Actemra: Has anyone used this drug? I had a... - PMRGCAuk

PMRGCAuk

14,511 members26,499 posts

Actemra

pwalker801 profile image

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

53 Replies

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

I'm on Actemra and have been for 3 years! Wonderful drug! The ONLY one that actually really helps me with very FEW side effects (if any) and I've tried them ALL. I do get "occasional" headaches BUT I believe the headaches are directly associated with my BAD Sinus' and Allergies. Then again, Actemra can cause increased runny nose and or sinus irritation (says in pamphlet regarding reported side effects). Most of the people taking this drug report 0 side effects! I take this SubQ every other week. I have friends who take this every week too and report 0 issues or side effects. I believe you can also get this intravenously also as some report they prefer taking it that way (once a month).

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.

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!

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.

pwalker801 profile image
pwalker801 in reply to Kentucky5

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!

in reply to Kentucky5

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

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

PMRpro profile image
PMRproAmbassador

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.

pwalker801 profile image
pwalker801 in reply to PMRpro

thank you PMRpro, appreciate your 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!

PMRpro profile image
PMRproAmbassador in reply to Terry615

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?

Terry615 profile image
Terry615 in reply to PMRpro

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!

PMRpro profile image
PMRproAmbassador in reply to Terry615

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

Terry615 profile image
Terry615 in reply to PMRpro

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.

enan-illuc profile image
enan-illuc in reply to Terry615

Hi Terry615,

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

Terry615 profile image
Terry615 in reply to enan-illuc

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.

patrickd profile image
patrickd in reply to enan-illuc

How long have you taken Actemra? I've been on it for over 3 years and it's the only drug that has improved my condition without making me incredibly ill from side effects. I still get flareups maybe every 3 or 4 months and they bump up my steroids temporarily which knocks out my inflammation. Long term high dose of steroids isn't recommended here I guess.

PMRpro profile image
PMRproAmbassador in reply to patrickd

This forum deals with PMR (polymyalgia rheumatica) and GCA (giant cell arteritis) and the mainstay of management is corticosteroids. The use of Actemra/tocilizumab is relatively new and it and other IL-6 inhibitors are the only option besides pred. It isn't approved at all for PMR and in some countries only third line for GCA after pred and DMARDs have failed to stop relapses and even then only for 1 year. It is used more in the USA for GCA.

PMR and GCA differ considerably from RA - don't affect joints, are forms of vasculitis (inflamed bood vessels) and both usually go into remission after a few years although there are more difficult cases. So what applies for RA often has nothing to offer us.

patrickd profile image
patrickd in reply to PMRpro

Thank you for the information. I am new. So because I do not have the same exact condition I am not allowed to ask or reply or even participate in the discussion?

PMRpro profile image
PMRproAmbassador in reply to patrickd

No - not at all. I was just pointing out that what applies with RA rarely does for us - and it starts with whether you can even try a medication. We do have people with RA who join the forum and then tell members that pred is evil and they shouldn't take it. That's like telling a Type 1 diabetic they shouldn't be on insulin since GCA that isn't properly treated can lead to total and irreversible loss of vision, untreated PMR is more likely to progress to GCA.

There are a few people who think RA and PMR may be intertwined - but it is more often a case of RA being misdiagnosed as PMR since RA can have a polymyalgic presentation and there are no distinguishing features that show a difference. Very occasionally erosion markers appear in joints much later - and a small proportion of patients with a PMR diagnosis do very well on methotrexate, even sometimes getting off pred altogether. But for most people mtx does nothing at all for the pain - the same as most painkillers don't help PMR pain at all.

