Date: 14.12.2011
From: lynnr
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Subject: approved for enbrel
I've just came back from hospital and been approved for enbrel I'm excited but down at the same time I worry about the side effects these drug will have after 5 dmards and loads of side effects I just worry what this will bring. Anyone have any advice or any info on embel would be appreciated.
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Date: 14.12.2011
From: bsk
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Subject: Re: approved for enbrel
hi Lynn, I'm just about to start on it too but am going on a half dose as I got lots of infections on the last one. Let me know how you get on.
xx
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Date: 14.12.2011
From: lynnr
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Subject: Re: approved for enbrel
Hi bsk yeah I will u can let me know how u get on too xx
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Date: 17.12.2011
From: davina
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Subject: Re: approved for enbrel
hi lynn so happy that you get to start something that should help. for me no side effects accept the site, a little sore fore a few days and browses stright way/
it didn't work well for me and got a few invections due to reducing your immune system but hopefully it will work well for you, as it has for others t/c
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Date: 19.12.2011
From: lynnr
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Subject: Re: approved for enbrel
Thanks davina ive been told to wait on a call as to when they will deliver it then to go to hospital and my rhuemy nurse will do 1st one x I'll keep everyone posted
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Date: 25.12.2011
From: rhona
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Subject: Re: approved for enbrel
hi lynn, l am also waiting on a call for the delivery of enbrel any day now and like yourself happy to be getting something that hopefully will help but worried about side effects. let me know how you get on, good luck x
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Date: 30.12.2011
From: lynnr
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Subject: Re: approved for enbrel
Hi rhona I had a call tonight saying mine are getting delivered nxt wed so I will call my rhumy nurse tomorrow and hopefully get down to have my 1st jag on Thurs or frid I will let u know how I get on and u too please let me know how urs go. I hope u don't have too long to wait.
Tc
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Date: 30.12.2011
From: lynnr
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Subject: Re: approved for enbrel
I am having my 1st injection a week today I am so excited but nervous at same time I will post up after I've had it
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Date: 30.12.2011
From: rhona
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Subject: Re: approved for enbrel
Hi Lynn, i got a call the other day, mine is being delivered on Tues. and a nurse is calling to my house the following Tues (10th) to show me how to do it, good luck and let me know how it goes. x
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Date: 30.12.2011
From: bsk
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Subject: Re: approved for enbrel
What's happened to mine? :( Still waiting for the call.
Good luck Rhona and Lynn, be interested to see how you get on.
xx
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Date: 30.12.2011
From: rhona
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Subject: Re: approved for enbrel
Thanks bks, i'm sure it won't be too long now. x
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Date: 05.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Aw my 1st jag is tomorrow morning I'm a bag of nerves doesn't help that I took severe allergy 5mins after my 1st gold injections where my tongue and lips were swollen. Hoping I have no problems but I will write back when I get home x
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Date: 05.01.2012
From: rhona
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Subject: Re: approved for enbrel
hi lynnr, good luck tomorrow, hope it all goes well, are you getting it done at hosptal? they are sending a nurse to my house to do mine on Tuesday and i feel nervous about it but still want to get it done, i will be so disappointed if it doesn't help. take care and will be thinking of you. xx
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Date: 06.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi rhona yes I had to go down to hospital and my rheumy nurse talked me through it. I had to inject myself which I was nervous about but I'm pleased to say it was fine a little nippy but Defo not as bad as I had thought, I'm sure you will b fine to my injection site looks fine at the moment aswell there was not even a tiny drop of blood. I had it a few hours ago so I am feeling quite tired now if I get any problems with it I will let u know. Good luck for Tues let me know how things go Tc x
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Date: 06.01.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Lynnr, i am pleased to hear that it went well today you were brave doing the first one yourself, i really hope it helps you and all goes well, i will let you know on tues how it goes with me, thanks for letting me know. xx
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Date: 06.01.2012
From: bsk
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Subject: Re: approved for enbrel
Glad it went well Lynn. I'm still waiting for mine, don't know what the delay is but am getting tired of it. Seeing my consultant on Wed so perhaps he can hurry things along.
xx
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Date: 06.01.2012
From: lynnr
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Subject: Re: approved for enbrel
I'm sure u will b fine rhona x and bsk I hope u get word soon x
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Date: 06.01.2012
From: bsk
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Subject: Re: approved for enbrel
Thanks lynn, will be very interested to see how you get on. Glad Day 1 was fine :)
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Date: 07.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi guys well I have woke up today with a bad cold not sure if this is a side effect or wether I was going to get it anyway I will wait a few days and if no improvement I will phone dr x oh the joys
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Date: 07.01.2012
From: bsk
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Subject: Re: approved for enbrel
Would it have got into your system so quickly Lynn?
If you get a chesty cough, don't wait, go to get antibiotics.
Hope you feel better soon.
xx
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Date: 07.01.2012
From: rhona
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Subject: Re: approved for enbrel
hi lynnr, that's not so good, hope it doesn't develop into your chest, you take care. x
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Date: 08.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi bsk and rhona yeah my rhumy nurse was saying because it's a injection it will go straight into ur system I have woke up today and my running nose and feeling of the cold are gone thankfully and I'm not sure if it's just coincidence but my fingers were not as sore or swollen fingers crossed each day it will get better:) I'll keep u posted.
