Starting Embrel

Well the delivery man made it this morning before we'd really finished breakfast. Everything arrived as planned, we did the injection as soon as we'd read the instructions. I'm not good first thing and I found it hard to push the button on the pen, but Paddy was to hand and he took over. I've been taking it easy today, in the hope that will help the Enbrel to work. Its too early to expect any effect, but I'm wondering about a few things.

I'm still not properly supported. I can contact my gp who can contact the hospital if there's a problem, but that is quite a round about way of doing things. I was told that they were going to appoint a nurse practitioner and that the helpline would be back, but that is rather minimal!

I'd be interested to know what tapering people who have been on Pred have used when they started Enbrel. I'll contact my GP after the bank holiday but it would be useful to know your experience when I discuss with her. I dont think that is asking for medical advice is it?..

15 Replies

  • Hi Cathy, when I started on Enbrel, was told not to do anything about injecting until the nurse had called to arrange a visit, but to read and watch the dvd that was sent with my pack. I then received the phone call from my hospital telling me the name of the person who would be calling also that I would expect a delivery on ..... . Once I had the delivery, the named person who was a nurse (and she had RA!!), came and was with me for two hours before I injected. She was also with my by phone or person for the first twelve weeks, in case I needed her for anything before I was transferred back to my normal nurse and hospital. HCH still deliver my injections four weekly and I was woken this morning with a knock on the door for said delivery!

    I am hoping this will have answered your question and whether or not you have jumped the gun so to speak.

  • I'm sorry if I've mislead anyone, but the hospital arranged for me to do the injections myself as I already have quite a lot of experience with this. So I wasn't jumping the gun or going outside the rules, which I really respect!

    But I would quite like to have a contact with someone medical and I'll be trying to set this up after the bank holiday.

    The other question I'm seeking info on is other peoples experiences of being weaned off pred when starting Enbrel. I'm rather reluctant to agree to tapering off until the Enbrel starts to kick in.

    I've got a full schedule of deliveries - however one is due for 1st January 2015 and I doubt that will happen!

    Georje I hope its working well for you!

  • Apologies for the misunderstanding! I have been on Enbrel with Leflunomide for two years now. I am better in that pain has gone from 5-10 to 1-5, with the occasional 5-10 when I get really stabbing pains that come on so quickly before departing the same way, not enough time for pain killers to kick in.

    When I last saw the consultant in December he wanted to reduce the Leflunomide to every other day before coming off completely, but when I mentioned that going from the mccoy to generic form of the drug I was finding it did not last long. He instead put me up on dosage to one or two on alternate days.

    Not sure what pred is so am assuming that is another type of DMard. I hope you are as successful on this as you were on your previous drugs to get to that point where you had medical remission.

  • Sorry, I was being a bit defensive!

    Prednisolene - steroid. Rheumy has been keen for me to be on this, I'm not. I know she has written to my GP about coming off it gradually.

    On your experience with Leflunomide I was asked to reduce the methotrexate but my inflammatory markers shot up, so it was reinstated. Its quite a lottery isn't it really these meds!

    I was feelling rotten this morning. Injected the enbrel around 9 and - this is usually my best time - I'm feeling quite buoyant. But wont expect too much.

  • Hi Cathie, glad you got your delivery, I was also told to phone my rheumy nurse and had to wait till she had shown me how to do it first before I could do it myself, I am down to 1 pred a day this week and finish them next Tuesday.

    I really do feel better its amazing the difference in just 3 days, the only thing is that I get a lot of acid reflux at night but not sure weather that is due to the Enbrel or not.

    I hope you feel the difference very quickly, ;-)

    Wendy xx

  • Wendy, I'm so pleased to hear about the progress you're making. Let it continue!

    When I went to the hospital I was asked whether I wanted a nurse to help me or whether I could do it myself (given that I'd been shown how to inject mtx and I do a daily diabetes injection). So please dont worry that I'm ignoring the rules.

    At the moment I feel like my mother used to - if sitting or lying down I feel I could just run across the room. then I get up and things aren't quite the same !

    Wendy, how many pred were you on and how long have you been tapering?

    Sorry, i'm impatient for drs to open tomorrow so I can discuss this with them!

  • Hiya Cathie. I didn't get a nurse visit as I am diabetic so same as you used to injecting myself.

    Couple of ideas, my Rheumy left me on steroid to cover the three month period that the biologic should work in and he didn't taper them until my appointment after I saw him.

    I was told to ring the Rheumy nurse if I had any problems with my Enbrel.

    Glad you got started back on biologics!!

  • Yes I'm happy too. I suspect my rheumy would like me to stay on steroids, but my GP (and I ) aren't too happy as its sent my blood sugars up. What is/was your experience?

  • My gp just increase my medication when I get a glare as my bs go sky high . He just accepts it as they are obvious is in my three monthly blo

    Leeds 23 rd £71. To £134

    Birmingham 15th £72 upwards

    Glasgow 22 Nd ££71 to £134

    I can

  • Jeez sometimes I phones r so unpredictable! Above are costs of Prince tickets lol!!!

    Ye he just shrugs and I increase the meds during a flare or if I get sick x

  • Thanks r u going to prince?

  • Yeeeeeeeeeesssssssssss!

  • I'm so glad your delivery was on time and at last you've been able to start Enbrel.

    As far as some support is concerned, when the HaH nurse came to show me how to inject, she also gave me her number and said I could ring if I had any concerns about the drug (not including allergic reactions which are too urgent and need a doctor) Also, a week after her visit she rang me to see how things were going and wanted to know about any headaches, injection site reactions etc.

    You'll have a number from HaH which is for the deliveries, but they will be able to give you the nurse's number so you can get that extra bit of support. I once said I didn't need the nurse to come too, but realised that you miss out on this extra bit of help so this time I opted to have her come round.

    I hope that helps a little, and I really hope you start to see a difference in the coming weeks.

  • That helps a lot actually, that was what I was looking for. Just feeling a bit brighter tonight.

  • hope the Enbrel works for you Cathie , I am looking forward to getting off pred. don't think it will be just yet though , no useful advice , but just wanted to say good luck x

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