This thread is over 3 years old - I'm not sure if the members you are replying to are still on the forum.

patrickd profile image
patrickd in reply to PMRpro

Rheumatoid arthritis and polymyalgia rheumatica are the two most common systemic rheumatic diseases in adults. Polymyalgia rheumatica (PMR) occurs exclusively in people over the age of 50 years, in contrast to rheumatoid arthritis (RA) with typical onset between 30 and 50 years of age. Polymyalgia rheumatica and seronegative rheumatoid arthritis may be the same entity.

enan-illuc profile image
enan-illuc in reply to patrickd

Hi Patrickd,I have been on Actemra for about four years. I have not had any side effects yet. I also increase my Prednisone when needed. I am on about two mg and I do think it helps. According to my Doctors 2mg is not a problem.

patrickd profile image
patrickd in reply to enan-illuc

Yes me also! We keep the steroids down as much as possible and then increase when I flare for a week with a taper down. They work great but I wish I could be off steroids. No choice in the matter because they are a miracle for me. Actemra is the only drug that works for me too. Finally someone with something in common! So nice to meet you!

enan-illuc profile image
enan-illuc in reply to patrickd

Same here! PMR/GCA seems to be a 'lonely' disease, not many have it. This forum is great for support.

christine2715 profile image
christine2715 in reply to PMRpro

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.

PMRpro profile image
PMRproAmbassador in reply to christine2715

How long will you get the TCZ for? Did you find any difference between the infusions and the jabs?

christine2715 profile image
christine2715 in reply to PMRpro

As far as I know, as long as I need it but there is no real clarity. At the moment I have had a flare and been allowed to take it 3 weekly. For me 4 weekly is too long I think.

PMRpro profile image
PMRproAmbassador in reply to christine2715

Everyone else has a year - but anyone who was due to finish during Covid has had it extended. But not indefinitely.

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!

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!

patrickd profile image
patrickd in reply to Mikb

Do you have a link for that site on FB?

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

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.

HeronNS profile image
HeronNS in reply to pwalker801

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

HeronNS profile image
HeronNS in reply to pwalker801

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

PMR2011 profile image
PMR2011 in reply to HeronNS

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!

PMRpro profile image
PMRproAmbassador in reply to PMR2011

"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.

pwalker801 profile image
pwalker801 in reply to PMR2011

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.

PMRpro profile image
PMRproAmbassador in reply to pwalker801

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.

PMR2011 profile image
PMR2011 in reply to pwalker801

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.

gifford7 profile image
gifford7 in reply to pwalker801

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

GREAT points! One doctor told me that everything for a drug gets reported...high cholesterol, high blood pressure etc. I guess even if you happen to have the flu after you take the medication they count those flu side effects. geez

PMRpro profile image
PMRproAmbassador in reply to patrickd

No - the various reported effects in clinical trials are looked at very closely to assess whether they are directly linked to the substance being trialed or whether they are related to something else.

GREAT advice! I also had BAD side effects from Pred. For some reason on this site someone puts you down if you mention the "side effects" from it. SORRY but it's a fact! Ask any physician. Here in the USA doctors on so on top of the possible yet unavoidable long-term ramifications of steroids. I do get side effects from Actemra but nothing compared to steroids. I get some headaches, sinus inflammation, also my cholesterol is a bit high but controlled. Also, Actemra is being used here in the US to treat severe Covid patients and with VERY successful results!

PMRpro profile image
PMRproAmbassador in reply to patrickd

It is being used all over the world for Covid,

piglette profile image
piglette in reply to patrickd

I am very surprised that you say “For some reason on this site someone puts you down if you mention the "side effects" from steroids. SORRY but it's a fact!” In the six years I have been on this site I have NEVER found this. I am sorry and surprised if you got this impression. I would be interested to have an example.

PMRpro profile image
PMRproAmbassador in reply to piglette

I assumed he meant Actemra - and all that happens is that the forum is realistic. Just because one person thinks it is wonderful doesn't mean everyone does and there are about half a dozen people on the forum who have either had to discontinue it or find living with it not easy. There are also a few who think it is the best thing since sliced bread. You win some, you lose some - and that applies to pred too.

piglette profile image
piglette in reply to PMRpro

I thought Actemra initially but I then re-read the post which says “I also had BAD side effects from Pred.” …….. I am not sure that people on this site poo poo side effects of any drugs though.

PMRpro profile image
PMRproAmbassador in reply to piglette

Me neither - and when it comes to pred, what we do say is that there are ways of dealing with many of them, that some of them can be caused by PMR itself and the evidence is that in the case of PMR doses, it isn't any worse than aging itself ...

piglette profile image
piglette in reply to PMRpro

I am not aware of people putting other people “down” though who mention any drug side effects.

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

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

You may also like...