Where's my miracle??
6 weeks ago today I left hospital after 9 days on the ward.
I couldn't stay anymore as there was no more they could do for me and my mum agreed to administer all the drugs and nurse me.
As some of you know I haven't been on here in a while as I have and still am quite poorly.
I still have oral morphine every 2 hours and need my wheelchair to even get to the toilet.
Aged 24, I need my mum to wash and dress me even get up in the night to take me to the toilet.
I take a lot of medication and whilst in hospital I finally qualified for enbrel. Week 7 of the injections and I haven't seen any change what so ever, in fact my elbows didn't hurt before and now they do so I'm worst.
I've read all about these miracle anti tnfs. Where's my miracle??
Having seen no improvement and still being in pain I went to the consultants yesterday, I was there an hour and the only thing I came away with was an appointment in 4 weeks because I need to wait the full 12 weeks to see if it works. Somebody please tell me this is wrong???? I can't live like this for another 4 weeks.
Also since my last injection I have developed a strange hardness all over my body. I am on 40g of prednisalone which had already made me balloon from a size 12 to a size 20. I was fine with this it was liveable. This new hardness is so painful and restrictive, I look like a little wrestling figurine if you don't laugh your gunna cry hahaha.
Has anybody else had this hardness? Is it a reaction to the enbrel?
I spoke to the consultant who just didn't really respond about it and brushed it away which makes me think it is a reaction to the enbrel but she doesn't want me to stop it just because of that and won't say it to me?
As you can tell I'm totally confused by the hardness. It looks like hard cellulite, all over my arms, thighs, belly and I look like I've had a boob job because of the hardness of them.
I went to my gp today who took one look at me and said my disease is out of control and she is not even gunna look at me, I am too ring my consultant first thing in the morning.
Please help, even if you think it's unimportant please post incase it helps.
Also apologies to everyone who was worried about me and messaged me. Thank you all for your thoughts I wasn't being rude I just haven't been able to type.
Off to rest my little fingers now.
Fingers crossed some of you no about my hard wrestling figure
Hi there, I can't offer any bright suggestions - just masses of sympathy. It sounds absolutely awful, and I feel for you. You must keep asking for more from the health service as it sounds as if you really need them to pay full attention. Good luck & hope your miracle arrives any second now. Polly
My Dear Marnie.
I am amazed by the fact you are still so postive.. well done you!
The Gp should have looked at you!. im afraid most of the Ra drugs take 3 months.. mine took almost 6 months !gold injections is one of the slowest.. but I have had benefit for the last month now..!
You will get there i promise, if not with enbrel then with something else, I wasnt given the chance of anti tnf,, my nhs v poor no money!
I too put on weight with the steroids it isnt great but they help until treatment works.. im nearly off them so can try and start to try and loose weight but im under no illusion it will take time!..
I am afraid I dont know what this " hardness" is
Alison, thats great your starting to feel better, delighted and long may it continue! x
sorry is this computer being silly?. incomplete reply
I am thinking of you and sending my best wishes
My positivity has been sparse that's why I haven't been on here I didn't want to put a downer on anybody or anything.
The steroids made me balloon so quickly in like 1 hour my bra was too tight lol
I'm just worried about the hardness.
It All takes soooo long too. It's hard to see the light at the end of the tunnel.
How have you been? Xx
Thats what we are here for to support you when your down like you are at the moment. So come on here and rant all you like we will try and cheer you up as best as we can. Lifes s""t when you in constant pain like you are and so young. Keep blogging and we'll all answer you.
oh Marnie, I have thought about you often and was a bit worried that we hadn't heard from you, your so amazing and I feel so sad that enbrel hasn't worked for you, yes previously you have been positive, even from your hospital bed but you say you haven't been on here as you didn't want to put a downer on anyone, I don't mean to nag Marnie but why shouldn't you come to us for support? you have always given us sympathy, advice and support and your so young yet suffering so badly!!!!
flip sake I'm so hormonal
I'm sorry I can't answer the hardness question either but you really do need an answer from your consultant, let us know how you get on xx
I'm back now! I no I should of kept on coming on here, quite nice chatting again to everybody.
Hormonal?.. I'm thinking of taking out shares in Kleenex.
PM me if you wanna chat espec about the work thing, I no how horrible bosses can be.
My mum is going to call the consultant tomorrow so fngers crossed. Just worried as it's around my neck and I don't want it to effect my breathing.
Mums mean business
How's your little one? X
morning, how are you today?
Little ones great, starting to walk now and I'm ever so glad I'm able to keep up with her!
argh stupid boss people, when I see what your going through it makes it all quite trivial, thanks for the offer, you may be sorry for the offer!lol
Your Mums sounds great, just what you need let us know how it goes xx
Hello, Marnie, sorry about your disappointment with Enbrel. This is a drug that has a too high expectation. I have had this for 2 years now, and I can't dispute that it's made a difference, although never to the level that I supposed (when it was originally mentioned to me two years ago), I thought it was going to give me wings!