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Date: 08.01.2012
From: rhona
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Subject: Re: approved for enbrel
Glad to hear that Lynnr, hope it gets better each day, not long now til tues. and i will let you know how i get on. x
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Date: 09.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Aw rhona I bet ur as nervous as I was and excited too I just hope it all goes as smooth for u as me I'm desperate for Friday so I can take my 2nd and hopefully start feeling the benefits take care and all the best for tomorrow I will b thinking of u x
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Date: 09.01.2012
From: bsk
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Subject: Re: approved for enbrel
I found Cimzia worked really quickly - within days too.Glad you are feeling the benefit already. Want mine! :)
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Date: 09.01.2012
From: rhona
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Subject: Re: approved for enbrel
Thanks Lynnr, yes i am nervous, i will let you know tomorrow how it went x
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Date: 10.01.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Lynnr, well that's me had my first jag and i was surprised at how easy and painless it was and i managed to do it myself. I will let you know over the next few days if i have any side effects. x
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Date: 10.01.2012
From: lynnr
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Subject: Re: approved for enbrel
That's great rhona I'm so pleased for you keep me updated tc x
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Date: 13.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Can't believe this is my jag day again and I've to do it myself oh I'm not looking forward to it..... Lol
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Date: 13.01.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Lynnr, hope you start to feel the benefit soon, i think i feel a little better since getting mine on tues. and so far no side affects. I did mine on my thigh and it was really quite painless, hope the next one will be lol. take care x
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Date: 13.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi rhona well today was much more painful not sure why but it stung pretty bad even a little blood and a small bruise?? Strange lol I think I felt a little better last week too but felt really sore today when I woke not sure if the effects of it were wearing off and just needed topped up it is all a mystery isn't it lol are u feeling more tired I have been having longer naps during the day and more headaches than before. Glad ur feeling a little better too. Tc x
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Date: 13.01.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Lynnr, I will probably be the same when i do the next one on tues. I don't think i have felt any more tired than usual, although for the last few weeks i have had problems getting to sleep at night then come morning i am tired and want to stay in bed lol. I suppose it takes time for your body to get used to it then hopefully your headaches will ease off. Take care and hope you feel better soon. x
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Date: 16.01.2012
From: lynnr
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Subject: Re: approved for enbrel
How are you feeling I feel awful this week git massive flare in my wrists they are agony I guess it's going to take alot longer to sort me out lol I hope you are having some improvement, although you will not be due to take ur 2nd injection till tomorrow let me know how you get on.
Tc
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Date: 16.01.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Lynnr, i don't feel good at all today, my hand is really sore and my legs are very sore. in fact i am just sitting in my housecoat today. I am sorry to hear that you are not so good either, perhaps it will take a few more injections before we feel a difference. Take care and keep in touch. x
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Date: 17.01.2012
From: rhona
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Subject: Re: approved for enbrel
Just had my 2nd enbrel injection and can't believe how sore it was compared to last week, i felt like pulling it back out again but it will be worth it if it helps, hope you are feeling better today. x
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Date: 17.01.2012
From: lynnr
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Subject: Re: approved for enbrel
I know my 2nd was agony I'm kind of dreading taking it on Friday:(
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Date: 18.01.2012
From: rhona
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Subject: Re: approved for enbrel
Just remember and take it out the fridge about half an hour before use, perhaps mine hadn't been out long enough. I hardly felt it last week so i don't understand why it was so sore this time.
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Date: 18.01.2012
From: bsk
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Subject: Re: approved for enbrel
Interested to hear how you two are getting on! Hope the injections get easier with time.
Will be getting mine next couple of weeks. Had to see a chest consultant today due to asthma etc. He's agreed I can start Enbrel but I must have antibiotics at home in case of getting an infection. Interesting consultation which answered quite a lot of my questions. I will be glad to get off the steroids, hopefully.
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Date: 18.01.2012
From: rhona
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Subject: Re: approved for enbrel
Hi bsk, I have been thinking of you and wondering if you had heard yet. That's good that the consultant ha agreed for you to start enbrel and it's good to have the antibiotics on hand in case you do need them but hopefully you won't. I think i am starting to feel a bit better but it is early days yet and my walking still isn't too good but i am hoping it soon will be. Let us know how you get on with it, take care. x
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Date: 19.01.2012
From: Creswick
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Subject: Re: approved for enbrel
Hi Enbrel users! When I was injecting with Enbrel it was always very painful - a kind of very painful extreme stinging. When I moved on to Humira I was told that the surgical wipes often react with the injection fluid and this is often the cause. Wish someone had told me when I was injecting with Enbrel!! I now thoroughly wash the sight and just use a sterile (or as sterile as I can get it)wet cotton wool pad and have had absolutely no problem. Hope this helps
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Date: 19.01.2012
From: bsk
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Subject: Re: approved for enbrel
Useful tip, thanks! Perhaps if you let the area where you wiped dry off it might not sting so much. Thanks too Rhona. Glad to hear it is starting to work. I've heard it works quite quickly. I'm so fatigued at the moment so will be glad to get on with it and my life!
