My psoriasis story, any advice on secukinumab.

Posted Sun 30 Oct 2016 15.22 by Marcia T

Hi everyone, I am new to the website and forums. I hope you are having a good a day as possible. My psoriasis history as brief as possible is my psoriasis began around 20 years ago with small plaques on elbows and knees, and in my ears. Then in 2008 I erupted with guttate psoriasis. I was given light treatment which I reacted extremely badly to. I ended up with full thickness burns, leading to infections and 5 months in bed and a month in hospital with so much damage to back of legs and knees it has affected my mobility with huge scars and has caused knock on problems with my back, feet, walking etc. I was put on methotrexate in 2010 which worked well for me, and have been taking it at 17.5mg for 6 years. All was well with occasional blip. Then all of a sudden early 2016 it started to creep back, medication was adjusted but it keeps spreading. I went to a special case clinic a month ago and the consultants decided to start me on a fairly new drug called SECUKINUMAB which I will inject myself every couple weeks I think. Firstly I had all kinds of blood tests and screening before it can begin, which brings me right up to date waiting for the results. I can no longer get dressed into my usual clothes, I can't bear the weight of the bedding on my body, I can't even walk out of the house across the street. I have been both bed ridden and housebound except for my husband taking me to various appointments. He has had to work part time to help care for me. I am so desperate for this new treatment to work. I wondered if any of you or anyone you know of is on this biological treatment? and if so any experiences you have or advice, what to expect, side effects etc would be much welcomed. I am a bit frightened to start something new but I am so desperate to feel well again. Thank you so much for reading, apologies for the long post.! Marcia x

Posted Sun 30 Oct 2016 16.21 by Lindsay

Hello Marcia, I was on the trial for this injection, I saw great results for the first 6 months all my dreams came true of being able to walk and walk on a beach bare foot without any pain or anybody staring. I have PPP on the soles of my feet and palms of my hands, my feet cleared up very quickly however it never went completely from my hands, I took weekly then monthly injections, the trial was for 12 months I was given the option to stay on the injection which I did but slowly the psoriasis eventually came back again covering the soles of my feet. So I'm back to square one hobberling around on very painful feet and trying to cover my hands so no one can see them. Good luck with your treatment I hope you get some relief. Lindsay X

Posted Sun 30 Oct 2016 20.55 by Marcia T

Hi Lindsay thank you so much for your reply. It's very reassuring to know that it helped you but I'm very sorry that your ppp returned after 6 months. It must be so painful for you, I'm lucky that apart from skin peeling my feet are clear on soles. Is there anything else you can try? Also how did they select people for the drug trial or did you volunteer? I wish you all the best, take care and thanks again xx

Posted Wed 18 Jan 2017 16.23 by DanielC
Had psoriasis since I was 17, now 50+

Hi Marcia I know it's been a couple of months since your post and I was wondering whether you were now taking SECUKINUMAB and how successful it's been? Because my dermatologist has offered me either that or Ustekinumab and wanted to see what peoples thoughts were. Thanks Daniel

Posted Thu 19 Jan 2017 18.44 by Marcia T

Hi Daniel, yes I have been taking the secukinumab now, I've just had my first monthly injection after the four weeks of loading dose. I did have to miss two weeks though due to being on antibiotics when the GP was worried the skin was infected. I have seen a slight improvement in some of the tiniest spots, but my psoriasis is very active and continues to spread, we take photos each week to compare. I had a check up on Tuesday and was told it's a very good drug but in some cases it can take longer to see results. They think I am still spreading as a reaction to having to stop the methotrexate two weeks before I was allowed to start the new treatment. I have not heard of the other drug you mention, but good luck with whichever one you decide to go with. Best wishes, Marcia

Posted Tue 31 Oct 2017 19.15 by Mjc82

Hello, I’ve been approved for Secukinumab and it’s been about 4 weeks since I got the ok from my Derm. Could you kindly tell me how long did it take you to be contacted by the Pharmaceutical company for delivery of the drug? Mike.

Posted Wed 1 Nov 2017 00.12 by Marcia T

Hi Mike, This is a bit of a guess, but I had many tests to be approved starting last Ocrober 2016. A nurse from Novartis company cane from soffits to Somerset (!) to show me how to usevtgebinjevtions. I had my first one Dec 4th 2016. The company delivered to medication sometime mid November I’d say. That was evolution homecwre. But now the hospital has changed contract to healthcare at Home who deliver monthly. Hope that helps? And I wish you all the very best with your treatment. - Marcia x

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