Anyone have experience with Actemra?

[Luciejc]

I have been reading about this drug and looking for input from anyone with GCA using it.

[PMRpro Ambassador]

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[Devoid]

Hi I have been on actemera since November, having not responding well to steroids and methotrexate. Great improvement on actemera , mobility much better and steroids down to 8mg per day . A long way from my normal self but loads better than I was prior to actemera. Please feel free to ask me about my experience if it helps

[enan-illuc]

Luciejc,

I have GCA and PMR and I have taken Actemra/Tocilizumab for over two years. I was put on Actemra because I had a tough time tapering my Prednisone. The Actemra works for me and I have not had any side effects that I know of.

[Grammy80]

I believe I started Actemra in November...because I had a history of diverticulitis and bleeding ulcers when it was considered earlier, the idea was rejected. The heavy doses of methylprednisolone did nothing to lower my inflammation markers for four months so we started with an injection once every other week. After two weeks I went from over 100 mg per day to 68. Toward the end of December I started giving myself injections every week and am now down to 12mg of pred per day. I have had no problems with it so far and am glad to be coming down on the prednisone. This week I will go to 8 mg per day and we shall see. Twice prior to the Actemra I had to go to the hospital for three days of 1000IV of Medrol. My markers are now within normal range. I'm still not the gal I was but feel so much better than I did. Today with the sun shining I got my walker and went out and walked, it seemed so beautiful. It has really helped me!!!🌸💗

[Spanky2019]

Been on actemra 2 weeks- just did 3rd auto injection today. Now on 20 mg prednisone. No side effects. Too soon to know. Have a long way to go to feel what will be my "new normal" but am better everyday. Difficult decision to be taking these toxic meds but hoping Actemra is a good decision.

[MrsChips]

I have GCA and Takayasu Arteritis , diagnosed last August 2019, after a stroke in March and a heart attack in Aug. I have been on Actemra since October, slowly tapering Pred to 12.5mg. I feel wonderful. My only pain is when I am showering /dressing or doing something strenuous with my arms. It’s always a good excuse to ask for help !! I’ve learnt to just do what I can and then rest for a minute or so. The Actemra has kept my CRP levels at zero, which is great news. It’ll be interesting to see how low I can go with the Pred, without any issues. Then we will know how successful the Actemra is at substituting the Pred. Maybe the doctors will be able to use it in the future as an immediate substitute, avoiding the need to take steroids at all.

[Jim-CJ]

Hi Luciejc,

My wife (GCA) has been on Actemra (weekly injections) for 1 1/2 years with no adverse reactions. It has allowed her to reduce Prednisone to 4 mgs.

It Works!

Good Luck,

Jim & CJ

[GratefulBailey]

I have been on Actemra since the end of October. I was very anxious starting the drug because of all the potential side effects, but had no choice because of severe side effects of prednisone. I had itchy palms and scalp, nausea and felt “off”/very tired the day after my first few injections, . I took Gravol and Benadryl to help with those side effects. I also was advised to have the injection after dinner - that way I could sleep off any nausea I was having. Fortunately, after those first few injections, I’m happy to say those side effects totally disappeared. Just recently, I have had redness at the injection site (after my last 2 injections); I was told this is a common reaction.

I am down to 8/7.5 mg of prednisone...struggling to go down further. Fortunately, my resolve to listen to my body and go slow with the taper is being supported by this forum, despite my rheumatologist’s instructions to be off prednisone by the beginning of March. We shall see what happens at this appointment!!

I am feeling so much better with Actemra, especially noticing an increase in my energy levels. My biggest challenge is navigating the unwell feeling and headaches when I taper, but I refer to the prednisone withdrawal symptoms to reassure myself.

I hope this helps.

[Trevgrrl]

Those of you who started Actemra, how long did it take to feel the improvement? I had my first monthly infusion a week and a half ago and haven't felt any improvement yet.

