Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

2,179 Members

16,355 Posts

0 Online

chuckbaxter 08/20/2015

I had my second infusion of Actemera today. As usual after the infusion saw the Rheumy. I'm having problems with my feet swelling again, didn't have much problem with this on Orencia plus a lot of stiffness and tenderness in the joints. Then he is reviewing my blood work and hits me with Liver #s are up, in all the years of doing this this is the first blood work I have had any problem numbers with anything. This concerns me, I'm wondering if anyone else out there starting Actemera or having been on it had liver fluctuations or problems. He asked me what pain meds I'm on, I told him, he seemed really puzzled and concerned. Not the kind of visit I enjoyed leaving. Thanks, Charlie

chuckbaxter 08/20/2015

Should add it says right in the "thick" pamplet on page 25, Other serious side effects of Actemra include tears (perforation) of the stomach and intestines, changes in blood test results (including low neutrophil count, low platelet count, Increase in certain liver function tests, and increase in blood cholesterol levels), hepatitis B infection becoming an active infection again, and nervous system problems. Sounds yummy.

2leftfeet 08/21/2015

I have been on Actemra, but gave myself the shots, I did not have infusions for this drug. I was only on it for 4 months, because my Rheum did not feel it was helping me as much as he wanted. For me, I did not have any issues with Liver numbers.

I was diagnosed a little over 3 years ago, when I was 59. Since I was older when I was diagnosed, I guess that I am willing to take a few more chances with these medicines, for a possible better quality of life. None of the biologics are risk free - but neither is aspirin or Advil.

MarleneJ 08/21/2015

My liver enzymes never went up on Actemra, although they did on many other drugs! But my cholesterol went up, First time ever, and it went down when I got off.

But yes to liver enzymes going up and down. My blood test last month they were 3 to 4 times above normal. I didn't change anything, and this month they are normal. I'm not complaining, but who know why?

I hope your rheumy figures this out for you. And don't worry until the enzymes get in the thousands. I've had mine up there, with no long term damage. They say 2000 is when you really have to start worrying. LOL

Angelpuss 08/22/2015

Hi Chuck,
I didn't have raised liver enzymes on Actemra or, for that matter, on methotrexate or any other biologic. However, it is a side effect of Actemra for some people.

stacey92 08/22/2015

I've been taking Actemra self-injections for about 8 months and recently had to stop them because my CBC was dropping pretty low. Haven't taken an injection in 3 weeks and I'm struggling. I get my blood work done again this upcoming week and I'm curious to see what my CBC is off the meds. I'm afraid my doctor is going to pull me off Actemra which is a shame because it's been working so well :/

depotblue 08/23/2015

oh stacey that's a bummer. keep us posted.

depot

chuckbaxter 08/26/2015

Thanks for the feedback, had a long talk with Rheumys nurse Monday, she said they are barely over limits. Also my feet and calves are swelling pretty bad, broke out the compression socks and Doc sent scrip for lasix. It's getting to be a pain in the ass. So tired of constant pain. I did find a really good compression sock on Amazon, if you're interested shoot me a message, thanks again for your inputs.

linzsey 08/26/2015

Sorry about your compression stockings and RA.

Join the Conversation