Hi all
After all this time I still haven't had any treatment! Supposed to be switching from rituximab to abatacept but just don't like the look of the risks involved.
Has anyone gone backwards in their treatment regime like back to methotrexate from biologics?
Thanks
In my experience biologics cause me less problems and many people less side effects than DMARDs. I was more concerned trying Rituximab than going onto Abatacept. Currently been on Abatacept for 10 months and although better than I was I would like a little more control. Farm
Have gone from rituximab to enbrel and now on humira. However, I have stayed on MTX throughout.
Out of the three of them, I found the list of possible side effects most frightening for rituximab. You've coped with that, so I don't think you'll be unable to do the same for abatacept, although I have no personal experience of it
However, as I said, I have stayed on MTX from the start of my treatment, so I don't think you would be "going back" but perhaps adding it in again. It could be a positive move, if your docs think it's appropriate.
Whatever happens, I hope you find something that helps soon, I know how dispiriting it is when things don't work. It's sometimes such a long road with this disease.
Best wishes. M x
I also stayed on mtx while moving from 2.5 years of Embrel to a short time with Humira, which I stopped to have a surgery and never restarted. I am not taking any biologic at this time, just mtx and 500mg of Naproxen twice a day. And Tramdol 3 to 5 times a day for pain.
I wouldn't be on anything but mtx so theoretically I would
I would be on mtx mono
Thanks both.
The side effects aren't a problem in terms of nausea etc its the long term risks.
I know the risks attached to rituximab look scary but the cancer risk with abatacept is harder to deal with as it's much higher than say the pml risk with rituximab which is only 1:125000. Ok you definitely do not want to be that 1 !!
Hobson's choice isn't it?
I'm afraid I got to the stage of not looking too deeply at the side effects as I just needed something to work to be able to have a life as I am only mid 40's and started mildly at age 19. Been through Gold, Enbrel, Humira, Rituximab and Tociliuzimab. I cannot tolerate MTX, Sulphasalazine, Aziothioprine or Leflunomide. Farm
M, we're you not offered abatacept after rituximab?
Hi I am on methotrexate, and steroids at the moment, but have tried enbrel, humira, toxicilzumab, rituximab and currently on abatacept, but my issues are lung problems, at the moment am now on permanent treatment for blood clots on the lungs, I have had continuous lung infections since starting the anti tnfs so not sure what to do now! Haven't had an infusion for 4 months as we are in limbo, the respiratory clinic says they are seeing more ra patients with problems than five years ago! so I understand your concerns.
It's hard deciding for the future what to take to get the balance right, the steroids are a great fix, but the weight gain is no fun 
Hope you all have a good day x
Is it mtx that's caused the lung problems gillclarke1?
I am in the same delema .the drug has taken since june to come and still no sign. Im having second thoughts i have already been backwards once but it didnt work chrisx
Hi, I'm waiting for funding for Abatacept (I've skipped Rituximab due to being seronegative) It is funded for use with Mtx, which I can't tolerate so will have to wait and see. I thought the cancer risk had been downgraded for all the biologics and anti tnfs. I read a report somewhere. I'll see if I can find it. I did go back to dmards after getting side effects with Enbrel (which was great for me) but my liver couldn't tolerate them.
here's the article I read in Arthritis Research
arthritisresearchuk.org/new...
Thanks urban fox!
However, she added the exact relationship between biologics and cancer in RA patients is unclear and further research is needed to better understand any potential connections. - See more at: arthritisresearchuk.org/new...
Do NRAS have any evidence such as the paper below about cancer risks being minimal as it is a worry to a lot of us?
hi marie
There seems to be risks with all the drugs, how much of a risk, do they really know? I have been on abatacept 6 months, it took a while to kick in but last month I had an unbelievable CRP reading of only 1. Unfortunately in the past week or so my inflammation has gone through the roof so that was a short lived pleasure. Seen my rheumy this week and only way I can stay on drug now is if I increase the methotrexate dose, which I don't tolerate at all well. I wish you the very best of luck with abatacept and hope it works for you.
No they really don't know unfortunately I'm just trying to find a safer alternative if there is one
Hi Marie
I understand your concerns. I was at clinic on Tiesday and it's thought that I am not getting an adequate response from Rituximab anymore ( I've had 11 cycles in 7 years) so may stop it and go on Tocilizumab which I know nothing about. I was very scared about going on Ritux and I had 15 months waiting for nice to approve it but now I don't worry so much as the alternative is being in a wheelchair and dependant on others for most things. I'm only 47 years young and want to have mobility and function while my son is young. Then hopefully he can look after me later lol.
Good luck with your decision kikidilili x x
T cells are killer cells. They help fight nasties. If abatacept interferes with this process I don't see how they're can't be an increased risk. Such a minefield !
Thanks all for your input. Greatly appreciated xx
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