xx
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Date: 19.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Thanks for the tip I will try that for tomorrow and I will be leaving it out fridge so it's a little warmer hopefully that will help the stinging. Bsk I'm glad your getting enbrel soon like rhona I think I'm feeling slightly better but not great. Take care
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Date: 20.01.2012
From: rhona
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Subject: Re: approved for enbrel
hope it was a bit easier today Lynnr, i am not feeling too great today, hoping after next jag there will be an improvement. x
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Date: 21.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi rhona I am actually just getting ready to go hospital out of hours I woke up with swollen neck tender lymph nodes and now I have fever so I've to go and get checked out fingers crossed it's nothing x
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Date: 21.01.2012
From: RHONA ROBERTSON
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Subject: Re: approved for enbrel
That's not so good Lynnr, I hope you are alright, i will be thinking of you, take care and let me know how you get on. xx
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Date: 21.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Well I'm home and not really further forward and just feel as bad as I did yesterday they said it probably was side effect but as I really need to get this arthritis under control I should continue although they recommended I talk with my rheumy nurse on mon it's all just getting on top of me now:( I hope all is well with u x
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Date: 21.01.2012
From: rhona
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Subject: Re: approved for enbrel
It may take a little while for your body to get used to the medication, i have been very sore and tired so haven't been able to do anything but sleep and rest, try and get plenty rest and if you don't feel any better before Monday then call the NHS 24 for advice or call you doctor out. I hope you feel better soon. Are you still taking all your other medications, i have been told to continue with MTX, sulphasalazine and plaquenil until i am sure the enbrel works. take care. x
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Date: 21.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Yeah the dr sed it might just take time I can't take any dmards Im allergic to them all I still take my tramadol and paracetomol and anti inflammatory x I'll keep u updated x
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Date: 24.01.2012
From: charlotte
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Subject: Re: approved for enbrel
Hi Ladies Was interested in your posts and thought i had to write to tell you my experience as its seems similar to yours. I started the enbrel injection in Novemeber. I had six weeks worth and i was feeling on top of the world. I even managed a jog! Then week or so before christmas i took injection on the friday as usual and Monday morning I woke with swollen face, throat and hands. Rang the Rhumy nurse - said was a reaction to stop over the break and start on 3 jan when help is around. But then two days later i had all the ususal symptoms of a flare up. So i called back and said its ok its a flare up. this time it was my nurse who answered the phone and she said no way. mustn't take it until I have seen them. Well thats not until 7th Feb. So here I am at my wits end. Everything hurts, swollen face etc still, heart racing, chest pains, hardly walk, not sleeping etc I feel like poo. I thinks its harder cos I had a taste of feeling really good for a while and thought this is it i can go back to being a 31 year old... oh well I can't understand why they say its a reaction as had been taking for 6 weeks, you would have thought it would have happened sooner and on the day of the injection too... The other thing that i noticed is that after taking it i would have a few hours of very strange 'mental episodes' imagining things moving and all sorts then would stop. So started to take it later in eve then go to bed.
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Date: 24.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Aw Charlotte I feel for you most of my reaction that I had with previous dmards happened 3-5 weeks in think it just takes time to build up in your system it's terrible you have time wait until Feb x take care and let me know how you are getting on x
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Date: 24.01.2012
From: bsk
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Subject: Re: approved for enbrel
Hi Lynn, sorry to hear you are feeling so rough. Sounds quite frightening. What did the rheumy nurse say today?
xx
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Date: 24.01.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Girls, That is not good Charlotte, it can be scary taking new drugs. I had my 3rd enbrel injection today and i still don't feel good, i was hoping my feet and legs would be starting to feel better, now there is all the other worries with side effects, so far i haven't had any. I hope you are starting to feel better Lynn and have you had any word yet bsk about starting enbrel? take care xx
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Date: 24.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi bsk the rhumy nurse said as long as I've no infection on Friday then I've to take the enbrel they r hoping it was just a viral thing and so am I because I think I'm starting to feel slightly better so fingers crossed thanks for asking rhona I'm sorry you are not feeling better but maybe next week you will get there x take care and keep me updated thanks x
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Date: 24.01.2012
From: bsk
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Subject: Re: approved for enbrel
Hi Rhona, it is early days, I think it can take up to 12 weeks to kick in. Hang in there! Still waiting for mine to arrive, doing ok on steroids but keen to get them down. I've had a few weeks of feeling better on them and it is nice to do stuff again, just hoping that isn't going to end anytime soon :) Hi Lynn, glad to hear you are improving. Might just be coincidence..... xx
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Date: 24.01.2012
From: rhona
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Subject: Re: approved for enbrel
Thanks bsk, i suppose it is early days, it just feels so long since i have been able to do things and i suppose it is getting me down. I am pleased to hear that you are feeling a bit better and hopefully it will be very soon that you start the enbrel and it may kick it quickly for you. take care. xx
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Date: 29.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi guys just thought I would write and say I am feeling so much less pain still stiff but the pain has improved so much that was my 4th injection on Friday past I still think it wears off by the wed night and I'm much worse on the Thur but think it is definitely improving my mobility for now. Hope you are all getting on well bsk I hope you have started your injection and rhona I hope you improving as well.
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Date: 29.01.2012
From: bsk
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Subject: Re: approved for enbrel
Hi Lynn, So glad to hear that, at last! long may you improve. I haven't got my drugs yet. Coming down with a cold so just as well really, will get that out of the way before I start. Desperate to get off the steroids really though slightly dreading enbrel won't work so pleased to hear your results.
Take care.
xx
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Date: 29.01.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Lynn, That is good news, i hope it gets even better as time goes on. I had my 3rd injection last tues and i'm still not feeling too good. I actually thought i was doing better the first 2 weeks but after my 3rd one i felt worse, i also had a bit redness at the site of injection last week, i didn't have any reaction for the first 2, although it is fading now and it wasn't sore or itchy. I felt really bad before i started the injections so it may take a bit longer to work for me, i just hope they do. I'm sorry to hear that you have a cold bsk, it is so frustrating when you have to wait for new drugs then come down with a cold but it's better to have it before you start the injections and hopefully they will be a great benefit to you. take care and speak soon. xx
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Date: 29.01.2012
From: lynnr
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Subject: Re: approved for enbrel
It's funny you should say that about the redness I had nothing with my 1st jag and each one since I get a big bruise and a few days later I a big patch of redness around the injection site and bruise it isn't sore or itchy I've even got the bruise on my other leg from last weeks jag it takes ages to go away weird....
