Will Stelara be the one?

[Grumpy]

Haven't visited the forum for a while now. I've since started treatment on Stelara and thought I'd start a treatment diary.

For some background to my case, have a look here:

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I do waffle on a bit, so in short, I've had psoriasis for over 10 years now and it's gradually gotten worse and worse to the point that I now have extensive coverage pretty much all over and it's recently moved to my feet, hands, neck and face too. I've been signed off on sick leave by my doc and been fast-tracked onto Stelara, although that still meant I was waiting for over a month.

MedCo (the company that provides the Homecare Service for Janssen, the manufacturers of Stelara) eventually phoned me and arranged a delivery for Wednesday 30 November. They deliver the Stelara to your door and are fairly flexible when it comes to delivery slots, but it's a supermarket-style 2 hour delivery slot that you choose. Someone has to be in to receive the delivery as it has to go straight into the fridge, but you can have it delivered to an alternative address if necessary.

It wasn't until the following week that I got a call from the MedCo nurse who is meant to come and administer the injection. All the delays and the waiting in between are basically all down to paperwork, from the point you are recommended for Stelara to when you actually get jabbed with it!

Anyway, the nurse came on 8 December and was here for about half an hour, but subsequent visits will take much less time, as on this occasion, she spent a fair bit of time talking with me and explaining various things. You're supposed to take the Stelara syringe out of the fridge about 30 mins before the injection, then it's a fairly straightforward jab into the skin (it's a subcutaneous injection) and a couple of seconds while the syringe is pushed down to empty it. The needle is minuscule and I honestly could not feel anything at all! The only thing is it's preferable to inject into a clear patch of skin with no psoriasis, in the upper arms, thighs or stomach area, which proved a little difficult for me, but we eventually found a small clear patch!

So it's been just over a week now since my injection. First thing to note is that I've had no side effects whatsover!    I had been prepared for headaches or tiredness, but all seems fine so far. Don't know yet about any reduced resistance to infections, but I'm staying well clear of anybody who so much as sneezes or coughs! Will be looking into getting a flu jab, which the dermatology nurse recommended.

No improvement to the psoriasis so far, but I didn't really expect to see anything happening till at least after 3 or 4 weeks. Stelara is apparently quite a slow-acting and gradual treatment. I've noticed some people on this forum didn't see any results till some weeks after the second injection, i.e. 6-8 weeks. The dosage schedule is one dose, then second dose 1 month later, then every 12 weeks.

My second dose is due on 4 January. Will update this thread with any progress. Fingers crossed!

[lilactime]

i do hope it goes well for you !

[John Boy]

mine get's delivered the same way 2 hr slot is fine better then waiting all day for you phone to get sorted by virgin 

you have not put are you on 45mg or 90mg 12 weeks or 8 weeks injections

mine is working well for P but not for PA

once the second jab at week 4 will give you a bigger boost

then again at week 12

mine got changed to every 8 weeks due to it starting to fail at week 7 to 8
mine is 90mg

and have seen some at the hospital with the 45mg dose not to work as fast

lets hope this will help you

i am also tacking Mtx 10mg weekly to help the Stelara that extra push 

John

[Grumpy]

Thanks lilactime & John Boy!

John Boy, I'm on 45mg and after the 2nd dose it'll be every 12 weeks.

And you're right, the delivery service is pretty convenient. Being treated at home and not having to go into the hospital is a bonus too. It seems like I'm moaning a bit about MedCo, but I should point out that other than the initial waiting for them to process the paperwork, everyone I've dealt with has been really helpful and nice, from the admin coordinator on the phone to the delivery driver to the nurse. Now that I'm in their system and I have a regular nurse assigned to me, it all seems to be very efficient, and you can either phone up the Homecare Service or the nurse if there are any problems. 

[Panch]

I had my 6 month shot 3 weeks back. Earlier I had about 75% clearance. In the 5th month my P increased going back to around 50% including scalp. Now it is starting to improve. Not sure now if I will ever get to near 100%

[John Boy]

I had my 6 month shot 3 weeks back. Earlier I had about 75% clearance. In the 5th month my P increased going back to around 50% including scalp. Now it is starting to improve. Not sure now if I will ever get to near 100%

it's still early days for you
i Started mine Oct/09 and had to have mine changed to every 8 weeks
it's a trend on the lower dose 45mg it's just not enough as mine on the 90mg shot
you have to be 100kg to get the 90mg shot so if you are near this weight level stick some weight on 
i met with someone at the hospital that was around 90kg and the 45mg shot did nothing at all and ended up having day care
Mtx combo like i am on might help to but you will need to give stelara a while longer
i am not 100% clear but to see me now and how i was before Stelara i was a mess having loads of day care for months
so hope that you can find a level with your derm that will help you
Ps it may be cold out side but still having my T shirt's on to show off my arms 

[Panch]

I am only 75kg.  Will give some more time and see. Came across this article which may explain.

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[John Boy]

I am only 75kg.  Will give some more time and see. Came across this article which may explain.

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great read have just started going in to my third year and working well at 90mg but having it done at week 8 and not the 12 weeks

[Grumpy]

Well, it's been 2 weeks now since my first injection and no real change yet. Skin still red, still shedding and itching, but possibly slightly less than normal. Difficult to tell if the Stelara's having any effect, but am remaining hopeful.

Wish everyone here a merry Christmas! 

[Grumpy]

3 weeks since first injection and I think that possibly...just possibly there is some improvement! Skin seems slightly less red in places, plaques in some places seem to be thinning slightly, there appears to be less shedding than normal and itching seems to be somewhat reduced, although still occasional bouts of intense itching.

Plaques are still very well-defined though and still relatively thick in places, and there are no areas where there has been complete clearance.

I still cannot say with 100% certainty though that the Stelara is definitely working, but perhaps it's more to do with my not wanting to get my hopes up too much. Am due for the second initial dose (taken after 1 month, after which it will be every 3 months) on 4 Jan, so hopefully that'll give it a boost and perhaps then we'll know for sure whether it really is working or not.

Happy New Year all! Hope all of you can see some improvement and can get some relief in 2012!