“The system is broken, and all the financial ince... - PMRGCAuk


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“The system is broken, and all the financial incentives are lined up to keep it broken.”

Ruadh profile image

Actemra - most disturbing. Being considered for GCA medication.


For all the questions about Actemra, its market and Genentech’s profit potential keep growing.

In May, the FDA approved Actemra to treat giant cell arteritis, an inflammation of the blood vessels that, like rheumatoid arthritis, is an autoimmune disease. It based the decision on a one-year study by Genentech that involved just 149 patients who took the drug. In a press release, the FDA said the trial’s “overall safety profile … was generally consistent with the known safety profile of Actemra.”

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Hmmmmm. One shakes one's head - slight of hand get out if ever there was one !

4 Replies

I think the problem was that Roche did not report the bad side effects of Actemra while other companies with rheumatoid arthritis drugs such as Humira, Remicade, and Enbrel warn of the risk of congestive heart failure. The Actemra label does not. Nor does Actemra warn of the risks of heart attacks, strokes, interstitial lung disease or pancreatitis. These conditions can cause serious injury and even death.

jinasc profile image
jinasc in reply to piglette


I always have worried about Actemra and the trials carried out on GCA as they were small.

I do know one person who took part in that trial and had no problems but she was considerably younger than the normal age range.

It was only trialled for use in GCA and not PMR. As they are closely linked, I do wonder sometimes wonder why.

I cannot find out if it is licensed for use in other illnesses in the Vasculitis family. GCA is the largest member in that family and I do not understand the relationship between RA and GCA, but them I am not medically trained at all.

I had read up on the suspected problems on the use for RA, it was only 8 years old at the time of the GCA trials, which is comparatively new and I am still very cautious.

I only can hope that people who are offered this drug read up on it and then make a very personal decision.

It is only licensed for limited use in the UK. The USA system is different and when it was licensed by the FDA is was only a partial license.

All drugs have side effects however the older the drug, more is known about the action and effects and most can then be dealt with.

I must state this post and its content is a very personal opinion from an ordinary person who had GCA for 5 years and is coming up to 12th in remission. I also agonised as to whether I should post this at all.

Hellyowl profile image
Hellyowl in reply to jinasc

Thank you, Any opinions are valid and alert us to potential problems, it is then up to individuals to take research further if they want. But sharing is most important. Have a happy Christmas

Actemra is very effective for me. GCA/PMR and could not get below 30mg after a year and a half. Now down to 3 mg Prednisone and Actemra. I feel blessed it was approved for GCA. It is all based on your perspective. I read there were 5 studies.

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