So I had my first Actemra infusion today | Arthritis Information

So far so good. I still don't know if my co-pays will be affordable - that is the big mystery until the hospital bill comes. Also won't know if it works for awhile. The nurse said side effects could include headache, nausea and high blood pressure. She took my BP and temp after the infusion and I was fine. No headaches, no nausea. It lasted one hour and they made me sit for 15 minutes for observation.

I do feel a burst of energy which start about 45 minutes into the infusion. I went to the store to pick up some groceries, pumped gas, then came home and did a Pilates workout - after working all day. Good for you! Keep us posted:)Aw crap. I woke up last night with pain and inflammation in left knee, left index finger, right wrist and hands generally stiff and sore. I wasn't expecting a miracle right away but this is a setback, knee hadn't felt that bad since my last hospitalization.

However it seems to be calming down. I took 10 mg. Prednisone this morning with my Voltarin. I think I forgot my meds last night. Hi Tara, sounds like good news about getting the Actemra. Not sure if you've seen my other posts, but briefly I am probably getting Actemra in this trial (don't know for sure). There is a 75% chance I am on it, and also have seen very good improvement in my RA symptoms. I've had 2 infusions, the 2nd one about 2.5 weeks ago. I can walk normally again, and everything is going better. I may also be getting real MTX (rather than placebo) but from what I read it usually doesn't cause improvement after some months -- please correct me if this is an incorrect impression. So since I've seen improvement within just a few weeks after 2 infusions, I figure it is really Actemra and it is working.

I am curious, how did you and your RD decide to try Actemra? Was it your request? Or did the RD select it after trying other things? What was the decision process leading up to it?

I am curious, since some day this trial will end (probably after another 2 years?) I'll go back under the care of my RD, and just wondering what will happen.
Hi Roland, yes I have been following your posts because I was very interested in Actemra. I am so glad you are experiencing relief. I started on Methotrexate many years ago, before the biologics were invented. When I first started it gave me a lot of relief but I was still getting joint damage, just at a slower rate.

My doctor began discussing infusions when it became apparent that my Enbrel was no longer working. My body figured out it was being tricked and I started having break through flares. I had seven wonderful years on Enbrel but I guess these drugs can't fool the body forever. He was going to put me on Rituxan at first, but around that time Actemra was approved by the FDA and he became interested in that. We began the long struggle with my health insurance and while that was going on I began having bizarre flares that were so severe I had to be hospitalized. On my last hospitalization, last month, he was going to have me infused right there but I refused without insurance approval first. So that's how we got to Actemra.

I am the first person in this county to receive it and was a bit of a celebrity at the clinic. I hope you just over did it with shopping and pilates and that the days ahead will bring you much needed relief!
Thanks Babs. Unfortunately it's not an overdo kind of thing, just Arthur being an old dickhead. I jacked my Prednisone back up to 17.5 mgs a day so I can work tomorrow. Just a little update ...

That flare I was experiencing has been slowly tapering off, and my Prednisone is now down to 7.5 mg. as of yesterday! My knees feel fine, hands much better, just having some swelling in the metatarsal/forefoot areas. I'm afraid to say anything positive because Arthur might hear me and run to my "rescue," but I'm having a lot less inflammation and feel a little more energetic.

I'm almost ten days post-infusion. I'm not going any lower on Pred until I see rheumatologist. Fingers are crossed - literally!
Green~Tara2010-10-23 10:25:33Well I felt fabulous on Sunday, but damp weather moved in and Monday I awoke with very swollen fingers and feet. I cannot wear my wedding ring! Back up to 10 mg. Prednisone per day. However my energy levels remain good and my knees and elbows are much better.

I am noticing my weight creeping up ... and I'm following Weight Watchers, keeping a detailed food journal and staying on my points. I have started exercising more, exercise or Actemra causing scale to go up? Note to self: remind RD he has to write a lab script for cholesterol check.

Updating thread. I had my second infusion on Nov. 11. No euphoric feelings or bursts of energy this time.

I'm very confused and not sure if I'm getting any results yet. I have good days then I go right back to having bad days. It seems like one doozy of a flare every week, then it clears up and I go to having a bad foot one day, a bad hand the next, a bad elbow another ... it feels like my body is a Whitman's Sampler box and my RA is sampling a different "candy" every day! Yesterday I had to call out with a bad flare in hands/feet and the severe fatigue and flu like feeling. Never even got out of my PJs.

