I've been told I can have enbril. Had all tests yeste... - NRAS
I've been told I can have enbril. Had all tests yesterday. What's people's experience of how long it's likely to take to start it?
Hello Cathie
How long did it take to work for me......a few hours!!!!!
Injected it around lunch time on a Friday, woke up early next morning and felt the difference.
Both my specialist nurse and the nurse that came out to show me how to inject it said that some people feel the difference the next day and I was one of them.
Been on it since November 2012 and it is still working well. I had to wean myself of steroids when I first started it and by my second assessment at 12 weeks I wasn't taking any steroids and my DAS score was around 2.5, I was in remission and I still am.
Apart from a little blip earlier this year when I did take a few pain killers (I missed three MTX injections in a row), I haven't really felt the need to take any pain relief. My fingers still get a little sore and stiff and occasionally my knees hurt a little but it's nothing I can't cope with. I could put that down to my age I suppose and not RA.
Had no side effects at all.
Hope you have the same results as me.
Paula x
That's very encouraging. My question wasn't very clear though, I'm wondering how long people had to wait from ordering it to actually getting it. I'm a bit impatient! Very glad there are such encouraging results
Sorry, I think it was me that made the mistake, should of read it properly. I have just booked an appointment at Specsavers:-).
I qualified at the end of September and started the drug at the end of the following November. There is no problem with the funding at my hospital if you qualify you get it.
I had to have blood test done one of which was a T spot one. They only do these tests every month, someones collects them and takes them to Oxford (I think that's where she said). My chest xray was booked to coincided with the T spot blood test. All the blood test came back alright but they wouldn't let me start until the xray report was done. It took them 5 weeks and one day for them to do the report (radiology here not RA department). While I was waiting I got really bad. Once the had the report the drugs were ordered and an appointment was made for a nurse to see me. My specialist nurse did push for this to be done quickly due to how bad I was.
Paula x
Thanks that's what I wanted to know. I hope yours keeps working so well, it'll be interesting to know a few other people starting offat the same time.
That's good news, Cathie! I've been through the process 3 times with WGH and the details differed slightly each time but it took just over 3 weeks.
The first time I saw Carol (Clinical Pharmacist) at clinic the same day, the second time she rang me a few days later and this time I haven't spoken to her. The first time I didn't speak to a specialist nurse, the second time I had to go in and see Chris, and this time Chris rang me. Once I'd spoken to either Carol or Chris the paperwork went through and then about 2 weeks later Healthcare at Home called to make arrangements.
I'm so pleased you've been given this opportunity, I hope you have a good response to the injections.
Thankyou. Though my heart sank when I saw u mention healthcare at home, how reliable have they been? I'd prefer it to go through my local pharmacy who're really wonderful. They check my meds for side effects and have even come to my house just up the road to deliver items they'd missed.
I've never had a problem with them, and have found the staff to be very friendly and helpful. I've only just started my new injections this week (the first I've had since the troubles people have reported) but so far so good. They phoned to arrange delivery and then the nurse rang to arrange to come; when the drugs arrived there was a schedule for deliveries for the rest of the year (together with the sharps bin) with it. They'll ask if it's ok for anyone in the house to sign for the delivery. The one time the delivery was going to be late I had a phone call to say and to check if we'd be in or if I wanted to reschedule.
Hi Cathei, good news indeed after all you have been through. Regarding Healthcare at home- I do not think you have a choice- this service is outsourced by the NHS to H@H. What you could do if you wished is have it delivered to your pharmacy and collect from there. However it is delivered direct to you from H@H, they phone and arrange delivery and you are given a two hour time slot. I did have issues at the very beginning with them however they do seem to have got themselves sorted out
Good luck
P
thanks. the pharmacy delivery address is an interesting option as they are only about 5 doors down from me! Thanks for your nice message
My consultant applied for funding in the September, however I had to wait until December before the first injection was delivered and injected.
That's not good, how did you cope in the meantime? Where are you georje? And does you supply come via healthcare at dome?
I meant home, curse this ipad!
I live in Greater London and yes HCH do deliver, I had no problems until the latter part of last year, it was when they were short of the 50mg which I use. Since then it has gone downhill, they called this week at 6:45 in the evening regarding next months delivery, when I asked for the letter to take on board plane, the person said I get it from the doctor and not them. My response was that I had always got it from them and he will not allow me to have it until later. I am going to mention all this to my nurse in June when I see her, unless I have further hassles in the meantime.
The delivery van is supposed to be white refrigerated with no name, last delivery it was grey with a name on it for all to see, therefore it was not company van which is what I am supposed to have in my area. Let's face it the NHS are paying for this service, not just for the injections therefore I think we should be getting better service from them. Having said that the nurse who came to help me at the beginning had RA as well and could tell me a whole lot more than I already knew, only difference being that I have PsA, it was her that strongly recommended NRAS for help and information. I could not join at the beginning as I did not own a laptop or mobile that internet connections, I was quite archaic in 2012!
From what I understand, unless Scotland is different, they only come from HCH and not your pharmacy, so we're stuck. Good luck and I hope you don't have to wait too long.
