My cosentyx story

[Marcia1966]

  Hi all.   I am waiting for a nurse to arrive from Oxford ( I am in Somerset) to give me training on how to use cosentyx, it will be my first injection today after an incredibly long wait.  I feel very anxious. She should be here within the hour and I have taken the syringes out if the fridge.  Please wish me luck!   

I first had psoriasis about 20 years ago, in my ears, which developed into chronic plaque psoriasis over time.   I have tried many treatments, all the usual creams and moisturisers. Light therapy, acitretin, methotrexate for past 6 years and it stopped working about 6  onths ago.

My worst time ever came in 2008.     I had phototherapy with such a bad reaction resulting in third degree burns after (5 low dose treatments)  I was extremely ill when everywhere got infected,  bedridden and then hospitalised. Housebound for 5 months.   ( the consultant I was under threatened me not to take legal action - there was suspicion that the nurse set the machine wrong, we did later take legal action ) anyway, the outcome was It left me in a wheelchair for a year with severely damaged and scarred backs of both legs. I still cannot walk far and still need a wheelchair. 

I changed hospitals and was started on methotrexate which has kept thing mainly in check with occasional blips.  This year I have another serious outbreak which has led to me being started on the cosentyx.  I have been housebound since August, and can only wear very very soft clothes.  As you will all know, the pain and soreness can be unbearable especially when completely covered in psoriasis.  The wired thing is that this time my outbreak was the guttate type, she had then all joined up to make huge areas like the plaques.  

I have a wonderful husband   who helps me, and some lovely neighbours and friends.   I often wonder what would of happened to me without their help. I feel very lucky.   I am so glad to have found this group, everyone is very friendly.  I no longer feel alone with others who understand.

Thank you for taking the time to read my post, you all have a good day 

[Grizzly Bear]

Oxford ?  


Good luck Marcia, fingers crossed for you  

My god, they burnt you with the phototherapy ???? Bloody nora  

I hope it wasn't the clowns at taunton ?  



No, you are not alone Marcia, we regulars on here are nearly like an online family, looking out for each other etc etc.........except Fred, he always picks on me  

[Fred]

Don't be too anxious about the injections they are simple and only go just under the skin. Cosentyx is a very good treatment so you will soon see results.

Did they tell you to take it out of the fridge an hour before the nurse arrives? Usually 15 mins to 1/2 hour is enough time, just make sure it doesn't get warm.

I noticed you have started this thread in "Members Photos" did you intend to do that or would you rather it be in Prescribed Treatments For Psoriasis ? It's your choice and it can stay here.

Good luck with your first shot.

[jiml]

Hi Marcia and   to the club, I'm glad you have found us and you never need to be alone with this disease while we are here.

We are all just like you and sufferers of this disease and we come to share experiences with others that understand, families are a great support, but it's good to have a place where you can talk with fellow sufferers

You certainly have not had a good experience with the phototherapy ,it sounds as if they microwaved you  

It's certainly messed you up big time, but hopefully the new drug Cosentyx will be successful for you and give you clearance, the members experiences I have read have all been positive and it seems to work quite fast as well

Have a good look around the site we are often here in the off topic section, where if you want to join in any of the threads like the chatting thread, photos, or any of the other threads, comments are welcome on any of the threads. We are all very friendly so just join in if you feel inclined I can guarantee you a warm welcome  

Jim

[Marcia1966]

Thank you everyone, you are all so friendly, kind and encouraging. I'm so glad to be in here.

No I had not meant to post in the wrong place. Oops! Am still finding my way around the site.  Yes it would've better perhaps in the treatment thread.  

The nurse was lovely and the injections were easy to learn and administer.   Only worry is I had a slight reaction 15 minutes later where I felt tightness in my throat.  Sounds worse than it is, I've had it several times with various things, and it goes quickly with an anti histamine. Happened first with a Tesco strawberry trifle!  But the nurse had to report it otherwise she'd not be doing her job.   I hope I'll be allowed to continue.  

Thank you all for such a lovely welcome to the group   xx

[Caroline]

Hi Marcia,

Welcome to Psoriasis club.
That is quite a history you have. You weren't very lucky with your treatments and the mistakes that were mad, unfortunately that you are in a wheelchair right now. Is there a view of ever coming out?
Let the Cosentyx do its work, it is a very good drug.

Cheers,
Caroline

[Kat]

Hi Marcia and welcome!

Mine started in my ears as well and it wasn't until it started appearing in other places that they diagnosed me with psoriasis. Oh my, your light treatment sounds horrid! There is no reason at all you should have had to go through that!!!

I hope Cosentyx works well for you and you see results soon. There's lots of info to be found here and lots of support.

[Fred]

Hello Marcia I have moved this thread to Prescribed Treatments For Psoriasis for you.

Don't worry about finding your way around, there is always some available to help you settle in. If you do need any help you can contact one of our Forum Helpers

Good to hear the shots went well, once you get used to them they are easy. Re the tightness in the throat I wonder in this case it could be an anxiety thing? Bit it sounds like you have a good nurse and I'm sure you will be allowed to continue.

Good luck I look forward to your updates.

Fred.

[Bill]

Welcome, Marcia. You shouldn't burn with light therapy unless there is a major screwup. Nasty bugs are also endemic in most hospitals, and burns present a serious infection risk. What a pack of clowns! Cosentyx seems a really good treatment and is very difficult to screw up with. Most patients tend to clear within a few months.

All the best,

Bill

[Marcia1966]

Hello Grizzly Bear thank you for your reply,  I'm sorry it has taken me a while to reply.  I continue to be very unwell, and am finding everything difficult.
In answer to your question, no it wasn't Taunton fried me in the UV in was Dorchester, actually Bridport community hospital, that was in 2008, so a while ago but has had such a huge impact on my life ever since.  We did try taking legal action, and in the end it did not go to court because it couldn't be proven that mistakes were made.  Although Yeovil is my nearest hospital I had chosen Dorchester because it was a much quicker waiting list.  

I hope you are having a good day

best wishes, Marcia