While not on Actemra myself, I came very close to participating in a clinical study with it last year and did some research on it.

This is what I was told how it would go. When I arrive at the office, they would then start to mix the med which takes 45 minutes. Great I thought - 45 minutes sitting there in the waiting room. Then the infusion itself takes 45 min to 1 hour. Then they have you stay put for another 15-20 minutes before you can go.

My biggest concern - and the reason I avoided doing this, is that I have a 2 hour drive each way to my Rheumatologist. I was afraid that if I would have some type of adverse reaction to the infusion, I would be stuck and wouldn't be able to get home.

I have since talked with someone who has been having the infusions for a while, and was told there are no side effects or adverse reactions at all. I was also told by both this person and the lead nurse at the Arthritis clinic that Actemra is a very good med and has helped a lot of people more than Humira and Enbrel.

Hopefully someone with actual experience will chime in with their thoughts.

I wanted to add - I hope some more folks chime in with their experiences. I have the feeling that since the Humira isn't doing much for me after being on it for 6 months now that my doc may want to try Actemra with me also.

angelpuss..wihsing you loads of luck ..hope it worls for you :)

i'll go for my third infusion next month. So far it's not done anything. There was another lady in the infusion room with me who has had 9 infusions with no results.....I'm not willing to wait that long before I move on to the next biologic. Hope it works for you.

Hi anglepuss,

I have been on Actemra now for 6 months and it has truly been life changing in the best way possible. I have a monthly infusion at my local hospital as I have to have a hydro cortisone pre- med due to an allergic reaction I had early in my treatment. I also have in fusion run over 2 hrs to ensure there is no reaction.

My inflammatory markers are now almost normal and I have minimal pain or fatigue. I do occasionally get tired by I am a company director and have 2 young children so I think that is normal. I am able to exercise regularly with walking and swimming in our pool.

Other than the early reaction I have had no other side effects. It truly has been a wonder drug for me and hope that it helps you just as much as it has helped me.

Previous to this I had tried Enbrel, orencia, MTX (still have 25 mg injection each week) , arava, and some other dmards that I can't recall the name of.

I should add that I started to notice a difference after 3 months and by 5 months I felt the best and continue to respond well.

@Angelpuss - my experience was that the infusion took less time than almost anyone else's in my room - no mixing time and 1 hr infusion time (down from the 2-3 hours I spent on Remicade infusions). Sat for maybe 10 minutes after the first infusion, then got up immediately once I'd established that I was unlikely to have a bad reaction to it. Worked for me for a long time, and was the best biologic I tried, though I did have to increase to the maximum allowable dosage (800 mgs, I think) to maintain the result.

Try typing "actemra" into the blog search box and you'll find a lot more information.

i'm reading all your responses. it is very helpful!. angelpus what were you taking before?

i have a long drive also and then a long drive to work and a long work day with respect to infusion.

but that's not why I am dragging my feet. it is because it's a third cellular change. orencia is a T cell blocker right? took that a year or two and the humira and enbrel anti TNF took those more years.. the actemra blocks that IL or IL 6 stuff, that's a third intercept to my cells. that's what worries me. stupid I know. it's as if I have a finite amount of black boxes I can read. i know this is not rational.

can't take remicaide, I am a pneumonia ite and remicade will not exit my body quick enough.

i guess all that is left is to block b cells rituxan or IL / 6 actermra

right now I have a wicked virus and they are testing for mono so I have not had the orencia injections for 3 weeks. such a treat to be both RA flared and virus sick. a two for one special.

back to actermra...I am also afraid of the cholesterol shoot up, how often are your cholesterol counts taken and have they remained the same? gone down? or gone up?

thanks for bearing with me.

the rheumatologist has suggested it might be time to bid goodbye to orencia and it looks like the insurance will work with this change.

Ros

Thank you all for your replies and good wishes. Your posts have helped me to feel calmer about going down the infusion track. This will be the third biologic for me. Enbrel gave me drug-induced Lupus (a rare reaction) and Orencia self-injections have not helped as much as my Rheumy hoped. I am also on 25mg MTX..
I hope everyone has a relaxing weekend and that "the beast" stays away from your door..

I just had my third Actemra infusion, and so far so good! I have far less swelling and pain, which I noticed after the second infusion. I've been able to reduce my prednisone from 20mg to 5 mg. My infusions take one hour, and I have had no infusion reactions. I have previously tried Enbrel, Humira, Orenica, and Remicade, and Actemra has helped the most. I also felt sick immediately after my doses of all the other biologics, but so far that is not the case with Actemra. My cholesterol has not shot up so far, but my rheumie is checking every eight weeks. Actemra comes in two doses, and I started with the higher one. My other meds are Plaquenil, Arava, and pain meds (no MTX). Good luck- if you go on Actemra, I hope it works as well for you as it is for me.
Caren

@Angelpuss

Know that you are in our thoughts and prayers with your decision. I trust you will do well and that you will keep us posted on how well you fair.

To you and all here, Have a grand week-end and that it be pain free
Peace
Bluedogs2

I'm on Actemra now. I had been on it previously & was doing well but then had to get off to have back surgery. So I have started up again with yesterday being my 2nd infusion. The one thing I can tell U is that it always gives me a headache for that day & usually part of the next & it dries my nose out. So if I drink lots of water & use nasal saline solution for my node it helps. I also take MTX shots with the Actemra. Good luck! Would love to hear yr feedback also..

Thanks, Karen. So pleased Actemra has worked for you after the other Biologics. I will be crossing my eyes, toes and fingers that it does the same for me.

Thank you Skyegirl for your suggestions. Good to know about headache, dryness etc.
Will definitely update you once I have started, which could be a few weeks away.
Hope you have a pain-free week.
Hugs

Bluedog, thank you as always. Will definitely keep everyone posted once this is all sorted and the infusions start.
Enjoy your week and no falling, thank you, young man.