Info on orencia

[whirlygirl]

Hi everyone, Is anyone on orencia and methotrexate? I am being switched from Enbrel to orencia and am a little frightened of this drug. It seems the older you are, taking this drug, the higher the chance of cancer. Any information or personal experience on this drug, will be very much appreciated. Also, have large bakers cysts behind both knees. Right one causeing a lot of leg pain. Any on have ant suggestions?

[farm123]

Hi, I'm have been on Abatacept (Orencia) for the past 12 months and added in 200mg hydroxychloroquine 5 months ago.

Many of the biologics appear to have a higher risk of cancer but I do wonder on the age of people when the studies were done and whether there were genetic factors involved as well. I think there was another fairly recent study that downplayed the cancer risk but our immune systems are rubbish anyway so I suppose we could be more at risk anyway.

At the time of starting I was desperate for something to work (having tried 3 other drugs in 2 years) and needing to find some quality of life for family and myself (only late 40's) I probably did not think about the side effects to deeply.

I know nothing about Bakers cysts but I have a lot of swelling around the knees and my team drain the fluid and inject steroid which settles things for a while and eases movement and pain. Farm

[whirlygirl in reply to farm123]

Hello farm 123, thank you for answering me. Have you had any side effects from this drug? I also have tried so many drugs, Enbrel being the latest one. They all scare me. My rhumy told me that seven out of a thousand could get cancer, but said this also could happen without taking the biologics You are so young to have this. How old were you when it reared its ugly head? I have great trouble taking these biologics as I hate messing with my immune system. This is a big problem for me and I am not doing well overcoming it. I think I drive my rhumy crazy as he keeps telling me, this isn't going away on its own and I must take these meds. Do you have a swelling behind your knee? If so, this could be a bakers cyst. I have one behind each knee. The left one doesn't hurt but the right one is very painful, just hope DR. can do something about it. Thanks and take care!!

[farm123 in reply to whirlygirl]

Generally I have found that the Anti-TNF/Biologic drugs create less problems for me in relation to side effect than the DMARD's. The only DMARD I can tolerate is 200mg hydroxychloroquine. Blood testing for biologics is much less frequent compared to DMARD's but if you are on MTX you will still need regular testing. Unfortunately this disease will not go away but untreated will march much more quickly through the body. I was 19 when it started in the left knee. My swelling is in the front of the knee which has been drained and injected many times. I had a synovectomy done on the left knee 3 years ago to try and reduce the amount of tissue in the joint but am now waiting to see orthopods again about the damage in the joint. At the end of the day nobody can foretell your future health and whether you would have contracted anything with or without the drugs - you just have to live the best you can for now. Farm

[whirlygirl in reply to farm123]

hi farm, you do give good sound advice and have such a great outlook, which with this disease is hard to do. You have had ra since you were 19 years old? I guess I shouldn't be whining as that is so young to be inflicted with this terrible disease. Your advice and most of all how you look at all this, has certainly pointed me in the right direction. Now the battle with myself starts. I will likely turn to your words when it gets tough, Thank you!!

[Metal-legs]

I am taking orencia with methotrexate. I have been on orencia for 8 months now. It was working brilliantly over the summer but has lost some effect so I am trying to increase the methotrexate at the moment.

I can understand you are feeling apprehensive about starting a new drug, but try and focus on how much it will improve your quality of life. I've not had any side effects at all from orencia. I wish you all the best with it. I have heard Bakers cysts can be extremely painful, can you have it drained?

[whirlygirl in reply to Metal-legs]

Hi metal-legs and thank you for answering my question. It is good to hear you have had no side effects, this helps for sure. Was on Enbrel but no luck with it.Ra drugs scare me to death as I don't like messing with my immune system. I really have a very bad mental block where these drugs are concerned and I think I drive my rhumy crazy at times. I told him I am waiting for this to go away on its own, he said that isn't going to happen. Didn't like that response. These baker cysts, apparently can be caused by ra and I have one behind each knee. The right one is very painful. They can be drained but usually , come right back. Hopefully they can do something for this I really hope you can get your drug working for you again, as this disease is so terrible to live with. I sure do wish you the best in finding relief . thank you and take care!!

[Metal-legs in reply to whirlygirl]

Hi whirly These drugs still worry me after 15 years but without them I am completely bed bound, in suicidal pain. I wish there was a safer option, and unfortunately the disease is here to stay. I am not keen on methotrexate too but I am trying to visualize injecting bright sunshine into me, as it's so yellow. Helps me focus on the positive effects of the drug, not the nasties. I hope you can get some relief, I am sending you lots of positive thoughts and hoping you can find a way forward.

[whirlygirl in reply to Metal-legs]

Hi Metal-legs, My heart goes out to you and I pray this drug will give you the relief you need. Injecting sunshine? Hold that thought, it may be the answer. It is so hard staying positive while fighting this disease, but you seem to be doing , just that. Your words give me some strength. the old saying, if you can do it , I can to. I will give it my best shot and mean while you will be in my prayers. thank you, hugs!

[Crispe]

Hi I have started The drug last week but I can't take methrotrate due to my lungs.i think u are better off not reading side effects. Nothing else has worked for me so anything is better than nothing all of them have cancer risks chrisx

[whirlygirl in reply to Crispe]

Thank you Crispe for answering, it is very appreciated. Are you having any side effects from this drug? I also think you are right on reading the side effects, as I am already scared skinny. I have tried so many of them and would just like to toss them all. Did methotrexate cause problems with your lungs? I take 25 of metho by injection and just hate this drug. All in all, these ra drugs are very scarey. Anything that messes with my immune system, doesn't sit well with me. There doesn't seem to be any safe answer to this disease. As I told my rhumy, I am just waiting for this ra to go away on its own. He told me it wont. Not what I wanted to hear lol

[Crispe in reply to whirlygirl]

Hi I have had two injections so far no real change yet but mine was so out of control due to lost prescriptions that he wasn't expecting any improvement until end dec. good luck