Actemra: Has anyone taken Actemra infusions?  I do... - PMRGCAuk


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cassey1879 profile image

Has anyone taken Actemra infusions?  I do not do well with drugs and my Rhumy has suggested it as I don't want to try the Mehotrexate due to all the side effects.  She feels Actemra is worse on the body though.  I don't want either.  Started Dec. 0f 2014 on 60 mgs Prednisone for GCA after biopsy, had a flare for four months ago (April of 2015)  Finally got down to 14.5 mgs. this past January and another flare.  Up to 34 mgs now and still not under control.  As a result of Prednisone, now have Diabetes and Osteoporosis, just turned 69.  It is so depressing to keep going backwards, live alone which makes even harder.  Anyone else have the problem of trying to reduce.  Keep getting numbness in temple and tingling (where biopsy done, thought maybe from that, but now wondering if part of the flare, and eye pain.  Also have PMR.  Thank you for reading this and if you hae any answers would be greatluy appreciated.  Read Kate's book and gave a copy to my neuro opthemologist at Wills Eye Hospital in Philadelphia.  Born with a tiny kidney so basically one working, another reason don't want to add any more drugs to my body. 


19 Replies
Celtic profile image
CelticPMRGCAuk volunteer

Cassey, here in the UK Toxilizumab (Actemra) is at present only available for people with rheumatoid arthritis.  A large research study has been completed on its use in GCA but we are still awaiting publication of the results (due any time now, I believe). 

It isn't unusual to experience flares in the inflammation due to GCA  during the first 12-18 months of treatment but it appears that most flares are caused by either reducing Pred too soon following commencement of the starting dose or by too large amounts at any one time along the way.

I can so empathise with your concerns about taking drugs when you have just one fully functioning kidney.  I had a kidney removed in childhood and worry stiff about having to take medication.  My remaining kidney served me well for very many years.....until I took the NSAID, Ibuprofen, for several months, albeit in tiny doses, during my undiagnosed days with PMR/GCA following which I was diagnosed with chronic kidney disease.  Luckily, 5-6 years of steroid treatment didn't cause any further deterioration - in fact, some kidney diseases are treated with steroids.

I do hope someone may come along with personal experience of Toxilizumab - perhaps from the US - or maybe you can find answers on the rheumatoid arthritis forum from patients who might be taking it for RA.


cjatthesea profile image
cjatthesea in reply to Celtic

Cassey, I know nothing about Actemra. I did, however, try MTX for a few months. It didn't seem to help and started making me very sick.

I can certainly empathize with you. It looks we started this journey right at the same time. Dec 2014. I've gotten down to 15...very briefly. Back when we were getting our only information from doctors. After finding this site, we have a much greater understanding...yet, are still fumbling about. Two recent Flares have me back up to 60mg and wondering how I'll ever get back to my comfortable 20. The frustration is overwhelming I'm sure you know. I, too, have GCA and PMR. Would like to keep track of you. Perhaps we could be helpful to one another.

I am in the US and can be reached at odd hours. Sleep seems to be a thing of the past.

Going it alone must be terrible. Hubby and I can barely keep up with all the research and work involved. And then there's the pain.

My thoughts and prayers will be with you.

Get confused on this site and not sure how to send a personal message.  If you can send me your regular email somehow, I can email you, du

irectly, etc. Sounds like we have both been pretty much going through the same things.

HeronNS profile image
HeronNS in reply to cassey1879

Click on the person's name and you will go to a page where you can send the message.  

cassey1879 profile image
cassey1879 in reply to Celtic

Thank you so much for your input.  Don't know what I would do without this support group.  Wish it were not so far, (am in New Jersey) have a friend in Ireland who works out a drug factory, will check on it for me too.  Don't want to go on Methotrexate either!  Do not do well

PMRpro profile image

As Celtic says - I'm afraid you are unlikely to find people with experience of Actrema on the forums. It has been used in a trial but the results have not yet been published and I don't even really know whether people will know if they had it or not as it is a double blinded study - that means neither patient nor doctor knows who is on what, whether it is the real drug or a placebo alongside the pred.

I have been told unofficially that it is looking good and will probably be submitted to the FDA for approval this year - but at the present even in the USA it isn't covered by insurance, it is off-label use for GCA since it is only approved for RA, and that means either paying for it yourself ($17,000/year) or getting the manufacturers to fund it, which I think has happened for at least one person. I don't know if she has started her treatment though. 

cassey1879 profile image
cassey1879 in reply to PMRpro

Thanks for your info.  Dr office called back, and said be prepared to go on a plan in May when she gets back from Rome, as have to get off the prednisone.  I would like to try one more time and have dr. help me wean down, once get flare under control.  Dr., said it would be covered under my insurance.  Am hoping, it is not, because I don't want to take it.  Have been pretty much self medicating the last  months as original Dr. never gets back and always claims doesn't get my blood work.

PMRpro profile image
PMRproAmbassador in reply to cassey1879

I don't quite get this "you have to get off pred" mantra. It is all very well, but if the diagnosis is GCA then there is, as yet, no other option that works reliably. Tocilizumab MAY be the answer - but as far as anyone I know knows, so far it is not covered. Unless your rheumy lies and says you have RA. Which, sorry, is fraud.

Yes, pred can lead to reduction in bone density, which MAY lead to a broken hip which is never good news. However, if the choice is loss of vision I'd say it was a no-brainer. And there are medications to deal with poor bone density which are definitely covered by insurance.

Any chance of another rheumy? Who doesn't spend months in Rome?

