In the UK it is known as Abatacept but in Canada it is known as Orencia.

[Angels-delight]

I am on Tocizumab injections at the moment but will be starting on Orencia infusions first then I can have injections if all goes well. I have received my welcome pack and waiting for a call to advise when the nurse will come to give me the infusions in my home. The tocizumab injections have stopped working since I had to stop them due to me having a chest infection and take antibiotics. The injections didn't seem to work as well as the infusions which were brilliant and I felt they gave me a new life.

I am hoping the Orencia/Abatacept will give me the pain relief I need so I can start to enjoy life again. If anyone has been on this medication I would appreciate your feedback either way. I know everyone reacts differently but I am interested to know if it helped others with RD.

I hope everyone is feeling better now we have some warmer weather and sunshine.

Take care, Sue

[Mellisa1066]

Hi Angels-Delight

I take Abatacept for about 6mths now .

4 weekly infusion at hospital but I know once your settled and doing well on it you can go onto monthly injections at home.

I have a blood test 3-7 days before each infusion each mth , to test your white cell count etc

It took for me about 8weeks and then it literally started to change my life as I couldnt get up and downstairs before, couldn't walk far at all and was in a wheel chair if needed to go far and using a stick before this treatment started. Now I use no support.

Of course I still get a bit rough when next infusion is getting due , and if ive had a long day on my feet then all my joints will ache at end of the day as you would expect , its not a total miracle but its made my life worth living again pain wise. I have my independance back.

My pain relief has dropped dramatically. Was on alot of opioids as due to kidney problems I cant take anti inflamatory pain killers. Now can get away with cocodamol just mainly in morning and night. Rather than 4hrly and no Oramorph anymore etc

I also dont need help by my husband with tablets in the morning as so stiff I cant move and getting me out of bed and help me shower etc ( thats how bad things had become) only able to hold plastic cups with a straw .

I feel normal again. Incase its something you want to know im normally a very healthy woman, 41yr old and only a slim build.

Did used to go to gym every day , yoga 3 times a week until Arthritis and my Lupus and Sjogrens kicked in badly.

Since the Abatacept has kicked in and working so well ive even started doing gental yoga again and thinking of re joining the gym under supervision.

I have also found no weight gain problems or puffiness with the Abatacept like the constant steroid injections i was having.

Hope this has been some help .

If you want any other info please message me or personal message me.

Good luck, hope it works as well for you.

Melllisa

[farm123]

Made a complete difference to my life - I had failed Enbrel, humira, ritux, and toc. I am on weekly self-inject. I was on very limited mobility and very limited in what I could do. It took 9 months with the addition of 200mg hydroxy at 6 months to work but it was from a very low start. It does take my WBC and neut level down lower than the range but generally I am fine (for the last 2 years anyway except just at the moment have some respiratory issues with a cold) so they are (were) happy for me to continue - I have a rheumy appointment Monday.

[Angels-delight in reply to farm123]

Hi Farm123, I hope you will feel better soon and get over your cold. I appreciate your feedback and makes me have something to look forward to and get my life back again so I can enjoy time with my family.

Take care, Sue

[Lucy11]

Hi Sue,

It took between 7-8 months for me to see a noticeable improvement. Felt loads better after 3 months but now I'm pretty much in remission.

Before RA I was a competitive athlete and when RA hit I wasn't able to do much at all and became an emotional and physical wreck.

I'm back training again and haven't had any side effects at all from Orencia. My hair has thinned a lot from MTX and adding more folic acid didn't help so we lowered the dose to 12.5 SC injections and so far all is ok.

I wish you luck. It may take some time for you to notice a significant change but hang in there. I hope it works for you.

[Angels-delight in reply to Lucy11]

Thank you for your response I look forward to getting some relief even if it takes 3 months.

Take care, Sue

[kaypiercy]

Hi

I have been on Abatacept for nearly a year and yes it took about 3-5 months before I had any positive signs that it was making difference. But now, 9 months later, I am back at work, I can easily walk up and down stairs, reach to the top of cupboards, tie my shoe laces and open a can a beans, as well as un-screw a bottle top 😊 🥃. I still get stiffness in my hands in the morning but this now quickly clears. For me Abatacept has changed my life for the better. I continue to take Methotrexate 20 mg. Now I only see my rhumy every 6 months. I have not needed steroids since before I started on Abatacept.

I also had been on Embrel which didn't work so just goes to prove don't give up hope or stop trying new meds.

best wishes to all

Kay

[Angels-delight in reply to kaypiercy]

Thank you I appreciate your feedback it gives me a reason to feel positive about the new medication. Take care, Sue

[Angels-delight]

Thank you to everyone who responded to my blog regarding Orencia /Abatacept infusions and injections.

I am suffering with the worst flare up which don't ease until the afternoon and the pain meds plus ice applied to all my joints. I only go out by taxi to doctors or blood test appointments as it is too painful to walk, which is not like me. The weather in Canada is starting to improve and would love to go for a walk. Hopefully I will be able to very soon once I start the new infusions.

Thanks again for all the feedback from everyone it is greatly appreciated. I hope you are all feeling the best you can. Take care, Sue

[Mistydawn]

Hi Sue, I took Abatacept by weekly injections for 14 weeks and it was brilliant. I went back to being my normal self within weeks with no side effects. Then I started getting headaches/migraines after 14th injection and stopped injecting on the advice of my rheumatology specialist nurse. I am seeing my consultant tomorrow to see where I go from here. My RD still seems to be much improved from last year - this could be maybe because Abatacept may still be in my body.

I hope it works for you. I was disappointed I had to stop as I it was so good.

Mistydawn

[Angels-delight in reply to Mistydawn]

Hi Mistydawn,

Thank you for responding to my message, sorry to hear you had 2 stop the medication. I hope your Rheumy can help you tomorrow. Let me know how you get on.

Take care, Sue