Actemra: My doctor has been trying to get me on... - PMRGCAuk


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Manchild profile image

My doctor has been trying to get me on Actemra for months. I finally agreed to try it IF I could get a blood test for possible IL-6 involvement. I am sitting in the lab at this moment waiting for the blood draw. I may have to pay for the test myself if Medicare doesn’t cover it, which is very possible. I don’t care, I need the results before going on another drug.

I shall keep you all informed....

17 Replies
PMRpro profile image

I think I had one done some 11 years ago but was never told the result. Just had his denial it was PMR - wanted it to be anything but!

Actemra is not used for PMR in the UK, it is not licensed - only for GCA.

You are correct to be on your guard, it has only come into use for GCA about 18 months ago. It had been used for about 10 years for Arthritis.

Manchild profile image
Manchild in reply to jinasc

Yes, I know the history of Actemra use. It is used off-label in the US for PMR. My point is that as it effects IL-6, I want to know if that is my problem before trying it. It seems to me that if my IL-6 levels are “normal”, taking Actemra would not be indicated.

jinasc profile image
jinasc in reply to Manchild

Oh, I am so pleased to know that someone actually looks at the history of their drugs.

in reply to Manchild

I'm not sure, but if you are currently taking prednisone that will decrease or at least have an effect on IL-6 levels. I think the mechanism is different from Actemra. I believe the test might have been beneficial before prednisone.

IL-6 blood levels go very high on Actemra which means it is working. This part, I know for sure but I'm not sure about the first part.

For what it is worth, my CRP and ESR were always elevated even on prednisone. On Actemra both CRP and ESR are practically zero. I take all inflammation markers with a grain of salt. I pity the people who have normal CRP and ESR. If you only rely on the labs those people wouldn't even get prednisone.

PMRpro profile image
PMRproAmbassador in reply to

I think you are right - but it is very complex!

shows how broad the effect of pred is!

in reply to PMRpro

Wow, it is very complex, I didn't even know about all those cytokines and the complex nature of it all. Makes me wonder which cytokines and mechanism of action are friend or foe. Like you have always said --- prednisone is like using a kalashnikov to treat PMR. Oops, maybe you said that about Actemra.

PMRpro profile image
PMRproAmbassador in reply to

Many of the cytokines are both - they have a friendly role to play but when things go wrong then they can cause problems. Like the story about reactive oxygen species - they have physiological AND pathophysiological roles so you don't always want to get rid of them by stuffing your diet full of antioxidants ...

Manchild profile image
Manchild in reply to

I agree, I probably should have had test before starting steroids, but at that time, I could only think of alleviating my pain, and had not done any research.

in reply to Manchild

Being in pain is never a good time to make decisions. I once had leg pain so severe that I would have signed any consent form --- even one for amputation.

mpl615 profile image
mpl615 in reply to Manchild

What is IL-6?

PMRpro profile image
PMRproAmbassador in reply to mpl615

The inflammatory substance that is the cause of most of the inflammation in PMR and GCA and which responds to Actemra. There are 2 other known mechanisms in GCA which don't respond to Actemra - and why some people still need pred.

And why not.

Tocilizumab blocks the IL-6 producing inflammation.

“Besides other functions, interleukin 6 (IL-6) is involved in the development of immunological and inflammatory reactions. Some autoimmune diseases like RA are associated with abnormally high IL-6 levels. Tocilizumab binds soluble as well as membrane bound interleukin-6 receptors, hindering IL-6 from exerting its pro-inflammatory effects”

Hope you get the answer you need.

Manchild profile image
Manchild in reply to Chrisellie

Yes, from a Japanese study in 2011 concerning RA, “In respect to the efficacy of Tocilizumab, it is reported that the results differ depending on whether disease activity is evaluated that use inflammatory markers....”. I would assume that this would apply to Tobilizumab for PMR also.

Chrisellie profile image
Chrisellie in reply to Manchild

My ESR and CRP were high with me and my PMR,GCA and LVV symptoms have now all gone (as far as I know). I had been on Tocilizumab weekly injections for a year and have been off them now for 6 months ( Prednisolone prior and during early injections).I get 6 monthly blood checks and a 6 monthly consultation for at least 12 months. Very happy and worked for me. (So far)😀

Hi i have been on Actemra for 13 months i could not tolerate Methotrexate ect was so ill on them.I had a bit of a bumpy road with side affects when i first started Actemra but i am much better now,feel tired afterwards and bit nauseous sometimes,i am down to 3mg prednisone and pain has olso improved.I live in Scotland near Glasgow.I hope you get sorted soon.xx

I started on Actemra infusions 3 months ago for my PMR. Three and a half weeks later my lab work showed no inflammation--for the first time in 17 months! I have had no major problems with receiving the infusion.

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