has anyone been on orencia anti-tnf: hi there, I was on... - NRAS

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has anyone been on orencia anti-tnf

pjplant profile image
5 Replies

hi there,

I was on embrel for a number of years and my consultant thought cimzia would work better so he swapped me over, I was on humira before embrel and that did not work at all and the same can be said of cimzia,

I have been doing a bit of research and the 2 that have not worked are in a different anti-tnf group adalimumab-humira

certolizumab-cimzia in the same group as these 2 are

golimumab-simponi

infliximab-remicade

rituximab-mabthera

tociliuzimab-roactemra

the 1 anti-tnf that has worked for me was

etanercept-embrel and the only other anti-tnf in the same group I can find is

abatacept-orencia

could I ask if there is anyone that has been on orencia and if there is information on the drug?

any help would be greatly appreciated,

many thanks

pete

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5 Replies

The only person who I know has been on this one is Allanah who I'm sure will respond to you shortly.

farm123 profile image
farm123

Hi, Mine is sero-negative inflammatory arthritis which I have had for approx. 28 years and this is my biologic treatment - I can only really tell my own experiences. I cannot tolerate MTX, sulpha, aziothioprine or leflunamide. I had 7 years on Enbrel before it did not work enough. Tried Humira for 9 months, then Ritxuimab for 1 cycle - did nothing, Tociliuzimab for 3 infusions (over 4 months as had to miss one month due to neutropenia) - helped some had to stop because of neutropenia and low WBC.

Then Nov 13 went onto self inject Abatacept. Very slowly things improved but I had got very bad and mobility was still an issue, in June 14 we added in 200mg hydroxychloroquine. During August 14 I had steroid injections in L shoulder and both knees. So after a combination of adding in hydroxy and an extra boost from the steroid injections after 12 months mobility was improving and was starting to do more than I had been and this continued to improve. At the end of Feb 15 I had to stop due to having a knee replacement and because of a hairline fracture during the operation have not been able to recommence so hoping my body will accept it and stay on top of this disease. We probably kept trying this longer because my drug options are limited now and I am only 48 so I still have some years to go.

I think from memory the Abatacept attacks cells at a level above most of the other bio drugs. I have seen a type of flow chart with drugs and cell types somewhere but cannot remember where. Have added it to a post biological treatment and cells above. Farm

pjplant profile image
pjplant in reply to farm123

hi farm,

thanks for your reply,

sounds like you have been having a rough time unfortunately,

I started out with sero negative juvenile rheumatoid when I was 11, according to my rheumatologist I also have ankylosing spondylitis, curvature of the spine, osteoporosis, prostatitis amongst others, as I have had it from an early age like yourself what I had to start with has progressed in a multitude of ways unfortunately,

I am now 47 (48 on Wednesday) I see a consultant cardiologist on tuesday as the cimzia I am on has caused shortness of breath, tight chest and heart palpatation's, I then see my rheumatologist on Friday to see what anti-tnf he is going to put me on next?

I have failed on 2 mab anti-tnf drugs and the only other cept is orencia, I would gladly go back to embrel as it worked a whole lot better than cimzia, i was told by my consultant that cimzia would work within 12 weeks and if it didn't in that time it wouldn't at all, i am at 10 weeks now and its not worked and i also have unwanted side effects from it that i didn't on embrel,

it is very interesting to hear a similar story from yourself as you also have sero negative,

I hope you improve soon

all the best

pete

pjplant profile image
pjplant

thanks Georje, it would be great to find out as much as I could,

thanks

pete

Beverley-NRAS profile image
Beverley-NRAS

Hi Pete,

I have put a link below to our information on Abatacept (Orencia) for you. I have also put the link to our section on medication where you can find information on all the biologics:

nras.org.uk/abatacept-orencia-

nras.org.uk/medication

Currently in the UK there are 8 biologics licensed for use in RA. 5 anti-TNFs and 3 others which target different cells in the body of which Abatacept is one. It targets T-cells. The other 2 are Rituximab and Tocilizumab

Hope this helps

Beverley (NRAS Helpline)

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