Log in
PMRGCAuk
8,062 members13,813 posts

Actemra

Has anyone used this drug? I had a temporal biopsy a week ago, started on 60 mg prednisone, still feel like my head is in a vice, a squeezing feeling, pain in back of neck, and now a pain in my right temple area. The rheumatologist wants to start Actemra, the preliminary research shows class action law suits and many side effects..... would really appreciate input---thanks

31 Replies
oldestnewest

Nap1 just posted about it in a positive way. Like you I only know what I’m picking up along the way.

1 like
Reply

pwalker, on the right hand side is a section called related posts which shows some past discussions about Actemra. If you read through those you may find some answers to your questions. As it’s only been available for GCA sufferers since May 22, 2017 for USA snd just recently for UK, there aren’t a lot of us with experience with the drug. Hope this helps.

1 like
Reply

thank you for the help navigating this site, I'm new to it so really appreciate your help. I found some information that I think will help me make the decision as to whether I go on this drug. Thanks again!

2 likes
Reply

Hi. I have been using actemra since October 2017 once a week injection while tapering down from 60 mg prednisone. I have PMR & GCA since August 2017. I have had only a GOOD experience. No problems or side effects so far. I am down to 8 mg pred . I am now tapering at a slower pace. I know my adrenal glands have to start working again. I found this forum in February. It has become my LIFE SAVER!!!! I hope my treatment plan continues to be successful. I was an athletic 59 year old. I want that active, go getter life back.... maybe slower then before BUT more active then now! Good luck and remember to do what is best for you!!! ... everyone has to live their own unique puzzle.

4 likes
Reply

Thank you for the response, it gives me hope. I just read about all the side effects and class action law suit and makes me very nervous. but also know need to get this GCA calmed down.. will continue to do more research, but your post definitely was encouraging. Thank you!

1 like
Reply

I'm so happy to hear you've had smooth sailing, Kentucky5! I do love a good success story! Keep up the good work!

Reply

Tho Actemra has only recently been used for GCA, it has been around for a while used for RA for

1 like
Reply

Go to the top right of the page where you will see a search box - type in Actemra and a list of all the previous posts will come up.

The class action is because the company omitted some figures for use in RA and as a result that created the impression that Actemra was less likely to cause certain cardiovascular problems than other equivalent monoclonal antibody drugs being used in RA. That makes it possible that some doctors chose it rather than another - whereas the truth is that it is NO DIFFERENT. Not better, not worse. But it was misleading.

I have to say - I do wonder why rheumies don't FIRST try the 3-day pulse therapy with high dose infusions of corticosteroids when the oral starting dose isn't enough to manage the symptoms. The Actemra doesn't replace the pred to get the intial symptoms under control, it is just a superior steroid-sparer. So to me the short, immediate and aggressive intervention that has been shown to have advantages should be the first approach - but then, I'm not a medic.

Reply

thank you PMRpro, appreciate your reply

Reply

I live in the US and have been on Acremra since Aug 2017. I was diagnosed with PMR and possible late onset RA three years ago. After several flares, even with the addition of methotrexate to the standard pred regimen, my dr prescribed Actemra to try and get things under control. I’m 71, have lost a lot of weight and experienced bone loss.

Started out on monthly Acemra IV infusions but symptoms really kicked up before next dose was due. He then switched me to injections every two weeks, with much better effect. I’m now off methotrexate and able to gradually reduce pred. Still have some minor PMR symptoms, but I’m really pleased with the Actemra. My dr documented my case with the pharm company and they have allowed me to purchase at a reasonable price. I’ve had no side effects whatever from the Actemra and am happy with my decision. Hope this helps!

2 likes
Reply

I've heard a few people say they were started on monthly infusions - which as I understand it are not recommended for GCA. I imagine the gap between is too long. So why are doctors using them?

1 like
Reply

In the US, Acrema has been approved for GSA. Actemra is dosed on body weight - 4 mg per kg. My body weight didn’t allow for a larger monthly dose per IV. I think folks whose body mass is greater can take a larger IV dose get good results with the monthly dose.

With the sc injections every two weeks, I’m able to take 162 mg per injection. I couldn’t take double that dose all at once in a monthly IV. Dividing the dose allows me to receive good clinical results without risking kidney damage. I’m at such a high fracture risk, and pred increases that, this is the best treatment plan for me. But plans definitely need to be individualized. I’m happy my doctors realize this!

Reply

I'm pretty sure the clinical trials in GCA were done with the injections because they had been shown to have a better effect.

Reply

I’m not sure about that. But the injections have to be done sc and not im. That can make a huge difference in treatment benefits. And I think some patients are not as careful about that when they self inject.

Reply

Hi Terry615,

I am also on 162mg injection every two weeks and it has helped me. I have not had any side effects ...yet.

1 like
Reply

Great! My doctor said, so far, no one he’s prescribed it for has had any problems. I know the pharm companies have to detail every reported problem...but honestly, if you read all the possible side effects of aspirin or tylenol, you’d never take even those meds.

Reply

Professor Das Gupta gave me monthly infusions for the first two months. One reason is that it takes time to set up funding and organise the delivery of injections to your home and if you are out of area you don't want to go all the way to Southend weekly - think that is possibly one reason. The Dose is different I think.