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Date: 29.01.2012
From: rhona
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Subject: Re: approved for enbrel
I read somewhere that it stops happening after a while, one article said after 1 month and another said after 3 months it usually stops, so here's hoping. x
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Date: 29.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Yip hope so do you have bruises? My legs r in some mess lol
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Date: 29.01.2012
From: Colin
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Subject: Re: approved for enbrel
when I was on Enbrel was told to take PIRITON 4 hours before the injection , does help a bit & took it for several days after the injection but still had big rash every time around site
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Date: 29.01.2012
From: rhona
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Subject: Re: approved for enbrel
i have a small bruise on one leg and the redness on the other leg looks like a burn, i thought it was going to turn into a bruise but it is fading now. What is PIRITON Colin?
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Date: 29.01.2012
From: Colin
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Subject: Re: approved for enbrel
http://www.allcures.com/Medicines/Allergy-Relief-13000/PIRITON-30-2132074-Leaflet.htm it a antihistamine tablet that you can buy over the counter , a steriod cream can help with any itching
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Date: 29.01.2012
From: rhona
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Subject: Re: approved for enbrel
Thanks Colin, I might try it if i get any more.x
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Date: 29.01.2012
From: lynnr
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Subject: Re: approved for enbrel
Thanks Colin I'll keep that in mind although I don't get itching well yet anyway
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Date: 02.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Well it's my 5th injection tomorrow and I still have a bruise on my leg from 2 weeks ago and a bigger bruise with a red mark around it from last weeks does anyone else seem to bruise with the injection also I get a fee bruises on my lower legs on the leg I injected?? Weird
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Date: 03.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Lynn, I did my 4th injection on tues. and the red mark on my leg is as big as a saucer, it's like a big red circle with a bruise in the middle of it, i still have mark from last week on other leg, i wouldn't mind so much if i could move around but my knee is agony, i get so fed up with it, hope you are better this week. x
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Date: 03.02.2012
From: kelly u
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Subject: Re: approved for enbrel
hi all i was on enbrel and didnt work for me ......i remember the pain of those injections very well i bruised really easy with those its very common although you should contact the nurse if you are worried ....make sure you take the injection outt the fridge 30 mins before injecting if its really cold it hurts more :0)
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Date: 03.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Aw rhona mine is not as big as that but this week the jag was agony and I had a huge lump at injection site@ Kelly u I take mine out fridge for at least 45 mins and it's still agony if u dnt mind me asking what are you taking now?
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Date: 03.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Kelly, How long did they keep you on enbrel before they decided it wasn't working? i've been on it 4 weeks and still waiting on it to kick in, my jag wasn't too sore this week Lynn but it left the biggest mark yet. x
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Date: 03.02.2012
From: bsk
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Subject: Re: approved for enbrel
hi everyone! Not looking forward to the bruises and swellings lol! Mind you, no sign of my Enbrel yet and now I'm on antibiotics so won't be able to take it if it turns up. Don't know what is taking so bloomin' long. Got a vile cold which turned into an infection and have been stuck at home all week apart from two trips to hospital for scans. All very dull but amazing how much better my joints are from doing nothing! xx
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Date: 03.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Poor u bsk thinking of u hopefully u will b on it soon enough and it will work. Xx
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Date: 03.02.2012
From: rhona
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Subject: Re: approved for enbrel
Keep you chin up bsk and wishing you a speedy recovery. xx
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Date: 04.02.2012
From: bsk
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Subject: Re: approved for enbrel
Thanks very much. It's all very boring and familiar but just have to keep going.
xx
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Date: 04.02.2012
From: marene
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Subject: Re: approved for enbrel
hi bsk, in this weather you are beter off indoors, although without the infection. Hope you feel better soon. Hope your enbrel turns up soon. Take Care X
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Date: 04.02.2012
From: bsk
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Subject: Re: approved for enbrel
Thanks very much, Yes, you are right it is better to stay home. Been watching the snow pile up all evening, looks beautiful! You take care too in this weather! xx
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Date: 05.02.2012
From: marlene
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Subject: Re: approved for enbrel
Hi Bsk, I watched the snow pile up also very pretty. My dog was delighted!!! My two sons went off to Austria to ski, they could of stayed home.
Keep warm and safe take care. X
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Date: 05.02.2012
From: bsk
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Subject: Re: approved for enbrel
Thanks, will do and you too.Yeah, would have been cheaper for them to stay home lol!
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Date: 06.02.2012
From: lynnr
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Subject: Re: approved for enbrel
I'm still having flares and been on enbrel for 5 weeks does anyone know when it will kick in? I do feel a little better but still the flares. My wrists have been agony and my jaw: -(
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Date: 06.02.2012
From: bsk
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Subject: Re: approved for enbrel
oh gawd Lynn! I'm sorry to hear that. I have a vague memory of nurse saying up to 12 weeks. Hang in there but why don't you ring your nurse and check? Cold weather prob doesn't help.
