Where does your medication come from

[Bunty]

It looks very likely that I'll be self injecting adalimumab, and I was wondering how those in the UK who do this, get their medication.
Someone I know, who knows someone, who knows someone else..very vague ..says they have it delivered. By who? From where? What volume ie. a weeks worth, a months worth, three months??
I'm sure this will all be explained to me next week but in the meantime I wondered if anyone here could give me any information, and talk me through it from the beginning, I'd be really grateful
Bunty x

 

[Lisa]

Looks like you will be going on Humira - I have copied this over to the Humira section where you should be able to find out a lot of information - plus you can check the manufacturers' website -

https://www.humira.com/crohns

 

[Bunty]

Thank you Lisa.
I did have a read through the Humira section but didnt come across any answers to my particular questions. Maybe someone will be able to answer them now.
Bunty x

 

[Carrie]

I was on Humira very briefly when I lived in the UK. If I remember correctly, the consultant arranged to have the medicine delivered, and the also arranged a home health nurse to come over for a visit to get me started on the loading doses.

I think I had three months worth of medicine delivered.

This was more than four years ago, so it's possible things have changed since (or that I'm remembereping incorrectly!)!

As you're probably aware, the biggest hurdle is getting approved by your local trust to start Humira. Good luck, and I hope it does wonderful things for you!

 

[Kat123]

Hi Bunty,

The Humira gets delivered by a company called Alcura (at least mine does). Your hospital prescribes it and liaises with them directly, and they then contact you to arrange a time for delivery. You need to be in when it gets delivered as it comes with a cold pack and needs to be stored in the fridge. They will also arrange for a nurse to come to your home and teach you how to inject.

I get 2 month's supply at one time which is 2 boxes each with two pre-loaded pens in (i.e. one pen a fortnight). At first you will get more delivered, as there is a loading dose and then you go on to a maintenance dose.

The repeat prescriptions should happen automatically - i.e. the hospital liaises directly with the supplier, who then contacts you to arrange delivery. Once I had to chase it up with the hospital, but usually they are pretty on it.

Alcura also delivers a sharps box where you put the used pens, and when it's full you call them up to collect it. They can supply a mini-sharps box and a travel letter so that you can take the injections with you if you are going on holiday.

Hope this helps

 

[Bunty]

Gosh, thanks very much ladies, you've been really helpful and answered so many questions for me.
Kat, do you know if you can have it delivered to your local pharmacy if that's more convenient for you? Has it been the right decision for you, were you given the option of infliximab infusions at the hospital instead?
Thanks again
Bunty x

 

[Kat123]

As far as I know you have to get it delivered. I'm not sure but maybe you could get it delivered somewhere else like your workplace. It's fine out of the fridge for a while I think as long as you keep it in a cool box. They're pretty good, they phone up a few days later to check you've received it.

As far as convenience goes I think it was the right decision for me. The hospital only does the infusions on a weds afternoon, so there wouldn't be any flexibility if I was busy that day. The injection is quick and easy, and I've not found it to really hurt at all, though I know some people find it does.

I'm not really sure it's working for me- it's supposed to be helping close up a perianal fistula- but I'm getting an MRI scan in a few weeks so am waiting to see the result of that. I've been on it since March this year

Hope that helps. Feel free to ask any other questions. It sounds like a very daunting drug to go on but personally I've not had much by way of side effects.

 

[Bunty]

Thank you again Kat, you've been really helpful.
To be honest, I'll just be glad to be on something which has some effect on the crohns.. mines proving pretty resistant to pred.. and I know I need to be on something which does, I'm not currently on anything other than pred due to my liver not tolerating Aza.
The nurse told me over the phone that they're considering Humira or infliximab for me, and that it would be my choice, and like you I feel Humira would fit in better and be more convenient with my lifestyle.
I really hope the MRI scan you're due shows an improvement Kat, I have my fingers crossed for you.
Thanks again.
Bunty x

 

[Bunty]

I just thought of another couple of questions Kat
Do you have regular blood tests to monitor how you're tolerating it, and if so, how often do you have them?
Does your next batch of it come a day or so before you need to use it, or does it come as soon as you've used up your last batch?
Thank you.
Bunty x

 

[Kat123]

Thanks Bunty, I hope it shows an improvement too as next step would be more surgery (a LIFT procedure) to try to close up the fistula and I'm really not sure about that at all. So hard to make these decisions.

I am a bit irregular with my bloods at the moment as trying to find a dose of Azathioprine that doesn't make my white cells too low but still having an effect. What they told me originally for the Humira is to get bloods done after 2 weeks, then 2 weeks, then once a month for 3 months then every 3 months. I'm able to get mine done at my GP then send the results over to IBD nurse by email which works better for me. Also as the GP is prescribing the Aza they like to monitor it too.

The Humira tends to come before I've finished the last batch. There was once I had to chase as hospital hadn't ordered it, but even then it was well before I needed to take it. I guess I've only had 3 or 4 deliveries come to think of it, but it's worked fine so far!

Good luck with your appointment next week. I really hope the Humira works for you x

 

[Bunty]

I can't begin to imagine what a fistula must feel like, Kat, but I do hope it gets sorted, sounds awful.
Next weeks appointment has been cancelled as my IBD nurse is off sick. Unless they can rearrange all her appointments I doubt I'll see anyone now till 9th October, which will be the consultant.
I'm wavering a bit now between infusions at the hospital or self injecting, needs a lot of thought doesn't it?
Thanks again,
Bunty x

 

[Kat123]

Thank you. It isn't terrible in that it's not excruciating pain or anything now that the abscess is drained, but it is getting me down because it's just so ongoing. I was diagnosed with UC 15 years ago and was doing really well with minimal flare ups and meds, but then I got the perianal stuff 3 years ago and dx changed to Crohn's - started Aza, then surgery for drainage of abscess, now Humira and prospect of further surgery. I know it's a lot less than what many people are going through, but it's a lot more than what I had become accustomed to over the years.

So frustrating about your appointment. Can you ask for your clinic appointment to be brought forward if you are struggling and need to start on the new meds? It will be good to have a chance to discuss it with the consultant though if you're not sure of which option to go for.

 

[Bunty]

I'm going to call the flare line on Monday morning and hopefully get to speak to one of the nurses although I doubt I could get the clinic appointment brought forward, they seem inundated a the moment. The nurse told me this is the worst time of year for crohns for some reason.
I think we all think that there are many people so much worse than we are, but when you're struggling yourself that's not much help is it, especially when it's an ongoing thing with no end in sight.
I'm sure we'll both get there in the end Kat, one step at a time
Bunty x

 

[Kat123]

I didn't know that about the time of year. Good luck with it then.

Thanks for your kind and encouraging words