Hi Cathie, my nurse ordered Enbrel on 16th Jan and it arrived on 24th Jan, which I realise is very quick. I started on 30th Jan. It seems to vary an awful lot. Hope yours arrive soon. Fran x
Wow that's amazingly quick. I hope you're getting good results.
I'm not seeing a dramatic improvement yet, but will keep persevering. Hope it works for you.
thanks
Wishing you good luck cathie on your new medication lets know how you get on...Nicola xxx
So pleased you have finally got the go ahead. I'm in Scotland too, although the other side....just outside Glasgow.
It took about 6 weeks to get the enbrel, and yes, it comes via H a H I'm afraid. As far as I'm aware, there's no choice about it, my pharmacist says that they don't handle it at all.
I had serious problems with them before Christmas, missing one week's dose completely. Am off it at the moment due to knee replacement, worried about future supplies.
However, don't dwell on that, just be pleased that you're finally getting treatment, I'm sure all will be well!!
Best of luck, hope you don't have to wait too long. M x
Thankyou at least I'm forewarned! I hope the knee replacement goes well, when do you have that planned? I will have to have one, but am trying to work on my muscles a bit more before that!
hi Cathie, I had mine withing 2 weeks (north Scotland) after all the bad press from HAH i have to say in the 3 years I have never had any problems, the delivery men are the nicest ever 
good luck x
That'd be good! Thanks!
It took about six weeks from when I got the go ahead to the 1st injection. It is great and has transformed my life. Hope it works for you. No problems with hah either.
Hi Cathie
From consultant go ahead to actual nurse coming and starting took about 3 wks including enbrel delivery. Consultant rushed it all through. My health authority is south Essex.
Joanne x
Thankyou everyone. It helps to have such a fantastic response. And to see names I hadn't heard for a while. Hopefully it's because you've been well. If so, I hope it continues.
Not long at all usually if you've had all your bloods and tests done. 2-3 weeks I would say. My start on an anti-TNF (Enbrel) was not a good thing as it was delayed five weeks due to hospital staff hols, breakdown in communication, lost test results, more tests needed as they weren't taken and two disputes between hospital pharmacy and HaH. HaH got it moving for me and were very helpful. In those five weeks I went so downhill I was bedbound and practically immobile and actually been that way for the past two weeks since my Humira wash out and awaiting Rituximab on Tuesday. As Paula told me before it worked very fast for her and Scouser has just started with great promise!! .. and it did for me .. that same evening. Then each day big improvements. However a site reaction stopped me using it but many of these are manageable. It wasn't working for me after five weeks but this is unusual after working so well to start with. I hope Enbrel works fast for you too.
Cathie, for me on the day of the first injection it was a feeling of 'you know I think it's easier getting up the stairs'. Then over the weeks it kicked in until the realization came that this drug was really doing it's stuff. I've been on it for about 6 years. Fingers crossed for you. Jude
Sorry Cathie just got up - between 6 and 8 weeks from decision to start of medication..
Over 8 weeks for me and still waiting - based in Scotland and Healthcare at Home are being utterly hopeless - huge queues on phone lines, not answering emails. Hope you have a much better experience.
Oh dear, that's not good. Where are you? I'm Edinburgh.
Hi Cathie
Had my knee replacement 18th March. All going well so far, touch wood!!! Don't think enbrel is working for me, seeing consultant on Tues.
Do try not to worry about HaH, you will get your enbrel soon, no point in crossing bridges til you need to. Stress just makes RA worse. Your rheum nurse should be able to let you know how things are progressing.
Good luck! M x
It took me only a matter of weeks (3-4 at the most) to get started on Enbrel, much less than I expected. It took effect within 36 hours, like magic! Healthcare at Home have atrocious levels of 'service', quite unbelievable. I don't think they could be much worse if they tried. However yesterday, for the first time in 6 months, I actually got a delivery on the day they said it would come AND to the right address! Miracles do happen. It took a lot of fighting and formal complaints though. The delivery guys are great, it's not their fault the company are hopeless at organising and communicating. Good luck! I hope you get yours soon anyhow and that it works for you like a dream.
Hi Cathie, I would get a 3 month supply of Enbrel delivered at the one time and they would call weeks before it ran out to arrange next home delivery. It is expensive stuff so chemist wouldn't be allowed to stock it.
like some others on here, Enbrel worked for me almost right away. i did however develop a body rash and had to come off it and go on another. i'm on Abatacept now and it has given me back my life. i'm still on a lot of pain relief but was able to come off a load of other meds i was on. my consultant told me that he though it was the preservative in the injection that i am allergic to and not the actual drug itself, which is really unfortunate. but i'm have found my wonder drug and i have been on it since july last year and still going really well. hope you are as successful as i have been. i know it can take some time before you find the right one but these drugs are just the best thing to happen to Rheumatiod sufferers in a very long time. all the best. XX
How long between having to come off enbrel and going on abatacept? Did you have a long gap? I was on infliximab for about ten years so these two years of dispute with the rheumatologist about me being in remission have been very painful in more ways than one! I'm glad to hear that you're doing well.
