update on my psoriasis and cosentyx

[Marcia1966]

Hi again folks!    Sorry it's been a while since my last post, some of you asked me to update on my cosentyx treatment.

I had my first injection of the four weekly 'loading dose' back on December 5th.   I had the second and third week and my psoriasis was still rampaging away, I .   was bedridden with the whole of my back and sides covered, I am covered all over to some degree but can bear to lay on tummy at moment.   

On the Thursday that first week I was so red hot you could feel the heat a couple of feet away.   I was shaking, shivering, teeth chattering etc I think its called rigors??   Anyhow,  my husband took me to GP, this was just before Christmas and normally she said I would be admitted because she was worried about fluid loss, pain levels, and infection incase it was turning eyrothrodermic.  In the end it was decided I would be better off at home, and was given 2 weeks of a strong antibiotic but told I must go to hospital if things got worse.  I was using cool packs to keep the heat down and sooth things.  It has been truly horrendous with well over 60% body coverage.  

A few weeks on I have restarted my cosentyx, the consultant thinks it was another flare on top because I had to stop the methotrexate before starting the injections.   I have now had my first monthly jab.   We are taking weekly photographs to compare any changes.   I am still housebound but not bedridden, I can wear super soft clothes, but I still can't do much,  I tire so easily and drink an awful lot.   My skin today looks possibly slightly less angry, we are in a routine of using Epiderm or Hydromol ointment (yuk its like spreading on lard!)  which is better than the cream as I don't dry out as quick and my husband can now leave me for three hours while he works.  But when he gets home and I am greased all over again, I scream in pain and want to go to bed to shut the world out.  I find listening to talking books calms me down, and I usually fall asleep then come downstairs a couple hours later.  Its a never ending cycle right now but hopefully things will show improvement soon, 

I've moaned on a lot today so will say bye for now and hope everyone is having a good day.            

Marcia

[Fred]

Hello Marcia, you are welcome to start new threads but for updates to your ongoing treatment I would suggest making a new post in your existing thread My cosentyx story as it could end up getting confusing. Also it will make it easier for you and those following to find your updates al in one place.

It's your choice though at the end of the day, and I hope it soon starts giving you some better results.

[Marcia1966]

Hi Fred,  I am sorry to have posted in the wrong thread again, I am finding forums a new confusing experience and I have read the threads on it but somehow still get it wrong!  certainly I do not wish to confuse anybody, I have tried to delete without success...I don't know how to move it either,  I wonder if anyone read it they might realise it should follow on from my original post.  I will read up on how to do things properly again, thing is I cant concentrate and tend to forget quickly, please accept my apologies.    I am so pleased to have found this site, Its great.  
best wishes Marcia

[jiml]

Hi Marcia my heart goes out to you, it sounds as if you are still having a terrible time and nothing I can say will make it better, but knowing that there are people out here reading your story and empathising with your predicament might give you some comfort

I sincerely hope that Cosentyx works for you soon and you will be able to get your life back to some form of normality....
Never worry about coming here to moan about your condition or your treatment, you have more reasons than most to moan and this is a great platform to moan on, I can understand with the pain you are in it must be difficult to concentrate, but I found your posts easy to read, and thank you for sharing your story  

[Caroline]

Marcia,
Apologies accepted and you have never to do that anymore. We all understand the situation you are in so we don't care that you make small mistakes that is no problem.
Being for the first time on a forum can be confusing,

Certainly I hope that the Cosentyx will start working quickly for you, out of your story it is very clear that you really need that.
I will send you some Reiki energy, you never know if that will help.


Caroline

[Fred]

Hi Fred,  I am sorry to have posted in the wrong thread again, I am finding forums a new confusing experience and I have read the threads on it but somehow still get it wrong!  certainly I do not wish to confuse anybody, I have tried to delete without success...I don't know how to move it either,  I wonder if anyone read it they might realise it should follow on from my original post.  I will read up on how to do things properly again, thing is I cant concentrate and tend to forget quickly, please accept my apologies.    I am so pleased to have found this site, Its great.  
best wishes Marcia

No you're not posting in the wrong thread as such. You are welcome to start as many threads as you like, but it would help you and your readers to keep your updates in one thread. You don't have to apologise as you have done nothing wrong, I was suggesting that if you posted updates on your original thread you will get more answers and those following will be able to find your updates.

We are very pleased to have you here and appreciate you taking the time to give updates as you information could help others, so again there is no need to apologise.

Your original thread about your treatment had over 400 visits and some people would be following it, but now you have a new thread for an update a lot of people could miss the update, also it would help you find your own progress later if you needed to.

I can suggest the following options, but it's your choice.

#1 I can put all the posts from this thread (merge) to My cosentyx story

#2 I can close My cosentyx story and add a link to this thread and you can carry on here.

#3 I can leave both threads open.

I appreciate that some members find it difficult to get used to finding their way around, but we are here to help you so don't let it worry you. We want our members to be happy and we are more than happy to help them.

If you ever feel unsure please don't hesitate to post somewhere as our active members will offer their help, or you can always contact one of our Staff

Sorry I'm going off topic on your thread, but I want to make sure you are happy.

[jiml]

Hi Marcia I noticed you're thread again today and it got me wondering ....is the Cosentyx making a difference as in your last post you were in a lot of pain and spreading on creams to moisturise, as well as your Cosentyx I would be very interested to know if the Cosentyx has begun to work its magic yet ?
Jim