Frustrated

[Crazyjo]

Don't thing the abatacept infusions are working as in so much pain. Worried I am going to run out of options soon!

[cathie]

This is my second attempt at an answer. I had similar worries and wrote to nras last week. Beverly sent me some reassuring ideas and research about combinations which put my mind at rest a bit. Could you ask her? Or if she reads this maybe she could share her answer? I can try once I get onto my computer. please try not to worry, things are moving on all the time

[Hidden]

Hi Crazyjo, as cathie suggested, you can speak to our helpline team today on 0800 298 7650 or email [e-mail] if you prefer.

Take care, Ruth

[allanah]

Hiya CJ

I'm so not surprised after all you have been through that you are feeling impatient ! It's a long job getting this illness controlled for some but for others a few weeks into mtx and they feel fine.

I wish there was a blood test that says , if you take whatever this is the one for you ! At the minute it's the theumys job ....... And dare I say hit and miss. Give it more time and yes if you can do chat on the helpline they r amazing . Xxx

[Crazyjo in reply to allanah]

I have emailed the chat line. Also called rheumy team as in right state with pain today waiting to see of can have steroid infusion x

[farm123]

It took many months for Abatacept self inject to start making enough difference for me. Started Nov 13, added hydroxy 200mg June 14, had both knees and R shoulder steriod injected Aug 14 and slowly things began to improve. If this drug had not been one of the last available to me we would probably not have persevered. I am not saying I am back to 'normal' but in comparison with the previous 2 years much better and was beginning to get back on track until having to stop for a knee replacement. Farm

[Amy-N-S in reply to farm123]

Thanks so much for this, Farm - I'm 7 weeks in to Abatacept injections at the mo, and not feeling any benefits yet. I'm starting to have a bit of a wobble about feeling positive, having had nothing but side effects and disappointment on the full range of DMARDs, but your post encourages me to stick with it for longer before I start to worry.

[Hidden]

Hi crazyjo,

If you want to send an email to [e-mail] and mark it FAO Beverley, then I can email you the response I did for Cathie which as she mentions covers the similar concerns you have. Just put a little bit more background in for me and I can make sure I tailor it for you.

Regards

Beverley

[Hidden]

Hi Cj

I'm in the same boat as you. I am on Rituximab and it can take a long time to kick in for me. I am given a steroid infusion with it but unfortunately getting side effects with the steroids so didn't have any with my second infusion on jan 27th. My feet are so sore. These drugs can take a while but often when the kick in they are brilliant. Ritux works well for me. I hope your meds kick in very soon.

Take care KiKi x