Reply

Hi pwalker801,

My wife has been on Actemra for almost three months. Working GREAT for tapering. She started at 20mg and now at 13mg. Just when you get to 20mg, start slowing down.

GO For It!

2 likes
Reply

If you are on Facebook there is a whole group just dedicated to Actemra. I have been trying to decide whether or not I wanted to start it, and after spending a lot of time on that site reading about other people's experience with it, I have decided to try it. Good luck with your decision!

2 likes
Reply

I have been taking Actemra (Tocilizumab) for 7 months, one injection per week. Usually you do not take it for GCA (which I presume is what you are diagnosed with), at the beginning but only later once you have tried a number of Predisilone sparing drugs - Metatrixate, Leflusomide etc. - without success. For me it has been a wonder drug and I am so very much better after 18 months of misery and high blood test results - ESR an CRP. Are you in the UK? NICE has only just approved it for GCA in special circumstances. As for the Class Action - not uncommon in America - the number of deaths and bad side effects are only a small amount when you consider the very many people with RA who have been taking it for years. Also - as GCA tends to be in older people there are bound to be people with other problems with other illnesses which might have contributed. I haven't had any side effects which is certainly not the case with Predisilone - have suffered leg weakness, sores in my mouth, osteoprenia, etc. and they are very difficult to get off. I recommend very slowly taking the Predisilone down when it is safe to do so. GCA can cause blindness and the Pred does prevent that. All the best

2 likes
Reply

I had bilateral temporal biopsies last week, so I've been on 60 mg pred for a week.. some of the symptoms remain....... when I called rheumotolgist this was his next course of action to put my on Actemra. I thought he would increase the prednisone dosage, as it is my understanding that is the only thing that takes away the inflammation. I live in the US and it is my understanding this drug is very expensive and I'm just not sure it is the right course of action at this time. I see my GP this afternoon so will be running all this by him, and have an appointment with a different rheumotologist for a 2nd opinion next Tuesday......... this morning I thought what the heck and increased the pred to 65 mg, I could also get into the chiro, and don't know if it is the increase or the chiro, or a combination but feel better this afternoon apart from being sleep deprived. Thank you for your reply, I say this in every post but it really is a God send..... You just feel so out there by yourself.......Thanks again, anything other advice I welcome.

1 like
Reply

I went to look up how tocilizumab works but got sidetracked by this. Specifically the list of side effects and warnings.

actemra.com/gca.html

Reply

Tocilizumab works by blocking production of a cytokine called interleukin-6.

Reply

I’ve been on Actemra since January (have both GCA and PMR). Weekly injections (you get used to jabbing yourself pretty quickly). Other than a little itching here and there have had no side effects. As Heron says It works in the liver to block production of interlukin 6 which causes inflammation. Most of the more common side effects are liver related so your liver enzymes and cholesterol are monitored. You have to use symptoms to monitor the disease because it does take your CRP practically to zero. Not so sed rate but that takes longer to rise with a flare.

Of course the other worry is infection as it lowers your immunity, but we have that same issue with Pred.

I’m down to 6mg Pred and feel good ( I’d forgotten what good feels like!). It is scary to read about the side effects but it helped me to see what people were experiencing by joining a support group though most include People with RA on it.

Let us know how things go. This is a great forum!

Reply

"The other worry is infection as it lowers your immunity, but we have that same issue with Pred."

I think the immune system effects are far greater with Actemra, I have had no problems with pred in nearly 9 years. Granted that has been at PMR doses but that reinforces my opinon that, while it can be justified for GCA cases who have had difficulty for whatever reason, I feel using it in PMR without considerable forethought is to be discouraged.

Reply

Dear PMR2011, I had just had made the decision to try Actemra, called my Medicare Part D Humana Drug Plan, it is a non covered drug and out of pocket would be $12,000.00. So that won't be happening, and makes me wonder what now? Its such a merry go round of emotions. I've been trying to stay pretty positive but this might bring on a melt down.

Reply

Enough pred - it does work and is all the majority of us have access to. The Actemra is just a very fancy and very expensive steroid sparer.

Reply

So sorry pwalker, that is discouraging for you. You are in the very early stages so it may seem insurmountable. However, as PMRPro says, you need a high enough dose to manage the inflammation and symptoms, then you can think about “managing” the prednisone. This forum is a wealth of information on just that. How to minimize side effects, be kind you yourself and your body and when it comes time wise tapering plans.

I had GCA for nearly a year before Actemra and PMR for 6 years before that and I did okay, you will too.

Reply

Genentech has a charity that will cover the copay for Actemra if you qualify based on low income; check their website.

Reply

Pwalker801

I have GCA/PMR since the summer of 2016 and also started with a 60mg dose of Prednisone. Last June, 2017, I had my first Actemra/Tocilizumab shot. I give myself a shot every two weeks and have not had any problems, side effects, or bad reactions. I was put on Actemra because I would get a major Flare every time I dropped below 24mg, I am now at 8mg with no problems.

I believe the Actemra helps me but remember Actemra is not a substitute for Prednisone, you still have to take it. I hope this helps.

Enan

Reply

Thank you for replying, I am gathering as much information as I can. It all gets rather confusing.

Reply

You may also like...