How long to get authorisation for biologicals?

[littlemissh]

A question for people with experience of the UK.
My GP rang and it looks as though I may be heading towards the biologicals as my white cell counts is really low on aza, even lower since I reduced the dose beacause of low counts a few weeks ago to 75mg, which is weird. Since the reduced dose my symptoms are worse with a lot of melaena, pain etc etc.

I have to ring my GI tomorrow as the lab has recommended I stop aza or reduce further. My options are increase pred again...been on since october now or go for alternative.

My question is this - how long did it take for you to get authorisation for the biologicals...assuming this is what he recommends. I wonder if he will go for infliximab or adaluminab...if either.
Really didn't want to go this way but not sure what else he will be able to suggest.

 

[IAmTheWalrus]

I'm from Ireland, but I assume it works similar, HSE here and NHS in the UK, but I went to see my GI on Friday just gone, she recommended Humira for my fistula and Crohn's, she gave the prescription, I dropped it down to my local chemist, they rang me this morning to let me know it was in the fridge waiting for me and to collect whenever my IBD nurse calls to have it administered, so all in all it took me 5 days.

I was shocked it was so quick TBH. :/

 

[beth]

It's a bit different in England. Your consultant has to apply to the PCT giving them your history/etc, which in my case didn't seem to take long, about a week I think, and was a pretty forgone conclusion that I'd be approved.

You also need to be tested for latent, or active!, TB/hep/etc.

I'm biased towards Humira/Adalimumab.

Then the consultant writes the prescription and fax's it to Healthcare at Home who telephones you to ask when you're in, and they deliver it in a fridge-van.

 

[IAmTheWalrus]

I've being tested for so many things the past couple of months, blood tests primarily and of course an X-Ray just recently on the chest.

 

[littlemissh]

Thanks. Doesn't look like too long a wait, i had visions of being treatmentless for ages whilst they waited for the next panel review.
Just need to see what he says today - assuming he gets back to me today....he is normally very good though.

I am hoping he may suggest temporary pred increase and trial of increased aza again in a short while, because I am used to aza and felt well on it at the higher dose.

 

[beth]

There are no guarantees it'll be quick, of course! Anyway, aza is a good drug if it does the trick and leaves you with the nuclear option for later.

 

[littlemissh]

Just spoken to ibd nurse as gi not available until tomorrow. She wants me to go in as my hb only 82 and white count low etc etc
I have said I don't want to...only just got out after 4 weeks. If i am to get an infection anywhere it will be in hospital. She is going to speak with him first thing...if he agrees then I will have to go, but hoping he will just increase pred etc.

 

[Mark63]

Hi,

Short answer is it took about 3 months to get Infliximab approved. When that failed it took about 6 months to get Humira. They stopped the funding for the Humira after 3 months. Had to change Hospital/Consultant and re-apply, so it took about 9 months that time! Currently on weekly Humira, sush don't tell my PCT, the Hospital didn't get approval before upping the dose!

I think they can give Infliximab as a rescue treatment in Hospital without having to get funding. The problem comes when you need on going maintenance.

Hope they find something to help you soon.

Mark

 

[littlemissh]

Well he went for the temporary aza reduction and Pred increase. As long as bloods stable or better tomorrow and no more bleeds I remain a free woman !!
Possible methotrexate if my white cells continue to misbehave.
Pleased with this, just hope the Pred works quickly.