[PMRpro Ambassador in reply to Trevgrrl]

The infusion isn't normally used in GCA, they trialed the injections. But I think they mention somewhere that it can be 4 to 6 weeks with injections. It is also said it can be anything from 1 to 12 weeks before a biologic makes a difference and the improvement may take months to get to its peak.

[GratefulBailey]

It was slow and subtle, but I felt noticeably better by the third month.

[shazstep]

The good the bad and the ugly

First time I tried unsucessfull, I started again October last year. This time a lot of success. I go down 1mg pred every 4 weeks. have a lot more energy than I had had since journey began. I also had pred induced diabetes. I am no longer a diabetic. I am slowly losing weight as doing more. Blood pressure tablets have also been lowered.

Now for the side effects. My skin is so thin arms always covered in blood blisters. Skin so dry even on face.

Now for the not so good. Next week I am being tested for leukemia due to blood test results.

Whatever the side effects of Actemra I am glad it has helped lower preds. I think Actemra is still in trial stage as my rheumi has to send away papers for me to get it. We are all different and I believe in giving any meds a go.

Good luck whatever you decide.

[Luciejc in reply to shazstep]

Here in the US it has been approved for GCA recently. I understand it has been used for Rheumatoid Arthritis for a longer time.

[luv2read]

I've been on Actemra over a year and am down to 5 mgs of pred. Since my doctor is really on top of GCA, this was the goal that he wanted me to reach. I have an appointment in a couple of weeks, and was going to ask if I can taper down the Actemra to every other week. I haven't heard anybody else ask that question so I'm interested to know if that's even feasible. The only side effect that I've experienced is tiredness within 24 hours of my injection. Other than that, I truly believed it helped me taper my pred easier and successfully. Good Luck!

[PMRpro Ambassador in reply to luv2read]

What dose are you on? In the trials they had 2 groups I think - weekly and fortnightly (every second week)

[luv2read in reply to PMRpro]

One injection per week. There has been a couple of times that my doctor has let me skip a dose, due to travel and just the hassle of trying to keep it refrigerated during long travel days.

[PMRpro Ambassador in reply to luv2read]

That is the one thing that bothers me about the weekly injection! I wonder how they compare with the infusions - and whether they can be mixed, you know, use an infusion to save injections for a few weeks when you are on holiday.

[luv2read in reply to PMRpro]

I'm not sure if there is a difference, because it it based on your weight, whether it is injected or infused. Injections work well for me, I can do it in my home, rather than trudge my way to the doctors office and spend an hour there. It takes me one minute to do here. I'm sure you could mix as you say, but I find this much easier. With my doctor allowing me to miss a dose for a week makes me wonder if I could taper down to three injections per month, then possibly two. That's my number one question for him during my next appointment.

[PMRpro Ambassador in reply to luv2read]

I thought the injections were a standard pre-set volume - are they made specifically for the patient then?

[luv2read in reply to PMRpro]

Review Important Side Effect Information & training

Before you start taking ACTEMRA injections, your doctor or nurse should review the ACTEMRA Medication Guide, including Instructions for Use, with you. Reviewing the Medication Guide should help you to better understand the risks and benefits of your RA treatment. After reviewing the Important Side Effect Information for ACTEMRA, you should be properly trained on using the prefilled syringe.

Weighing in

Your ACTEMRA dose is based on your weight, so your healthcare provider or nurse should weigh you at each office visit to ensure the right amount is prescribed.

Above is what I found on the Actemra website. Which I think it may differ for what you are using it for. GCA is the 162 mg, same for RA. But with RA, if you weigh less than 100 kg the dose is every other week. That's what confused me. As you can see, it says it's based on weight, it's just not clear for what "ailment" you have been prescribed for.

SO, PMRPro, you are correct! Thanks for keeping us informed. I think I learn more from you and the others of this forum, than I do my doctors.

[Luciejc]

My understanding is also that they are preset but perhaps there are larger doses for those over a certain weight. I have just been approved and will soon order mail delivery for 3 months.