Nap1 profile image
Nap1 in reply to PMRpro

I know a person  Who is being treated at Mass General with TCZ and her treatment started in May 2015. It was covered by insurance. She is presently on a very low dose of prednisone trying to wake up adrenals. I know as well that the hospital was given money for this treatment. It sounds like it's a combination of  her health insurance and some sort of help to the hospital. She is doing very well on the drug and  was able to reduce the prednisone without any flares whatsoever. Complains of nausea only. This all sounds wonderful I have mentioned before but now I know exactly where it is happening. I did receive  The websites you sent me and printed out the trials. I do not have the wherewithal to investigate this very fabulous hospital in Boston . I just know it is one of the best or the best hospital in the US. Can someone from this forum perhaps find out a little more information. Thank you for your wonderful forum and invaluable information. Kate your book has gone far and wide. Marilyn

PMRpro profile image
PMRproAmbassador in reply to Nap1

The situation in the US is totally different from the UK where the NHS has not yet approved tocilizumab for GCA and there is no other form of funding unless you are privately insured - few of us are.

This forum is based in the UK and has no paid staff as far as I know - we are all volunteers. If you ask on the forum, I think there is someone on there who did manage to find funding in the USA for Actemra from (I think) Genentech.

Joyismami profile image
Joyismami in reply to PMRpro

My Mom is taking these infusions for GCA. She had her first one a couple weeks ago and is schedule for an infusion every four weeks in hopes that will help her be able to reduce her 60 mg a day prednisone.

Nap1 profile image
Nap1 in reply to Joyismami

Hi. Happy for your mom. I am curious if she is on Medicare. I didn't think infusions were being given unless your insurance company paid. This drug runs over $1,000 month which is pretty steep for your average senior.

Hi Casey,  I also was diagnosed with GCA back in 2014 and wasn't able to lower my Pred without higher inflammation, headaches and vision problems (I have already lost partial vision in one eye, so I don't mess with that).  MTX didn't do anything for me so my Rheumy suggested Actemra and I have been using (self injection, not infusion) for about 7 to 8 months.  It has brought all my inflammation markers down to low normal and I have been able to lower my Pred from 25 MG to 8/9 MG.  I too am very Pred sensitive and had just about every bad side effect possible, so I had to do something to lower it.  I am in the US and the Dr, did have to get this approved because I don't have RA.  No major side affects, but this is a new drug so only time will tell.  BTW, I too also have only one kidney and have blood tests every month to make sure the function is not being affected.  Good luck!

Nap1 profile image
Nap1 in reply to Reani

It's good to hear Reani. Check my reply to the pro. Have someone else in the Boston area being treated successfully with TCZ. No flares and down to, I think, 5 mg. She is just trying to get her adrenals  to wake up. She was getting infusions of 600 mg once a month and I understand it went according to her weight.  If you know how many milligrams are in your shot and how often you take the shot I would love to know. I am in Florida and can't seem to put together a way to get onto TCZ.  I started on 40 mg for GCA in July 2015 I am just about at 25. Lots of medicine  and too long. Have had many many side effects and so far one relapse. The prednisones is destroying my body and my brain. Would  like very much to hear your story. I would not mind getting an email at  Some of us are leery of posting everything. this is a wonderful but very open  to the public website. I do not think this would be against any rules. Thank you Marilyn 

PMRpro profile image
PMRproAmbassador in reply to Reani

"but this is a new drug" - not as new as you think I suspect. It is new for use in GCA but the first clinical trials for RA were in 2000 so it has been in use for 15 years already.

cassey1879 profile image
cassey1879 in reply to Reani

Just wondering how you are doing. Not sure what I am going to do yet, Methotrexate, or Actemra or just rry and taper one more time.  Back up to 40, decided to take 20 in am and 20 pm as felt my stomach was bad and chest pain, but think it is gastro related from the prednisone.  Take 300 mgs. of Zantac.  This is such a cray disease.  Thank God for this site and people who don't think you are crazy, LOL Hope you are doing well,

I did have five infusions of Actemra , here in the US.  It lowered my prednisone  from 15 milligrams to 10.  I have been told that the unofficial results on the trails of the drug have been good.  I was not on a trial so no debate on whether I was actually on the drug.  I had an adverse reaction after the fifth infusion ( a burning sensation through out my entire body......I can only describe it as feeling like I had ingested a chlorine bleach by accident).  I made the decision that it was not worth taking that potent a drug just to lower the prednisone. If it cured the disease.......maybe... but not as a lowering mechanism. 

When I asked my rheumy about Actemra she told me it was not approved for use here in Canada.  In the States it is approved for arthritis but there are trials for PMR and GCA.  There are several Facebook groups (PMR, GCA, Prednisone support,....) where people have posted their experience with the drug.  Perhaps you could check there and find information as to if people find it helped them, side effects, etc.  My rheumy said she would look into the possibility of a trial near me. Best of luck!

There are many people in the US where I am from that are taking Actemera in Pa. At Mass General in Boston in Chicargo. I found this on a website called prednisone. The gal in Boston is down to 3 mg of pred. And still taking actemera. Her only complaint is being neasous.   Hope this helps. I am looking into this as well but the cost is rediculous and I too wonder about the side effects. Have been on pred for  3 years for pmr and now again for GCA.  Had relapse at high dose and went back to 40. Started July 2015 and at 22.5 now. Hope to get to 20 next week. Then 10% thereafter until 10. Can't think that far in advance. This website taught me everything I need to know and then some. Wish you good luck. Stay in touch. I'm originally from the Jersey shore.  Marilyn

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