Anyone on Skyrizi?
Posted Sun 24 Apr 2022 21.51 by JamesFoster
I saw my Dermatologist on Friday. I am only PASI 7. But my plaques are on my face and scalp. I have been taking Methotrexate for 18 months but it is causing various side effects although it does help deal with PS. Anyway my Dr was going to try Humira. But that is out of the question because my sister has MS. So he applied for Skyrizi. It achieves PASI90 in 80% of patients. And the holy grail PASI100 (total clearance) in 60% of patients. So I had the chest X ray for TB. And will have blood tests for HIV, Hepatitis B and C and Herpes and Shingles tomorrow. Should I be all clear I will be on Skyrizi in June.
Anyone else on Skyrizi? Or competitor drugs like Taltz, Consentyx and Stelara. Interlukin blockers.
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Posted Mon 25 Apr 2022 17.56 by polar (edited Mon 25 Apr 2022 18.07 by polar)
I was planning to wait for a few weeks when I have more improvement to make this post as there is not a lot of post about the Skyrizi's experience. Since someone asked about, I will share how I did in week 3 of Skyrizi. :-)
I start seeing improvement to my skin in week 3 after the first injection. I was intermittently (about 3-4 days out of 14 days) using the enstilar and dovobet during the first two weeks.
I stopped the enstilar and dovobet at week 3 without the psoriasis rebounce. In the past, if I stopped the enstilar for more than 3-4 days, the scales will start appearing large scale sappearing and my skin will start feeling the pain. ( I still keep using Cetreban cream every day after showers to moisturise).
Week 3 now and my skin does improve a lot, No large peeling skin. I still have the red skin on my body and some faint pink colour on my forehead, but I can see they are getting better day after day. The skins that falling off is more like a fine dust due to the fryness instead of flakes now. And when I touch my skin, I can feel it is getting smoother. My nails also getting back close to normal since week 3.
I saw a website that about 6% of people achieve PASI90 at week 4, 44% of people achieve PASI90 by week 8, 76% of people achieve PASI90 by week 16 and 86% by week 52.
I did not have any side effects that mentioned in the leaflet so far. Hopefully it will still be the same after the second and subsequent doses (fingers crossed!!).
Everyone react to the medicine differently, don't gets too worry if it does not react at the first few weeks. As I got a bit nervous during the first two weeks as I cannot see any improvement and needed to use the steriod cream to feel better, it seems that my body start to react to Skyrizi in week three.
The injection was not as terrible as I imagined. They are now provided as a pen instead of the 2 x 75ml syringe needle. I injected it on my thigh and I could not feel the needle at all.
As I only started the Skyrizi three weeks ago, I will try to share more once I have it for longer.
Hope it helps. :-)
Posted Mon 25 Apr 2022 18.29 by JamesFoster
Thank you for sharing your experience. I also need to ask. As you know Psoriasis is an auto immune disease. So internally you must have been suffering fatigue, achy muscles, swelling and redness, trouble concentrating, low grade fever, numbness and tingling in your hands and feet at various time to varying severity. How does Skyrizi help you with these symptoms?.
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Posted Mon 25 Apr 2022 18.56 by polar
It seems to help me reduce the muscle pain as I did not have any muscle pain in the last few weeks.
With regard to the fatigue, it seems that I felt more tired during the first two weeks. Not sure if the body reacting to the injection, which made me tired. Now, it seems that I have more energy during the day and not as tired at night as before.
Redness start improving as skins are not as red as before. Apart these, I did not have other symptoms.
Posted Sat 30 Apr 2022 21.59 by JamesFoster
Polar I've just done the Chest Xray for TB and the blood work for TB, HIV, Hep B and C and other stuff. I see the dermatologist on the 10th June and his nurse the same day. They have completed the biologics form except for ticking the boxes that I've been tested and don't have the above diseases. How long does it take fom the forms to be approved? and then how long before HealthNet Healthcare (the company that Abbvie or the NHS pay to handle the logistics and provide customer support) deliver my first pen? In your experience. I'm so excited 32 years of PS is likely to be in the past. And I can enjoy a much brighter future.
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Posted Sun 1 May 2022 10.01 by polar
It took about a month from when the test results were ready to get a call from Homecare to confirm the delivery and visit from nurse to train me up. I was told it will take between 1-2 months for the delivery as once it is approved, they will send the request to the pharmacist, they will then pass to Homecare Team to arrange delivery and visit.
They delivered both the 1st and 2nd dose at the same time. You need to keep both pens in the fridge. They told me to put in the middle of the fridge to prevent it from frozen. I put them under the egg tray instead as I read from others that they did the same in case you accidentially push the boxes to the back of your fridge.
I understand how excited it will be as everytime when my phone rang, I thought it would be Homecare calling me while I was waiting for their first call.
Once you had a date for the nurse visit, write down all the questions that you have, if not, you will easily forget what to ask as they will go through the general points to note, instructions and you may feel excited and nervous to have to inject yourself.
I just had my second injection. Not get to PASI90 yet but I can feel that is going to that direction. Happy to share more hope will be useful to others will be/in the same treatment. :-)
Cheers
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Posted Fri 13 May 2022 10.20 by Aviar
Thank you everyone for the above. I am going through the process to have this treatment as well, after 27 years of other treatments only providing limited or temporary relief. Your experiences and advice have been very informative and helpful, and I am off to book my pre-tests.
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Posted Sat 14 May 2022 15.51 by polar
Aviar, hopefully you will get your injection soon. Love to share my experience. :-)
Hope more people using Skyrizi can share their experience and journey here. Though everyone react differently, at least it can give people some ideas of what they will / may go through.
I did the PASI calculation and it seems that I have somewhere around PASI80 in about week 5. Hopefully it will get even better when I have my appointment in two months time.
