More waiting for Enbrel: Had a hospital appointment for... - NRAS

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More waiting for Enbrel

cathie profile image
19 Replies

Had a hospital appointment for what I hoped would be to get me started on Enbrel. Sadly however it was another box-ticking exercise and I still have to wait - about two weeks to get it. I think this must be the last phase, but it doesn't help much.

two interesting things, I was offered the choice of an injecting pen or proper needle. And I was told to stay on pred until the enbrel is established. Not too happy about this as its messing up my diabetes, but there you go.

So what a waiting game!

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cathie profile image
cathie
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19 Replies
Crazyjo profile image
Crazyjo

Ah Cathie that's annoying, let's hope once you start it that it kicks in quick, I am waiting for simponi at mo and know be at least 4-6 weeks before actually get the drug. Keep your chin up x

cathie profile image
cathie

It helps when they tell you doesn't it! I hope your simponi comes soon though!

allanah profile image
allanah

Doh, so frustrating , hope you are not too disappointed xx

cathie profile image
cathie

another xxx days with restricted life… its like starting all over again. but at least I have you lot on the forum.

Chappy1 profile image
Chappy1

Sorry to hear this Cathie. It's two steps forward and one back all the time isn't it?

Bazzypants profile image
Bazzypants

Hi Cathie, sorry you have come away disappointed today. Hope you get it all sorted soon. xx

julie_warwick profile image
julie_warwick

frustrating isn't it , I am waiting to start cimzia and was told it would be a couple of weeks , ( 2 weeks ago ! ) still waiting , I guess the bank holiday hasn't helped , feels like forever when you are waiting , I sympathise. x

cathie profile image
cathie

It helps to know were not alone. But I'm working up a protest about delays and how the medics don't acknowledge that we're more than just a bag of unrelated symptoms. I hope you don't have to wait too long

nellysgran profile image
nellysgran

OH Cathy I am also still waiting, they said 2 weeks, that was 2 weeks ago,!! I think we went at the same time for Enbrel, so lets hope it wont be long now, ( fingers crossed !) I have also been put back on Pred while I wait !

It's no fun is it. xx

cathie profile image
cathie in reply tonellysgran

Oh dear, where are you? Im in Scotland and was told 5 working days on receipt of the form. Apparently BUPA delivers here, who 'does' you?

nellysgran profile image
nellysgran in reply tocathie

I'm in Wales, I have been told that the prescription has gone in and am now just waiting for a phone call to say when they are going to deliver it !

cathie profile image
cathie in reply tonellysgran

Pred for me too. How much do you take? I'm on 10 a day, been told that I've got to stay on this until I start the embrel and then taper off very slowly. Its not doing much for me at the moment!

nellysgran profile image
nellysgran in reply tocathie

no I am only on 5 a day at the moment then start 4 next week then 3 the week after and so on

cathie profile image
cathie in reply tonellysgran

I think we must be at about the same stage, but getting information out of the hospital is like squeezing out of a stone. It'll be interesting to compare notes on how we get on. My family come from Wales (South Wales Valleys). we were supposed to have a little get together with family from Bridgend and Portcawl but my mobility wont allow this for the moment!

hatshepsut profile image
hatshepsut

I'm also in Scotland, and it's healthcare at home that deliver. You have to wait after it's delivered for a nurse to visit to go through the injection process! Even if you've been injecting for years!

Hope you don't have to wait much longer. M x

cathie profile image
cathie in reply tohatshepsut

Hello, I go to the western general and yesterday they told me that since I've had injectable mtx and also diabetes meds in a pen I could opt to skip the nurse. And its BUPA - I wonder how much variation there is even within NHS Scotland. I hope its doing you good.

hatshepsut profile image
hatshepsut

I'm in Scotland too, and it's health care at home who deliver. When it arrives, you will have to wait until a nurse visits to take you through the injection process....even if you've injected other meds for years!

Hope you don't have to wait too long. M x

hatshepsut profile image
hatshepsut

I'm afraid that it looks as if it's not working. Hope you have better luck! M x

cathie profile image
cathie

can you try another? They said that there wouldn't be a gap (not sure if I believed that) if I needed to try another. I was on infliximab for ten years and it worked well, but not immediately.

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