xx
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Date: 06.02.2012
From: kellyu
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Subject: Re: approved for enbrel
@lynn hiya i was on enbrel 4 months and i have more frequent flare ups and alot more painful so i moved to Rituximab infusions...my first one was dec and it takes up to three months i feel slightly better im not having as many major flare ups which is good ......enbrel can take up to three months to work too so may be early days xx
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Date: 06.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Lynn, it's strange you are saying your jaw is agony, mine is really sore as well, even when i speak it is sore and my neck hurts and i actually feel worse since starting it. I called the hospital today but they haven't called back yet, i wanted to ask if this is normal and how long i should give it, i will let you know what they say if she calls back. xx
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Date: 06.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi rhona I like u have been having terrible pains in my neck it's getting worse instead of better I didn't want to bother my rhumy nurse as she will probably say it needs to have had at least 3 months but my wrist is agony along with my jaw and neck sorry for the rant think because of the way everyone talks about these miracle drugs I think I thought I would b my old self again seems not x let me know what they say rhona x
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Date: 06.02.2012
From: rhona
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Subject: Re: approved for enbrel
hi lynn, I don't think you could rant any more than I do, i think with what we go through we are entitled to lol, I was really hoping that this drug would be like a miracle and maybe it still is early days but i really think i'm worse now. The hospital hasn't called me back yet and i know they are busy, i have an appointment at the ward next tues so i guess i can ask the questions then if they don't get back to me. take care and speak soon x
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Date: 06.02.2012
From: lynnr
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Subject: Re: approved for enbrel
I think it's terrible that they haven't called you back as you say they are busy but you need them too I got my rhumy app in today because she has went on maternity leave they have re done all the apps and mine is not until June and my 10th wedding anniversary that just seems too long to wait I will see my rhumy nurse end of March so I will see what she says. Keep me posted hope things get better for u x
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Date: 06.02.2012
From: bsk
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Subject: Re: approved for enbrel
Rhona, why don't you call the on-call rheumatologist at your hospital? Or your consultant's secretary? That's what I do if my rheumy nurse is otherwise engaged (though she is very, very good, she is unbelievably busy and sometimes even has days off!!) Or have I already said all this somewhere else? Apologies if that is the case. Hope you get hold of someone soon. Sorry to hear you are suffering too Lynn. Still haven't heard about my drug and will call the hospital tomorrow, though reading your posts,I'm not entirely sure I want it lol!
xx
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Date: 06.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi girls, i must admit i was disappointed that she didn't call back and i don't like to make a nuisance of myself, if i feel as bad tomorrow i will call and see if there is anyone else there, i have an appoint. for next tues. but when i called today i was told that appoint is for physio and a jag if needed although there should be someone there as it is at the rheumy ward, nothing it ever simple is it! both of you take care and it might work miracles for you bsk, some of the reviews on the internet are really good about it. xx
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Date: 07.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Aw bsk dont let us out u off it might just be the right thing for u I'm getting worse by the day seemed so much better early on so not sure what's going to happen I suppose if this doesn't work it will b humira for me next too b honest I don't really care I just want something that works lol keep us posted hopefully u will get it soon x rhona I hope u have Bern bit better today or at least got some where with rhumy nurse it's never ending take care xx
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Date: 07.02.2012
From: bsk
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Subject: Re: approved for enbrel
Any news Rhona?
Hi Lynn, can't believe you are getting worse. Perhaps it needs more time? What did they tell you to expect?
xx
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Date: 07.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi lynn & bsk, I thought last night i felt a little better and i got up this morning and did my 5th jag which was actually quite painless then this afternoon i started feeling quite bad again, i am beginning to wonder if this drug makes me worse although i still keep hoping. I called my doc. surgery today as i am due to get my blood tested and i asked if they could arrange a nurse to come to my house this week to take it as i can hardly walk and even getting in and out the car is a struggle and they said No i would have to go there, i was so angry i told them i am going to change doctors and the hospotal hasn't called back, i will probably just wait until next week when i am due in and ask if they will take my blood there and ask about the enbrel. It makes me mad that people behave like that, anyway lots of people do benefit from enbrel bsk and hopefully you will be one of them and who knows Lynn perhaps we will waken up one of these mornings and feel great. take care. xx
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Date: 08.02.2012
From: bsk
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Subject: Re: approved for enbrel
Have you tried paging the on-call rheumatologist? Just ring the hospital switchboard and ask them to do that. They will take your phone number and they will phone you at home. That is what my nurse has told me to do when I have had problems and they have always responded.One time the rheumatologist arranged to meet me in Casualty at an appointed time.Another, they advised me on drug dosages over the phone and offered to see me the next day in the clinic. Have a go!
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Date: 08.02.2012
From: rhona
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Subject: Re: approved for enbrel
I am so tired of it all bsk, my husband said the same as you but i really feel i don't have the energy to try and get them again. I have an appoint. for Tues. so hopefully there will be someone there to speak to, i have already made 2 calls to hospital and left number and GP wasn't helpful either. x
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Date: 08.02.2012
From: bsk
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Subject: Re: approved for enbrel
I understand that feeling only too well Rhona but it is almost a week to wait. The other option is to present yourself at A&E. I'm concerned that you are in so much pain and you don't want to find yourself stuck over the weekend with only a skeleton staff on at the hospital. Can you let your husband do the phoning on your behalf? My last word on the subject! xxx
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Date: 08.02.2012
From: rhona
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Subject: Re: approved for enbrel
He did offer to phone bsk and that's exactly what he said about it being almost a week but i really don't even feel up to going in now, i am doping myself with co-codamol and was in bed most of the day.if i feel a bit stronger tomorrow and the anger takes over i might call again but i still can't believe that they didn't have the decency to call back, i hope you are feeling alright just now and it may be that this drug just isn't for me but it might be great for you. Thanks for caring bsk i do appreciate it especially when the professionals don't seem to care. xx
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Date: 09.02.2012
From: bsk
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Subject: Re: approved for enbrel
Hi Rhona, I completely understand where you are coming from. I hope you get the energy to make that call but, in the meantime, rest as much as you can.
