Disappointed

[Crazyjo]

I know I got to give it more time but after feeling a little less stiff after my simponi injection last Friday. I now feel worse then ever. Very hard to see the light at the end of the tunnel. Just feel like hiding away in bed which I know is impossible and a silly thing to do anyway. Just want some relief from this disease

[Hidden]

Ahh Crazyjo, I am so sorry to hear how you are feeling today. It must be very disappointing. The only thing I would say is that reading through the drug information from ARUK on simponi it does say:

" If you respond to golimumab (simponi) you'll probably feel better in 12-14 weeks ( after 3 -4 doses)".

I appreciate that does seem a long time, especially when you are not feeling at all well, but I just wanted to give you some sort of reassurance that it is early days yet for you with simponi, so try not to feel too disappointed at this stage - I know easier said than done!

Take care

Sally

(NRAS Helpline)

[Crazyjo in reply to Hidden]

Thanks Sally I know I am being impatient. This is my 2nd lot of biologics and just feeling a little down today

[allanah in reply to Crazyjo]

Hey Jo, keep stronge my lovely . In the scheme of things it very soon to expect miracles. Your body takes time to react to the drug. Good sign was initial less stiffness. So don't give your body a harder time by giving it stress, cos stress equals a flare! Rest up, distract yourself and try to be patient my love( but you know we all feel like it !!) xxxx

[Crazyjo in reply to allanah]

Thanks allanah think just let things get on top of me last few days. Everything seems to be irritating me lately x

[allanah in reply to Crazyjo]

Hormones???!!!! lol xx you would hate to live with me then, just had steroid jab and have to be so aware as I get grouchy initially lol. I feel like the Hulk.... You wouldn't like me when I'm angry ha ha ! Mind you it does take a lot but when you light the touch paper I'm off like a rocket... Stand back xx

All will come good for you, I feel it in my joints lol xx

[Crazyjo in reply to allanah]

Ah bless you lol. Was hoping I would hear from occ health as they meant to be coming out but not heard anything yet. Don't know why I so irritated lately no specific reason for it. You looking forward to Glastonbury?

[allanah in reply to Crazyjo]

Oh yes!, Ian going flying whilst we r there so one bedroom full of flying stuff, the other full of glasto stuff yuk! But I'm lucky I have him and daughter to lift the stuff or me......yes excitement is building now xxx got my tickets they are marked crew/performer lol ...if only .......

[Crazyjo in reply to allanah]

That's good then. I'm not jealous much lol. I could do with a good night out with my mates if I had the energy would be good. Been thinking I like a man in my life just as don't go out much god knows how I am gonna meet one x

[allanah in reply to Crazyjo]

On line !!!

[Crazyjo in reply to allanah]

Did that couple years ago and met some men that were really not what they made out what they were. May try it again, thing is how far down the line do you tell them about the ra

[allanah in reply to Crazyjo]

It's not relevant until you r in some sort of relationship lol!

[Crazyjo in reply to allanah]

Think my walking stick might give it away when first meet them lol

[allanah in reply to Crazyjo]

Tell them you broke your foot ha ha!

[Crazyjo in reply to allanah]

I was doing that at end of 2009 when actually had broke my ankle lol

[allanah in reply to Crazyjo]

Oh gosh!! Maybe not then! What about a cinema pub or something like that? Or volunteer for nras or oxfam ? Lol x

[Crazyjo in reply to allanah]

Don't mind if they are local lol x

[allanah in reply to Crazyjo]

Sounds like an idea. But love this site we have gone from wondering if the drugs are working to setting u up with a bloke ha ha xx

[Crazyjo in reply to allanah]

All bit of fun takes our minds off more serious subjects lol x

[allanah in reply to Crazyjo]

Absolutely!! Xx

[nomoreheels in reply to Crazyjo]

There was a window of opportunity recently on here, remember crazyjo? Just tell me if I'm overstepping the mark! (seriously though I only want you to be cared for by someone other than family).

[allanah in reply to nomoreheels]

I remember!

[nomoreheels in reply to allanah]

Ha!

[Crazyjo in reply to nomoreheels]

Your not over stepping the mark lol. Don't think he even lived near me lol

[nomoreheels in reply to Crazyjo]

And..... your point is?!

[allanah in reply to nomoreheels]

Lolx

[Crazyjo in reply to nomoreheels]

Want company not long distant messages lol

[nomoreheels in reply to Crazyjo]

No jo, you're not doing this right. Ask, he may be closer than you think!

[Crazyjo in reply to nomoreheels]

Lol x

[nomoreheels in reply to Crazyjo]

You, girl are doing too much thinking & not enough doing. Any options locally?

[Crazyjo in reply to nomoreheels]

Not that I have noticed

[Beaches2]

Hi crazyjo

Am sorry to hear you're feeling bad at the mo, I'm sure as others have said it's just a matter of time before you get some real relief so you feel up to getting out and about again.

Have you looked in your local area for any interest groups that you might enjoy......perhaps non physical things for now like a book club? Computer courses etc, libraries are often good places to find out what's going on. May not get you a man, but at least it gets you out and meeting new people which can sometimes lead to other things?

Hope you feel better soon x

[Crazyjo in reply to Beaches2]

Thanks beaches2 I haven't really looked about if I am honest

[Hidden]

Hello

The new group clinic I attend we can ask for a jab if we think we need it.

Really sad when you think of it!!. The only thing to look forward to, a needle in the bum, I suppose I need to get out more

BOB

[Crazyjo in reply to Hidden]

Bless ya lol

[lilianisaac]

I know how disappointing it is when you've been feeling so unwell for so long, and the expectation of taking new medication when it doesn't work as well or as quickly as you would like. It's very early days and hopefully the meds will kick in for you soon. I also believe that stress hinders RD and is the enemy so try if you can to stave this off. I am so sorry you are feeling like this and will be thinking of you. Pat

[Crazyjo in reply to lilianisaac]

Thanks pat

[julie_warwick]

know how you feel , week 6 for me of cimzia and feel as bad as ever , you put all your hopes on these drugs and then it's almost worse when nothing happens , try to keep hoping. x