me into this total disaster called Skyridi
Posted Sun 10 Jul 2022 20.12 by JamesFoster (edited Sun 10 Jul 2022 20.15 by JamesFoster)
Collage1 are you starting to get better with Skyrizi? What is your drug of choice? Was your previous treatment Consentyx? You have been on Skyrizi for about 40 days. You should be feeling better. Skyrizi is hyped as a wonder drug. 86% of us will experience at least a 90% improvement. But for some it doesn't help. Can you not call your dermatology helpline at your hospital? And request an emergency appointment.
Posted Thu 14 Jul 2022 16.02 by Ash
I finally had my first Skyrizi shot today! Really hoping that this works for me as well as Stelara did. Really hoping I start to see improvements as quickly as you did Polar.
Posted Thu 14 Jul 2022 16.19 by polar
Hi Ash, it is good to hear the experience from other using Skyrizi too. Hopefully you will get the improvement soon. :-)
And today was by coincidence when I finally had my first Skyrizi injection.
Posted Thu 14 Jul 2022 16.53 by Aviar
Great to hear, hope that it really helps you all. I have my final pre-screening next week and then it will be a waiting game. Unfortunately I recently had Covid which dramatically worsened my psoriasis in the space of a week, which was *interesting* to observe. So my hope is that when I start Skyrizi any improvements will surely be more obvious...?!
Posted Thu 14 Jul 2022 20.37 by Ash
I’ll race you to PASI 90 James :-) It’s only been <checks watch> about 12 hours, but so far so good, no injection site reaction or initial side effects and the pen is excellent, easy and painless.
And good luck with it Aviar as well. Is this your first biologic? I haven't had Covid but have certainly had worsening psoriasis after infections in the past, it seems when my immune system gets really wound up it makes it much worse. Conversely chemo cleared it right up, but I don’t really recommend that! Hopefully the skyrizi will calm down the autoimmune side and help everything to clear up for you.
Posted Thu 14 Jul 2022 20.39 by JamesFoster (edited Fri 15 Jul 2022 06.22 by JamesFoster)
You're on Ash. Hopefully we will reach PASI 100 since 60 % of those who take Skyrizi do,
Just thought I’d come back and update for those considering this medication. I took my second loading dose this morning, so 4 weeks since starting.
I continued to use steroids for the first ten days or so, but stopped completely two weeks ago and I haven’t had any flare up from stopping. I had a few days in the second week when my scalp went a bit mad, shedding really thick scales. I treated that with enstillar and sebco, and I think it was actually a sign of the treatment starting to work as it never recurred and was the start of real improvement.
Now, my scaling has almost completely gone, a few of the more stubborn patches have some light silver scale but most are completely flat. Still pink, but less angry red. My scalp was particularly bad, really painful and embarrassing, and that’s now 95% better. So I’d say I’m at PASI50 or better already, and definitely still improving. No side effects for me. So overall extremely happy!
Ash I am having the same experience. First dose was 4 weeks ago. Second one was today. All silver scales have disappeared. The red patches are turning pink. Some of them have gone. My joints and back feel much much better with no pain. And I am a lot less tired. And my muscles don't ache anymore. I would say I'm up to PASI75. I did use Sebco to remove residual scale on my scalp 3 times in week 1 and 2. Now my scalp is clear. There is small reddish patch that is shrinking almost by the day. Thank God for Skyrizi. I had given up on life. The pain, fatigue and ugly scales on my face and scalp crushed me. Now I am reborn.
Hi Ash and James
Congratulations to you both on the progress. Good time to start enjoying the sun with shorts!! :-)
I had my regular appointment on week 15. My psoriasis were almost completely gone way before that appointment. PASI 18 dropped down to 0.6.
I started to have a tiny bit of tiny thin rash roughly two months after the second dose. The nurse said that it is normal for some people that when they are close to the next injection, a tiny bit of rash may appear. To me, it does not bother me compared to how I was. It is not noticeable.
Two important things I was told were to get blood test and dermatologyist appointment every four months to ensure the funding continued to be approved. Not sure if it is the same in every NHS trust.
Yes, fantastic news for you both and fingers crossed it continues to work for you both.
I unfortunately, am not seeing the results others on this forum are seeing. I’m now around 11 weeks in and only a very slight improvement. Face has cleared to only a light pink colour but the remainder of the body is hit and miss. Some parts have gone pink but within a few days they’re back roaring red with vengeance. I’m hoping the doctor will remove me from the product soon, as it’s not working or producing the results I’ve had with other treatments.
I hate the thoughts of good dry, hot weather as I’m wearing a long sleeve shirts and trousers, due to the embarrassing red scales on the arms, legs and body. Oh fudge it’s crap some days :-;
Posted Mon 15 Aug 2022 17.05 by Lattinpace2338
Skyrizi is no longer working.
I had great results after the first three doses.
After the April 2022 injection, psoriasis came back after five weeks.
I waited to see the effect of the 5th injection on July 6th but I am not getting any significant improvements.
I am looking at another treatment.
Starter Doses:
Dose 1: Friday, September 24, 2021
Dose 2 Wednesday, October 27, 2021
4 doses a year
Dose 1: Wednesday, January 19, 2022
Dose 2: Wednesday, April 13, 2022
Dose 3: Wednesday, July 6th 2022
I have plaques of dry skin, itchy, crusty, cracks and bleeds on elbows, arms, back, legs, the palm of hands, and around the ears. This is affecting my quality of life.
Any one has a similar experience? Suggestions are welcome
I’m am so sorry to hear about your condition and the failure of the drug. I’m not seeing major results unlike, when I used other biological treatments. Think it’s a hit and miss for some.
Hopefully, your condition will improve but if not, get straight onto the phone with the hospital to get another treatment started. This horrible condition affects us all
In many different ways and folk don’t realise just how demoralised we can feel.
1
Posted Fri 1 Jul 2022 16.44 by polar