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Abatacept (Orencia) Options
Rebecca D
#21 Posted : Sunday, March 23, 2014 5:18:44 PM Quote
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Many thanks Suzanne for your advice.
Best wishes Rebecca x
zena_mary
#22 Posted : Sunday, March 23, 2014 9:21:12 PM Quote
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Sorry, just caught up with your thread.
I had been off abatercept for 3 months, altogether, it shouldn't have been that long, but my op had to be delayed.
It only took a couple of months for me to see some benefit and then it gradually improved more and more.
Hopefully after my next infusion, the week after this I will see some progress.
I am managing the physio really well, but still feel there's a long way to go with the knee.
It is still very tender and stiffens up quickly. Would like to be able to walk further than I can, think I just need to be more patient! Smile but saying that I have come a long way in the last 7 weeks. How long did it take you to feel the real benefit of the op?
Zena x
Rebecca D
#23 Posted : Wednesday, March 26, 2014 3:53:43 PM Quote
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Hi zena

Knee replacements take longer to heal than hips. Sounds like you are doing really well, 7 weeks is still early days, if you keep doing the exercises and build on the walking very gradually you will keep seeing an improvement. It really tests your patience doesn't it? It will feel tender and stiff for a while yet. My first knee was fabulous after 8-12 weeks. My second knee got infected after a month,took ages to clear it. Then I lost the bend, had to have a manipulation under anaesthetic. It took nearly 18 months before my mobility really improved but that was due to infection.

Just out of interest do you take methotrexate with abatacept? Have you had any infections on it?

Best of luck with your new knee, hope it keeps improving.

Best wishes
Rebecca
zena_mary
#24 Posted : Thursday, March 27, 2014 11:20:01 PM Quote
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Hello,
Yes, I was on 22.5 mg inj. mtx, but it was reduced to 20 mls because I was doing so well with the infusions. Don't know whether it will be reduced again once I have been back on the infusions for a while.
Touch wood, I do not seem to be too bothered by infections etc. I just get the occasional cold. I am retired now, but did work in schools for many years and it seems to have made me immune to many bugs!! Plus the fact that I have 6 grandchildren and often do the caring when they are off ill. I realise that for many people with ra, infections are a big problem once on the drugs, but the ra still seems to keep my immune system on high alert to fight off germs. Though I should not speak too soon Smile
Thanks for sharing your experience with knee surgery, it makes me feel more reassured that I will get there in the end. I think because 6 weeks seems to be mentioned as the recovery time, my expectations have been too high. Smile
Zena x
jewelsh
#25 Posted : Friday, March 28, 2014 9:59:42 AM Quote
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Hi Zena
Glad to hear you are doing well with your knee. I think you are right about high expectations after the "6 week recovery" I am just on 6 weeks now, also doing well but the goal posts seem to have moved to a 12 week recovery by both consultant and physio! It's hard being a patient patient!!!

Julie
zena_mary
#26 Posted : Friday, March 28, 2014 6:56:16 PM Quote
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Smile Perhaps we are not told the full story in case we are frightened off!! Smile
Hopefully it will be worth it in the end.
Take care xx
Rebecca D
#27 Posted : Monday, March 31, 2014 12:04:16 PM Quote
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I have been waiting 3 weeks now for my Abatacept delivery. Phoned the hospital today and they advised the prescription was sent 10 days ago to the Bupa delivery company. Spoke to Bupa and they have no record of it. This is a good start, was hoping that Bupa would be more efficient than hc@h!! Hospital now sending another prescription. More waiting....more swelling...

Anyone else had experience of bupa?

Rebecca
Blue Star
#28 Posted : Friday, April 04, 2014 12:12:22 PM Quote
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Hi Rebecca ,

Not had experience with bupa, but the same thing happened to me when I was waiting for Enbrel . Hc@H said that prescription had not been sent , so I rang rheumy nurse to tell them no prescription was sent and the nurse was horrid , said do you think we are lying about prescription being sent !

Hope you can get it sorted out soon , and get some relief from the swelling .

Sophie x
Rebecca D
#29 Posted : Friday, April 04, 2014 4:58:12 PM Quote
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Thanks Sophie for your message. I had the same with enbrel too, these delivery companies just don't appreciate the urgency. That was so unfair what your nurse said. Well the hospital have sent out another prescription. Bupa had no record of that either last Wednesday. Anyway somehow it's all sorted now and looking to start Abatacept next Tuesday.

Rebecca x
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