I wish I could do more :)
xxx
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Date: 09.02.2012
From: lynnr
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Subject: Re: approved for enbrel
I hope you are feeling better rhona I've had a terrible few says my wrist is flareing and is utter agony I phoned my rhumy nurse twice today and asked her to call me back but she never I take my 6th enbrel injection tomorrow and yes I will take it but it is just not helping me in fact I am definitely getting worse it will be 2 years in June since I have been diagnosed and I have not found anything that's suitable or I'm not allergic and I've tried over 6 meds now I wonder what actual damage has occurred in this time sorry to rant but I am so p****d off 34 years of age and in this state just want my old self back and so do my 3 kids :-(
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Date: 09.02.2012
From: rhona
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Subject: Re: approved for enbrel
Poor you Lynn, I still feel bad, my shoulder and legs are agony, you are young and at 34 it doesn't seem fair. I was diagnosed about 11 years ago when i was 46 although i think i probably had it long before that as i remember getting terrible pain in my shoulder when my 3 girls were young, i found some of the drugs hard to get used to at first but even although i am still taking them i think they have stopped working and i think i am worse since starting the enbrel unless it takes a long time to be effective. I worry too about the damage in my knees and i am frightened they have left it so long that i won't be able to walk at all. There must be drugs out there Lynn that will help you it's just getting the right one's and it is so frustrating waiting when you are in pain. someone even suggested hash lol but i dont think that's the answer. hope you feel better soon and hopefully after tomorrow's jag it might kick in, look after yourself and i am thinking of you. xx
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Date: 10.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Thanks for the kind thoughts rhona I got hold of my rhumy nurse today she said give it the full 3 months to get into system and I'm not allowed any more steroids it's a bloody carry on hate the thought of wasting 3 months and nothing improves then it's start again I'm really sick fed up of the whole process now x I hope u are keeping well x
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Date: 10.02.2012
From: rhona
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Subject: Re: approved for enbrel
well i suppose if there is a chance it will work we are as well waiting the three months and i know what you mean about wasting time, i am hoping to get a steroid on tues. but perhaps they won't give me it either as i've had loads. i'm not surprised you are sick of it Lynn it's not nice going through this and for you to be so young, but try and stay positive, if the enbrel doesn't work then surely the next thing will, take care. xx
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Date: 10.02.2012
From: chrissy
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Subject: Re: approved for enbrel
Hi all, just read all your posts about enbrel if its any help, i was on it for 18mth, and was doing well but it stopped working,and yes it use to sting and swell at the injection site, no matter what i did, took it out of the fridge 30mins before injecting etc, im now on toxicilamab ive had 7 infusions and doing ok,but keep comeing out in cold sores, but i can cope with cold sores better than all my joints inflamed,anyway let me tell you my history of drugs ive had for this wicked disease, mext, sulf, humeria, retuximab,enbrel, and loads of kenalog injections, in my joints aswell,which is a steroid, so hope this helps because i know the pain you are all in,but its hit and miss,takecare chrissy.x
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Date: 10.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Chrissy, Thanks for your reply, can i ask you how long it took before you noticed a difference with enbrel? hope you do well on your latest treatment take care. x
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Date: 11.02.2012
From: charlotte
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Subject: Re: approved for enbrel
I went back to the rhumy Tuesday and he confirmed that I did have an allergic reaction to the Enbrel before xmas. It was six weeks before it made itself known to me in so much as the swollen face etc. But it turns out the 'hullcenating episodes' were an early warning of allergy but the home nurse said hadn't heard of it before and didn't tell anyone. So I have been without anything since mid Dec and still have to wait another month to try Humira. Apparantly the gov states thnat need to be off previous drug for three months to have the next one which is just s@@**! One of the major problem for me is that my heart swells and causes it to race. (have had a history of heart probs) and so yesterday I think i had yet another TIA but didn't go to hosp as they never do much anyway. Today I feel like i ran a marathon. I was so upset this week to hear my hubby say 'it was wonderful for a month i finally had my wife back - she was bubbly and fun like she used to be, even our friends said so' he meant well - the enbrel was fanatastic i even managed a run but i now think what must i be like rest of the time then? I am only 31 and seems that i am not fun anymore :( Anyway keep strong everyone, be positive and chin up xx
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Date: 11.02.2012
From: chrissy
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Subject: Re: approved for enbrel
Hi rhona enbrel more our less started to work straight away on me,i still had little flares now and again, but that was mainly me doing to much, as you know you pay the next day if you do to much,what other treatment have you had rhona.x
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Date: 11.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Charlotte, that is not so good that you had a reaction to enbrel, i guess it is a lot of trial and error, hopefully the Humira will work quickly and you will feel better soon, it does seen a while to wait between drugs but it's not too long now to wait. I think when we feel unwell we can be more sensitive to what people say and your husband was just so happy to see you better and hopefully you will be again soon, it is very difficult having to cope with it especially when you are so young but try and stay positive. take care. x
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Date: 11.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Chrissy, Thanks for your reply. I am on sulphasalazine, methetroxate and plaquenil and started enbrel 5 weeks ago but i am still waiting on it working, perhaps it's not going to and i may need to think of something else. It's very frustrating as i thought i would feel better by now but i'm still more or less housebound at the moment, take care. x
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Date: 11.02.2012
From: chrissy
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Subject: Re: approved for enbrel
Hi rhona thanks for your reply,thats not good, im no doc but after 5wk, you should be feeling some benefit im sure,just get back on to rhumy and tell them its not working, theirs loads of new drugs drugs out their,do you know what your ESR is, mine was 110, and its down to 4 now,so they know if the drug isnt working by your ESR.x
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Date: 11.02.2012
From: rhona
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Subject: Re: approved for enbrel
hi chrissy, before i started enbrel it was 95 and when i got my blood checked the week after i started enbrel it had went down to 54 but to be honest i didn't feel any better, i should have had it checked again last week but couldn't make it to the nurse and they wouldn't come out to do it so i am hopng i will get it done at hospital on tues, it will be interesting to see what it is but my concern is that my knees are so bad i can hardly walk or get off a chair and i had hoped that would have improved. That is good that your is now 4, take care. xx
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Date: 13.02.2012
From: lynnr
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Subject: Re: approved for enbrel
I just thought I wud give u a quick update still flaring and not feeling great really painful wrists neck and jaw and I saw my own doctor tonight who really just spoke and seemed to pass over what I was saying she gave me meds as I have been experiencing tingling and numbing of all my fingers and she said it could be 1 if the things they take you off enbrel for but might not be she then went on about reanaurds( not sure of spelling) I am no further forward. She told me to speak with my rhumy nurse.....
