Hi Rebecca - I started on 31st Jan, having failed cimzia, enbrel and rituximab. No side effects yet but no difference either and I'm going to have to stop in 2 weeks while I have the foot op. Hope it works well for you xx Ailsa

so sorry to hear how badly you're struggling,

that's the trouble with each new drug, have to wait a good 12 weeks to see if they work,

i know others who no longer post have been on it, have no experience myself.

i know you're taking steroids, can you ask for a depo steroid injection to help tide you over? if they work, they can work very well.

Suzanne x

Thank you to you all for your helpful comments and support.

Just out of interest Ailsa, are you taking the abatacept by injection or infusion? I will be on injections. Did they give you any idea how long the drug takes to work? 12 weeks I have been told but reading the internet it could be six months. Best of luck with the foot op, I hope it is successful and you can get back on the Abatacept quickly.

Thanks for your advice Suzanne, can I have a depo steroid injection if I am taking a course of steroids? I will have to find out. I think I will just need a permanent drip of steroids to get through the next few months.

Glad the Enbrel is helping you Jane, out of all the drugs I have been on in 14 years Enbrel was by far the best. I was on it 8 years and then it stopped working. Abatacept is an infusion but it has recently been developed as a weekly injection which I have gone for because I live an hour away from the hospital and I can't drive far. Luckily the injections are not coming from hc@h as I have had a nightmare with them too.

Best wishes
Rebecca

Hi Rebecca - I am on weekly injections as I couldn't arrange the monthly infusions around work. I'm also on a research project at the hospital looking t the success of injections compared with infusions. I was told to expect improvements after 3 months so I'm only half way there and will only have on more next week before I have to stop for a while.

Hope you ar as trouble free as I have been and it works wonders for you too xx Ailsa

Did you have a loading dose on the injections Ailsa when you first started? It sounds like you are coping well on them. Best of luck with your op, how long will you have to be off the Abatacept for?

Zena, that is really encouraging for me to read your post, how long did it take before you noticed an improvement? I am losing my mobility so quickly and hoping to start the treatment in a couple of weeks. Hope you have a successful recovery with your new knee. My new knees were fantastic until my drugs stopped working. Have you been off the Abatacept long?

Thank you again for your comments. It helps so much to read other people's experiences of these drugs.

Best wishes
Rebecca

Thanks Sophie for your thoughts and wishes. I am still waiting for the abatacept delivery. It's just such a nightmare isn't it when the drugs stop working. Have you had your other knee replaced yet? I can't believe how swollen my knee replacements are at the moment, doesn't feel like they are replaced now Just hoping new drug will work,I am living off steroids at the moment.

best wishes to you
Love Rebecca x

Hi Sophie,

One possibility is that the pain in your right hip is caused by you compensating for your right knee. If that's the case then maybe when your knee is done your hip will improve? (I'm trying to look on the bright side here! )

Hi Paul and Rebecca ,

the nurse said that to , i just can't understand why I can be in really bad pain in my lower back and hip area (more than my knee) and have to get knee done first ! That's really good news that the pain should subside when my mobility improves Rebecca .

Been ringing consultants secretary but she is not answering phone , will try on Monday now for results of X-ray .

I agree May is a good time for op , seen consultant in January could of got it done earlier but my sister is due to have a baby in 2 weeks ,so my mum and other sister will have to help her ( she already has a 15 month baby boy ) and my sons is nine in April so didn't want to be in pain for his birthday .

Good to know hips are a lot easier than knee ops

hope you get the Abatacept soon and it works quickly for you Rebecca ,

Sophie x

Hi Rebecca,

Yu can have a depo injection if you are on oral steroids, they will just lower your oral dose after your injection.
They do make a big difference and last quite a few weeks if you're lucky.
Worth a try!

Gogs

hi Rebecca,

i think you can have depo injection with a 6 week gap from memory.

i've had about six , three worked well and three didn't. i came out in hive's with the last two not many but enough to put me off.

good luck,

Suzanne