Starting Stelara

[Amy]

Hi all,

As suggested by Fred I have started my very first thread on a forum! Eeeek!

After 2 doses of MTX and a horrible reaction I got my first dose of Stelara last Thursday - the injection was a doddle and my nurse was lovely!

Its too early to now anythign really but so far no nasty side effects and I think theres a change, my right arm was a favourite picking spot and would be an area that the psoriasis came back daily, but i noticed yesterday that the skin I picked hasnt come back thick enough to pick since before the weekend.

Sorry - that description sounds terrible but not sure how else to explain what I mean. I did take some pictures on the day of the injections so hope that helps me monitor how it goes. I think my comfort eating has decreased but thats maybe cos my wine intake has increased due to work being utter pants!

Fingers crossed peeps!

[Fred]

Hello Amy, well done.

I hope it works for you as good as it has been to me, it has given me my life back. Great to hear the injection went ok and like I said to you, they will make sure your ok with it before letting you go it alone.

You may be pleasantly surprised, I noticed a change within a week. Mind I was bad when I first started it 3 years ago, and by the time of my second shot the flakes were fading and it wasn't so sore.

Thanks for sharing, and please keep this thread updated as it will be valuable to others. And I for one shall be following your progress with interest.

PS I hope you don't mind but I will change your topic heading to Starting Stelara as we have a lot of Stelara threads and it will help with Google search.

Fred.

[Amy]

Thanks Fred,

Kinda hoped someone would suggest a better title, I had no idea what to call it! Lol.

I think my score is mid 40's but I'm not totally sure.

Any improvement is better than nothing!

[Fred]

I think my score is mid 40's but I'm not totally sure.

I don't know if you're referring to the PASI score that your dermatologist uses or the one I made, but it does help to keep a track of it, and even a drop of 1 will cheer you up no end.

As a member of Psoriasis Club you have a personal notepad which is handy for keeping track of things, See Here: Personal Notepad

And if you are using the one I made Psoriasis Score in the menu bar above you can also add that score to your profile if you wish then you won't forget.

[Amy]

I was referring to score from my dermatologist, I'm going to ask when I see him next as your spot on that a 1 point drop will make a difference to my mind set!

Do feel more positive about my psoriasis since last week

[Fred]

I was referring to score from my dermatologist

OK That's the (PASI) What is the PASI score my dermatologist uses ? It's widely used in many countries by professionals as the standard way of keeping track of a patients psoriasis.

The one on the forum Psoriasis Score is the one I made. The reason I made it was, I found the PASI to complicated and all I wanted was a simple way to follow my own progress.  

You can use what ever you like, but your dermatologist will always use the PASI and probably use it with the (DLQI) Dermatology Life Quality Index (DLQI)

And you thought just having psoriasis was bad enough, just keeping a score of it can wind me up to the point of a flare up. Hence the one on Psoriasis Club.

[Amy]

Brain melt down........

[Fred]

Brain melt down........

Sorry gone a bit off topic there and forgot you are new to forums, probably to much information at once. Just go with what your happy with, but do make a note of it somewhere and stick to same one.

[Amy]

Will do

Melt down with scores were not helped by faiure of IT at work at the same time! Lol

[Amy]

Hi all,

Looking for some advice, its been 3 weeks since first injection and now I'm full of cold, its happened all of a sudden and all the usual lemsip drugs etc that I would normally take arnt helping.

Could this be anything to do with stelara or is it more likely than I've been unlucky?