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Date: 13.02.2012
From: marlene
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Subject: Re: approved for enbrel
Hi Lynnr, I don't know much about your meds as I have OA. I just wanted to say hang in there and I am sending you a big hug.
Take Care wish you well soon X
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Date: 13.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Thanks alot marlene means alot x
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Date: 13.02.2012
From: bsk
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Subject: Re: approved for enbrel
Hi Lynn, your gp doesn't seem very sympathetic! Sorry to hear too that drugs aren't kicking in yet. Hope they will soon. Got to phone my nurse tomorrow as no sign of my Enbrel (not that I am desperate lol!)
Take care both you and Rhona.
xx
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Date: 13.02.2012
From: rhona
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Subject: Re: approved for enbrel
Thanks bsk, I hope you are feeling a bit better and get the enbrel soon. I am hoping to get the fluid out my knee tomorrow and a steroid as i am having real difficulty moving. take care xx
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Date: 14.02.2012
From: bsk
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Subject: Re: approved for enbrel
Good luck today Rhona, I will be thinking of you. Let us know how you get on. don't forget to rest for two days if you have a steroid injection in your knee. Chat later I hope.
xx
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Date: 14.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Hope u feel better rhona And bsk I really hope u get ur enbrel soon I have woke up today full of flu today and both my wrists are flaring bad I know my rhumy nurse says I'm not allowed any more steroids but no one has told me anything about the damage they do if u have too many,?? Does anyone know? She did talk about oral steroids but again I don't want to get too hospital and they think enbrel is working for me when it's actually the steroids??? AW I could scream nothing is ever straight forward in my life sorry for the rant x lol
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Date: 14.02.2012
From: rhona
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Subject: Re: approved for enbrel
thanks for your kind message bsk and sorry to hear you are still not too good lynn. i went to hospital today and got jag in knee but the sister could see i'm not doing too good and wants me to go in for a few days. i have to go in on thurs morn. i have been told to continue with the enbrel for 12 weeks to see if it works. i think i will probably be given steroids but like you say
lynn i won't know if the enbrel works if i'm full of steroids but this not being able to walk is sending me mad. It's not good to get too many steroids lynn but sometimes they are necessary. xx
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Date: 14.02.2012
From: lynnr
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Subject: Re: approved for enbrel
I'm really sorry to hear you have to go into hospital that's not good but nessecery keep us posted and take care while u r there hopefully things will get better I've been told the same bout staying on enbrel for 12 weeks
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Date: 15.02.2012
From: bsk
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Subject: Re: approved for enbrel
Hi Rhona, I echo Lynn's comments and, to be honest, it will probably do you a lot of good to be looked after for a few days. Make the most of it! I had a period of 10 days in hospital when I first got ill and I really needed the pain control, rest and support and it sounds as if you do too. Sending a very big hug your way.
Neither of you should worry about taking steroids at this stage as you can wean off them when you've been on the Enbrel for long enough. You'll soon know if it isn't working. Might sound easy for me to say but I've been on the steroids for 2 1/2 years - up and down and a low dose isn't that bad apparently. Just make sure you get calcium and Vit D tablets to prevent osteoporosis. I phoned the hospital today and have to report back if I don't get a phone call from the drug company by tomorrow lunchtime! Naturally, I felt a cold coming on (or coming back, more like it) so hope I don't have to delay it further. Still, managed a very fine celebration lunch with family today and everyone said how well I looked. Well, steroids do that to you lol! take care both of you xxx
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Date: 15.02.2012
From: bsk
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Subject: Re: approved for enbrel
Yippee (I think....?) Enbrel arriving friday. There was a mix up as the hospital forgot to give them the go ahead to contact me. Just as well I rang. However, I've a nasty cold, either it's come back from 10 days ago or it never went. Needless to say, that will delay things. However, I do feel relieved to be moving forward. How are things for you today L & R? Any benefit yet from the steroid jab Rhona?
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Date: 15.02.2012
From: lynnr
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Subject: Re: approved for enbrel
I am so happy to hear that bsk just hope the cold shifts and u can get started. I'm much the same wrists are painful and I'm feeling like I have flu it's just 1thing after another. Take care and rhona good luck x
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Date: 15.02.2012
From: bsk
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Subject: Re: approved for enbrel
Thanks Lynn. I sincerely hope you haven't got flu though it has been going around, my gp thought it might be flu and I've certainly been ill for quite some time. Did you have a flu jab last year? Are you wearing wrist supports at night? I find that helps a lot.
xx
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Date: 15.02.2012
From: rhona
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Subject: Re: approved for enbrel
hi bsk, good to hear from you and thanks for your support, i am so glad that you are getting the enbrel, just step up on the vitamin c and try and get that cold shifted, i do hope it helps you. i had my 6th jag yesterday and so far it hasn't caused any infections. I don't know if the steroid has helped any yet, perhaps a little. i am a bit apprehensive at going in tomorrow but as you say hopefully the rest and support will help and probably steroids. that was lovely that you managed lunch with family and great that they said you looking well, take care and good luck with the enbrel. thanks lynn, i will get in touch as soon as i get home from hospital, hope you feel better soon. xx
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Date: 15.02.2012
From: bsk
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Subject: Re: approved for enbrel
Thanks Rhona. Make the most of your rest! Chat when you get home.
xx
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Date: 15.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Hopefully u will b feeling much better when u get home tc xxx
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Date: 20.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi just on to rant I've had to go onto antibiotic and that means stopping my enbrel, this week this is my 7th week and my 1st course of tablets I just hope this is not going to b a recurring thing and I hope that my pain doesn't get too bad. Sorry for the moan.