HOWEVER - these flares were landing me in the hospital prior to Actemra so maybe something is working? I'm just so anxious for it to start working more. I want the remission that Enbrel gave me and I want to get off this accursed Prednisone.

I also have not yet received the bill for my co-pay and so am anxious about that, too. I enjoy your descriptions.. though I am sad that you are having troubles..

Sometimes.. during these, my enbrel days.. I have days like that.. I have some issues with this joint or that.. sometimes it is because i did too much.. or sometimes it is because I did too little .... who knows??

Hang in there.. I'm pulling for y ou!!!

Oh gee thanks for the reminder to update.   Hi Tara,

So sorry to hear of the continued pain and inflammation. I don't know the particulars about Actemra; I wonder why it might work more quickly for some people. I suppose there could be some variables involved like the size of the dose, individual biochemical differences, perhaps the stage of the RA could be a factor. Remember that I was newly diagnosed last July and had never been treated with any DMARDs. Maybe that was a factor. I am also taking Celebrex and coumadin, maybe those are factors that create different results.

The pain in your case sounds pretty bad; I know it doesn't help much, but last summer I felt like I lost 4 months of my life due to the RA.   But try to hang in there, maybe get in touch with some of your friends. Are you on facebook? I joined about a year ago, and sometimes it was really marvelous, lots of people from the high school and college days surfaced, I was quite skeptical about this "facebook stuff", but turned out sometimes it was really pretty cool. (I don't write about RA there, and rarely talk to friends about it since I consider it kinda confidential, and have this forum to lean on for support.)

I leave in about 1/2 an hour for the 4th infusion today, and it is going well, so maybe it will just take a little more time in your case. Don't want to elaborate too much, sure the physical condition is much better, a huge deal. On the other hand economically things are going very bad for us (yeah another source of "depression"), but I still had some joy going out and getting family some smaller presents -- just that kind of person, where I like trying to think real hard what each person might enjoy. In any case my thoughts are with you, I wish you could come over for a cup of coffee! And I do wish you a good time this holiday season.

Roland
Hi Tara, I recalled one more point that we can't forget. I don't know for certain if I am on the Actemra or not, I just think there is a high probability that I am. It is a blind study, so I can't know. None of the trial coordinators know. The reasons I think that I am on Actemra include:

- 75% of the participants will get Actemra
- I have heard, or read in the past from other people (can't recall the sources) that Actemra can start to help after a couple of infusions (1-2 months). I also think I read that typically MTX doesn't help until after 3-4 months. My situation started to improve in the 1-2 month timeframe.
- I haven't noticed any side effects from taking the MTX. I have read that some people have side effects, but not all, so this may not mean much.

For all I know, I am in the 25% group getting MTX only. Based on the above it seems less likely, but again I am not sure if I am getting Actemra. This study is all about researching the combination of Actemra and MTX. 50% of the participants get both, so for all I know it is the combination that is producing what I think are remarkable results. Maybe that will turn out to be the key, rather than Actemra alone.

I do wish you well!    Thanks so much for the support, Roland and Snow. Roland, you may be onto something that I've been on other DMARDs in the past. My doc said he's upping the dose next infusion (Jan. 6). Right now I'm on the minimum dose, apparently you start at bare minimum and if no side effects they work you up. I'm sorry you are having financial problems and hope that will work out for you.

Snow, yes this is a bad time of year for me between the cold, the holidays and the dark. Today is the Solstice so I'll be counting down the minutes of extra light and counting the days until I can walk outdoors again. I still do yoga when not in too much pain. Lately I'm in too much pain for even my QiGong which had been working miracles. But perhaps I should do the meditation CD that came with my QiGong collection and at least try to calm and balance myself internally. Being aware the depression is there, and the causes of it, is half the battle. I think what would REALLY lift my mood is being able to clean my house but my arms and hands hurt too much for anything other than cooking and washing the dishes. DH does his best to help, but he's got a full-time laborious job and is tired as well. I certainly won't criticize the man for not moving furniture and vacuuming the legions of dust kitties (er ... tumbleweeds?) behind the furniture, and wash baseboards, etc., etc. that I need to do and just can't.