I will keep updating the progress. Cheers :-)
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Posted Sat 21 May 2022 12.35 by Ash
Hi all,
I’m also waiting for my first delivery of Skyrizi, it was approved two weeks ago so hoping to get that call from home care soon! Have you got yours yet James?
I was previously on Stelara and had a fabulous 100% clear five years with no side effects, before having to come off it last year due to unrelated health issues. My skin is flaring back up now so really hoping Skyrizi will do the job again. Fantastic to hear how well you’re doing Polar, I think it took me around six months to get to PASI 80 on Stelara so Skyrizi does seem to work quicker. I hope you get to the 100%!
Posted Mon 23 May 2022 20.38 by JamesFoster
Ash I'm not on Skyrizi yet. I've done all the blood tests and x rays. And my Dermatologist has filled in the forms. My next appointment is on the 10th June. with a specialist Dermatology nurse. I'm not sure what this appointment is for. Hopefully it will be to get my first dose and train me to use the pen and answer any questions about Skyrizi.
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Posted Wed 25 May 2022 18.14 by JamesFoster
Actually I got a phone call today to let me know my nurse appointment is to go through a health checkup and educate me about Skyrizi. And complete a portion of the biologics funding form. Then the form goes to the major local hospital pharmacy so they contact HeathNet or order the drug from Abbvie. Then it goes to some department in NHS England or the local clinical commissioning group that approves biologic drug funding for the final rubber stamp. Then HealthNet deliver the pen to me.
I'm not complaining. The List price of one 150mg pen of Skyrizi in the UK is £3,300 and $19,200 in the US. And there is an 60/40 or even 70/30 chance that it will fully heal me from this horrible disease.
So if I'm really lucky I'm get my first jab early July. Mid to late July is more realistic.
BTW I would encourage anyone in the UK with moderate to severe PS to try Methoxtrate. Read the reviews on drugs.com. And in any case in England if you refuse MTX the consultant cannot eventually put you on a very effective biologic like Skyrizi, Taltz or Consentyx. And folic acid tablets several days a week minimise side effects. And quarterly blood tests ensure your liver is OK.
Posted Thu 26 May 2022 17.32 by JamesFoster
Polar based on your experience do I think I might get Skyrizi in July? Also after 8 weeks have you reached PASI75 or PASI90?
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Posted Thu 26 May 2022 17.47 by polar (edited Thu 26 May 2022 17.47 by polar)
Hi James
Based on my own calculation, I think I achieved PASI75 at week 5. I only need to use the moisturizer now without the need of Enstilar or Dovobet.
By week 8 now, I would say I am very close to PASI90. I still have some slight pink colour patches on my legs, which was the most serious parts before the injection. But I can see it is improving, I think it takes time for the colour to disappear.
Hopefully you will have yours in July and will have benefits from the improvement before winter comes. Cheers :-)
Posted Sat 4 Jun 2022 03.54 by JamesFoster
Good news Polar. You are on track to get greater than PASI90. You are odds on you will achieve PASI100. But even PASI95 is a great result, compared to traditional treatments. Btw were on you Humira before you went on Skyrizi?
Posted Sat 4 Jun 2022 08.59 by polar
Hi James, thanks, it is what I am hoping to get to too. :-)
It is my first biologic treatment. When my dermatologist decided to prescribe biologic, Humira is the first one that he excluded.
Posted Sun 19 Jun 2022 02.13 by JamesFoster
Polar you are on week 11. You must be in the high 90s by now. My Dr and Nurse applied for funding for me on the 10th June. So I'm hoping to get the news the CCG has approved it soon. And then the Skyrizi will be ordered and delivered. I'm going for some x rays and scans of my feet and hands and lower back to test for Psoriatic Arthritis. But the beauty of Skyrizi is that it is the latest treatment for PsA and from today Crohns disease.
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Posted Fri 24 Jun 2022 07.58 by polar
Hi James, It is great that your dermolotogist submitted the application. My application was approved in less than a week as stated in the letter I received a few weeks later. Hopefully you could have your first injection in July. It does make a big difference as it was the first time I wore a shorts in 10+ years last week.
I think I am now close to PASI100 apart from where the psoriasis was still with a bit pink colour (similar to after having a sunburn). I think it needs time to get back to normal colour after all the Enstilar applied in the past. :-)
However, some rashes appears since the weekend after I did the gardening. Hopefully it is just allergic reaction from the some plants as I had no such reaction from the last two injection. Hope all these will disappear in my next appointment.
I can't wait to hear the good news from you after having your injection.
Cheers :-)
Posted Sat 25 Jun 2022 01.05 by JamesFoster
Thanks Polar. My application was approved on Monday by the clinical commissioning group and Skyrizi has been ordered by the pharmacy at Lister Hospital in Stevenage. Now the final step is for an appointment from a nurse at Alcura to deliver the Skyrizi to me and show me how to use it. Will they also deliver the second dose that is given at four weeks on that first appointment?
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Posted Mon 27 Jun 2022 09.12 by polar
That's great. Now is just waiting for them to dispatch the Skyrizi to you. :-)
My first and second dose was delivered at the same time with the medical sharps yellow box. Not sure if your area will be the same, I have to prepare the alcohol swabs pad and plaster before the injection.
It should also come with a booklet to tell you more about Skyrizi. It also have a section for you to record the date for your injection in the first two years with notes you can put in to record the recovery journey.
I would suggest writing down all your questions before the nurse visit. My nurse had been throught quite a bit of standard procedures and clauses before the actual injection and my questions. If your queries are not written down, you will easily forget them, especially with the excitment and nervousness before the injection.
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Posted Fri 1 Jul 2022 10.27 by JamesFoster
Polar just heared from Alcura I get my delivery next Thursday, I'm over the moon.
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