D-Day has arrived..
stlucia
Member Posts: 392
Hello, well today is finally here, the day where I can go back to the clinic and tell them how oh so wonderful Humira is and how I am now rock climbing and running marathons...oh but they did say I could have been better by Christmas when I first started injecting it....
HOW WRONG!
I will crawl into the clinic or maybe even drag myself on the ground as my arms and legs are too bad to crawl. I will most likely cry when they ask how it is going and I might just have a sit in protest until they find some medication combination that will get me out of this year long uncontrolled flare up. I am exhausted and in a lot of pain even though I have been on steroids this last week as well. I'm on the top dose of Mtx, naproxsen, Humira, prednisolone, paracetamol and codiene.
Please would you sit in my pocket this morning so that I don't feel so on my own in this appointment trying to fight my corner..
Thank you,
Lucie x
HOW WRONG!
I will crawl into the clinic or maybe even drag myself on the ground as my arms and legs are too bad to crawl. I will most likely cry when they ask how it is going and I might just have a sit in protest until they find some medication combination that will get me out of this year long uncontrolled flare up. I am exhausted and in a lot of pain even though I have been on steroids this last week as well. I'm on the top dose of Mtx, naproxsen, Humira, prednisolone, paracetamol and codiene.
Please would you sit in my pocket this morning so that I don't feel so on my own in this appointment trying to fight my corner..
Thank you,
Lucie x
0
Comments
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Will be with you St Lucia, tell them how it is and don't hold back. Are you taking someone with you? If not you'll have us in your pocket for encouragement. I do hope you get some answers and that you finally get this flare under control.
Thinking of you hugs Poppy X'grá agus solas'
'Love and Light' translated from Irish. X0 -
Morning stlucia
I am ready to sit your pocket and am prepared for the sit in.
Good luck hope you have a memory jog list of all your discomfort.
Sorry that the humira hasn't lived up to your expectation, maybe they can add something along side it.
Keep your chin up
Take care
juliepf x0 -
I will be there for you in your pocket. If it's any help, my 1st anti-TNT failed too. I then went onto Rituximab which then failed as well. But I moved onto Cimzia which I started in January and fingers crossed it is helping after 18 months permanent flare. So please do not give up hope, as you will be offered another one to try Lucie.
Give em hell girl and tell them it hasnt done a thing to help and you want something else.
Good luck, I'll be there
Janie0 -
Janie thank you for the encouragement. I'll do my best! I'll let you know what happens when I come out. How do you take Rituximab and Cimza?
x0 -
Hello Lucie
Rituximab is by infusion in hossy, takes about 6 hours for the first one, then you have another two weeks later. The infusions lasts 6 months approx.
Cimzia is the same as Humira
Janie x0 -
I am so sorry it has not worked for you and you are still in so much pain.I am sure they will try something else and that might be the ONE.
It has been a long time trying something that is clearly not helping but they say it can take up to 12 weeks to work.
I will be with you today (have a teachers meeting at 1.40 so I might not be paying full attention at this time). Lets hope they will continue to try and find a medication that can help.
Best wishes
ElizabethNever be bullied into silence.
Never allow yourself to be made a victim.
Accept no ones definition of your life
Define yourself........
Harvey Fierstein0 -
You know my feelings about humira. Why the **** do they promise the world before one starts? That's the worst bit, the world failing to turn up. My experience of anti TNFs has left me feeling that they are not all they are cracked up to be, not by a long-shot, especially if one is a few years down the line with this dross. In some ways I am actually quite pleased that this is my final one.
It will be interesting to see what they have to say. I don't think it's possible to be on more than an anti TNF, meth and steroids (and in my case the sulph too) but I hope they can find a different anti for you - humira was your first go, yes? If they offer another it won't happen for a while as the humira will first have to leave your system. Let us know, if you can, what they have to say.
I am so sorry, stlucia. I know how awful this bit is. You know where we are. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
Little update from me!
I am pleased, it was a really good appointment and I am going to start Enbrel in about 4 weeks. Let's see what this one does!
I'm going to relax now after a rather tiring morning.
Lucie xxx0 -
Hi StLucia
Sorry I didn't see your post in time to wish you luck for your appt but so glad it went well and you now have a way forward.
Really, really good luck with the Enbrel. I so hope it works for you!
Enjoy your rest this afternoon!
Love Tilly xxx0 -
Good luck with enbrel - there are quite a few on here for whom it has worked/is working really well. I hope you are able to join the HWE club (happy with enbrel). DDHave you got the despatches? No, I always walk like this. Eddie Braben0
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stlucia wrote:Little update from me!
I am pleased, it was a really good appointment and I am going to start Enbrel in about 4 weeks. Let's see what this one does!
I'm going to relax now after a rather tiring morning.
Lucie xxx
Sorry I missed the original post and threatened sit in.. lol
I am glad that you had a positive appointment though, hope the change in meds does the trick for you..
Look after yourself and be wellMe-Tony
Ra-1996 -2013 RIP...
Cleo - 1996 to 2011. RIP0 -
Hi stlucia
Oh my love I am so sorry it didnt work for you, like DD says they promise you the world, I think they should be a bit more cautious in what the tell people, because everyone is so different when it come to meds.
I am really glad you had a good appointment, I will have everything crossed for you....painful but I will do it
Good Luck
Love
Barbara xxLove
Barbara0 -
Hello St Lucia
I am so sorry the Humira didn't work, but am keeping my fingers crossed that the Enbrel will be the one for you ...
I am hoping to start Humira in 2 weeks, so you post was of great interest to me!!
Marion0 -
Sorry I missed the original post, but sending you lots of luck for the new meds when they start.
Cath0 -
Now that is great news for you Lucie!
They seem to moving things along quickly for you which is great
I wish you lots of luck with Enbrel
Janie x0 -
Hi Stlucia,
Oh flower what a shame you have had to go through all this. I hope the steroids help while you are waiting for the Enbrel starting date.
There have been some positive posts on the forum about Enbrel so hang on in there; fingers crossed this summer will be a good one for you.
Lv, Ix0 -
Hi
Just sending wishes that your meds work in your favour in the long term and that the steroids help out too
Cath0 -
Thanks for all the encouraging messages everyone. Yes let's hope that Enbrel is the one for me! Is there anything I need to know about it? How is everyone on this beautifully Spring-like day?0
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Hi Stlucia.
i hope this new one works for you.
pain gets you down there's now getting away from it.
good luck. joan xxtake care
joan xx0
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