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Date: 20.02.2012
From: bsk
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Subject: Re: approved for enbrel
oh no! I do hope this isn't the beginning of recurring thing too. Though, hopefully, as enbrel has shorter half life, you should recover more quickly. How disappointing for you. I start mine on Thursday. xx
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Date: 20.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Good luck for Thursday let me know how u get on x
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Date: 21.02.2012
From: bsk
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Subject: Re: approved for enbrel
Thanks Lynn. How are you feeling today? Are the antibiotics kicking in yet? Have you had any word from Rhona? She's been away for a quite a few days now. I hope she is ok. Apologies for the all the questions!
take care. Will let you know how Thursday goes!
xx
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Date: 22.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Hi bsk I'm feeling a little better just not looking forward to not taking my enbrel this week but needs must. Good luck for tomorrow x Yeah I was thinking the same about rhona I hope she is ok too x
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Date: 22.02.2012
From: bsk
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Subject: Re: approved for enbrel
Glad you are a little better. I've had terrible fatigue lately and hope the enbrel will help with that. I want to go back to bed 2 hours after getting up! It's pretty limiting.
x
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Date: 23.02.2012
From: lynnr
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Subject: Re: approved for enbrel
Poor u bsk I know how u feel I'm definitely not as tired since being on enbrel so that's always a good thing, I'm waiting on my 3rd delivery of enbrel today and I'm starting to feel really sore already really dreading next week having not taken it this week and I will need time get onto dr my jaw is excruciating and eating is troublesome. Let me know how u get on with the enbrel and good luck
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Date: 23.02.2012
From: bsk
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Subject: Re: approved for enbrel
Hi Lynn, Well, went ahead with the injection today.Wasn't going to do it but my niece was here and I felt I couldn't chicken out in front of her!
Nurse did say I should get less infections, so let's see. It was painful though! How often do you get yours delvered, mine is every two months. Have you really been on it for four months alread? Sorry to hear about your jaw. Hopefully, that should settle down soon.
xx
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Date: 23.02.2012
From: lynnr
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Subject: Re: approved for enbrel
I'm really glad you started hope it works fingers crossed I get mine delivered every 4 weeks this would have been my 8th week on it tomorrow, tonight I have noticed a large dent on my right buttock and from Google it looks like this can be a side effect of the steroids I wasn't told this can happen have you heard of it?
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Date: 24.02.2012
From: bsk
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Subject: Re: approved for enbrel
Hi Lynn, no I haven't heard of that. I've had a few injections but nothing like that. Will it go away with time does it say? Perhaps you could ask your rheummy nurse about it?
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Date: 24.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi bsk & lynn, i just got home from hospital tonight and i pleased to say that i am feeling a good bit better, i thought i would only be in for a few days but it ended up being 8 days, they spent the first few days taking loads of blood tests before i was finally prescribed oral steroids, they thought i had an infection because the ESR was so high but when the blood tests were ok they then said it was the arthritis being so active that caused it to be so high and they were then able to prescribe the steroids. i am still taking the enbrel injections and they hope to reduce the steroids over the next few weeks until i go back to clinic and if they think enbrel not working they will put me on another biologic drug, i felt so bad in hospital before i went on the steroids and i know it's not ideal but it's great to feel almost normal again and have an appetite. That is great that you are on the enbrel now bsk i really hope it makes a difference to you and allows you to get off the steroids. I read on the leaflet inside the enbrel pack to use the antiseptic wipe in a circular motion and let it dry before injecting, i did that last week and i found it did make it less painful, i also felt it better using the middle of the thigh quite high up. I hope you are over your infection lynn and starting to feel better. Take care. xx
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Date: 24.02.2012
From: rhona
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Subject: Re: approved for enbrel
I just read your post Lynn about then dent in your buttock, i got a dent in my shoulder last year and it looked quite bad and when i asked the rheumy nurse she said it was a side effect of the steroid and it can go away although it can take 6 months, i don't really notice mine now. x
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Date: 25.02.2012
From: bsk
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Subject: Re: approved for enbrel
Hi Rhona, welcome back! I'm glad you didn't have an infection and are feeling much better, I was worried about you! You really shouldn't worry about taking steroids for a short period like this, they don't really have a bad effect. It's just long term use that is dodgy. I was told by my nurse not to bother with the alcohol wipes! Indeed, another nurse at the hospital told me they've found it doesn't make much difference. Still painful though! Do either you or Lynn feel tired the day after the injection? Felt shattered yesterday and have had a headache since then. And, like you both, I find my joints are a bit more painful. xx
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Date: 25.02.2012
From: rhona
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Subject: Re: approved for enbrel
Hi Bsk, I haven't really noticed that i am more tired after the injection although i have heard that it is quite common to feel like that and also have a headache, i do feel better with the steroids and i am taking 7.5mg for 2 weeks then 5mg for 2 weeks then 2.5mg so i don't know how that will be when they are reduced next week, really hope you feel a difference soon. take care. x
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