Today is another bad day - didn't sleep all night. Think I'm going to call Dr. L for a depomedrol shot. Hi

I had 5 infusions -two at the increased dose.I am told my blood levels are good--My question is-if my levels are so good-why do I feel so bad?

I am taking predisone again due to the pain in my shoulders and hands.What is crazy is that my right knee has no fluid or pain.That has been a concern for the last two years.So The Actemra has helped that but now I am having pain and swelling elsewhere.

I increased my Pravastatin to due an increase in my cholorestoral levels.I have increased my methotrexate to 10 mgs weekly.

I am very frustrated and scared.I have tried all other biologics and they have either stopped working after a few months or gave me an allergic reaction.

How are you feeling?

Sue

Sue, I wish I had answers. I'm sorry to hear this drug has increased your cholesterol levels. I ended up calling my RD Tues. and he was able to squeeze me in for a depomedrol inject in the butt, sent me home with directions to start a Prednisone taper at 40 mg.

So I'm taking time off from work to sit in an infusion center and get infused with outrageously expensive meds that don't work? He said he's doubling the dose. That will be Jan. 6. I will report back. Right now I'm flying high on Prednisone but we all know that is a false relief.

Sue - my RD says my blood work looks good too. So sorry to hear that you still aren't getting the results you had hoped for. This is all such a crap shoot. The more I read and learn about RA, the more confused I become. At the moment at least, I'm convinced the doctors are as bewildered as we are. All the meds affect each RA patient so differently, some work, some don't. I swear the RD's must have a roulette wheel in their private office with drug names on it instead of the usual numbers.

I'm so hoping that you will start to get some relief soon. It is such a frustrating disease.

Hello,
I have been reading your posts with great interest as I have had my 4th infusion of Actemra and will be having my 5th next Monday the 10th January.
My blood tests show that the Actemra has dramatically reduced the inflammation levels and I have had less fatigue and generally been more active than I have been for years.
I am fortunate to have been able to reduce the amount of meds taken, ie., now down to 2mg on prednisolone and no methotrexate!!
I have enjoyed reading all the comments and will follow your progress. Wishing you well.
Regards
M
That's awesome news M, thank you for sharing! My fourth will be this coming Thursday, maybe it will be the charm.

I do have to admit, some joints seem better ...

Update: Had infusion four yesterday. The dose was doubled. As usual the infusion itself was fast and easy. But when I got home, I felt very lightheaded. Middle of the night woke with a headache so bad I almost cried. I had to call out sick today. Slept until after 10:00 a.m. which is weird for me. Feels like I was in a car accident and hit the windshield with my head.

But my joints seem to finally be responding! I researched and the headache seems common if they double your dose. We'll see what happens.
hi Tara,

Sorry to hear about the headache. I wasn't aware that this could be a side effect, seems pretty scary. So glad to hear the joints are responding!

Roland
Reading with interest the posts about Actemra. I had one infusion.. felt great energy then had one of biggest flares I have had in a while. Normal prednisone has been at 3-5... up to 15... now I have tapered to 10. Had second infusion and a bigger dose. Have one joint giving me problems and still on 10 mg pred. blood work shows my cholesterol level up.. Hgl.. Ldl.. and my liver enzymes elevated. Sheesh.. I have never even had a cholesterol problem before. Good ratios.. So I see my rheumy day before my next infusion. I will not go on cholesterol meds.. Should be interesting. I was on Orencia for several years with pretty good results but it seemed to not be working as well so on Actemra at rheumys request. I quit methotrexate at least a year ago. Couldn't stand the feeling of walking through mud. My wrist has really been in big pain... so I keep the prednisone dose up. Yes, it is like Russian Roulette with the joints.. thankfully the last week it has just been the wrist. Who knows. I don't think anyone really does. I have not taken fish oil for quite a while and want to get back to that. I do a multi vitamin, vit d, actemra and the prednisone. ohhh .. sorry if this is tmi but i have heaps of gas lately.. lol... floating bowel movements... I know I really overdid it at Christmas with food.. but this is sure lingering.
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