Tocoilizumab, has anyone tried it yet?

[LarryLeek]

I read about the new breakthrough drug they have for GCA & PMR. It says that 56% of the patients that tried it were able to stop taking prednisone within 1- year after their illiness went into remission. It also says the side effects aren’t as bad as the prednisone. Has anyone else tried it & if so how did it work for you & also does anyone have any additional reports besides this one?

healthunlocked.com/api/redi...

[PMRpro Ambassador]

Got to the top right corner of this page and type in Actemra - the brand name of the drug. You will then get a list of posts from all the people who are members of this forum who are currently using it. There are several.

[LarryLeek in reply to PMRpro]

Thanks PMRpro.

[SheffieldJane]

Yes I am quite excited about it too. Unfortunately in the U.K. I believe that they are only currently going to licence it for GCA if we are lucky. It is an extremely expensive drug. I do however sense a swell of positive opinion about in in relation to PMR. I would certainly try it if I couldn’t get off a dose of Pred above 10 mgs if it was available to me under our healthcare system.

[LarryLeek in reply to SheffieldJane]

The article said it was tested on patients w/ both GCA & PMR so I would think it would be available for either one.

[PMRpro Ambassador in reply to LarryLeek]

It isn't. And it certainly is unlikely to be available for PMR in the UK.

The full-scale clinical trial was done for GCA and that is what the approval was sought for and granted by the FDA. The only trials in PMR have been what are called pilot trials where they use something on a small number of patients to see if it is worth the high cost of running the Phase 3 clinical trials which are required for the submission. Other than the pilot trial with up to 20 patients, the only people with PMR for whom it has been used have almost certainly had their dx "extended" to include GCA or RA (it is already approved for RA and has been used for about 8 years I think).

And don't fall into the trap of thinking it has fewer side effects than pred so it must be wonderful. It is a biologic, and potentially has devastating side effects. They are rare (it is to be hoped) but far more serious than most pred side effects. Pred has been used for over 60 years - there is little to learn about it. New drugs may not show their true colours for 10 or more years. I see no point, for example, avoiding using pred for PMR just to be faced with a far more unpleasant long term consequence such as a cancer.

[enan-illuc]

Hi Larry,

I take Tocilizumab/Actemra, 162mg by injection. I think it is very effective and it has helped me cut down on the Prednisone without a Flare. I know it helps cut down on the Prednisone but I do not believe it eliminates it, you just use less. I could be wrong. I have GCA and PMR and I am in the US. I hope this helps.

Enan

[LarryLeek in reply to enan-illuc]

Thanks for the update Evan-illicitly It’s always good to hear some positive news. I PRAY you have continued success. I’m in the US as well but I only have PMR as far as I know & I don’t think I can get it being that’s the case. I think it’s mainly for GCA.

[Sandy1947]

I’m in the US my Dr. will only prescribe for GCA. Not sure that:’s the case for all drs.

[LarryLeek in reply to Sandy1947]

From what I’ve read I think you are right. There’s a small list of things it was approved for & PMR is not one of them even thou PMR patients took them during the studies.

[Rugger]

Larry,

Have a look at the pinned post on the right hand side of this page "NICE and tocilizumab".

[Fiesty]

I've never posted here before, just read and learned a lot. But wanted to tell my experience on Actemra. I took the injections (162 mg) for three months. It did not do anything for me. I could not tell any difference the whole time I was taking it. Also, I had really bad heart palpitations on the days after the injection. Decided to stop after the third month. It is VERY expensive and didn't do enough to justify the cost.

[PMRpro Ambassador in reply to Fiesty]

Thankyou for that - it is interesting and beneficial to hear the other side too

[Insight329 in reply to PMRpro]

I don’t know if STAT is a reliable source or not, but this article was alarming. statnews.com/2017/06/05/act... And a law suit was filed for failure to warn.

[HeronNS in reply to Insight329]

I remember a few months ago there was a discussion here about some alarming effects starting to show up now that tocilizumab is being more widely used. On the other hand there are risks associated with GCA itself and with high dosage pred so I guess you weigh the risks and take your chances. I think these so-called biologics are created using cell manipulation of some sort.

[HeronNS in reply to HeronNS]

spglawfirm.com/defective-dr...

[LarryLeek in reply to HeronNS]

Yea it’s scary for sure. I’ll just stick w/ prednisone even thou PMR patients can’t get it anyway.

[PMRpro Ambassador in reply to Insight329]

It's reliable in that the class acts are happening. Whether the death figures are correct I don't know nor whether Actemra is actually worse than other biologics. But the bottom line remains: biologics are not sweeties and can have as bad side effects as pred, sometimes worse.

[LarryLeek]

Thank you for sharing that Fiesty. Best Wishes for you, I sincerely hope & PRAY that your pain from this crippler will end ASAP obviously our BEST option will always be out faith in Jesus....

[christine2715]

The death figures are a tiny percentage compared to the number of people using Actemra altogether. Like any drug there are risks and of course GCA effects the older person most. It has been used for 10 years for those with RA. Its just GCA that it is new for. I am taking it on the NHS and it has changed my life. I had constant flare ups and 9 days out of 10 felt really miserable. I am now nearly back to my old self except I now have bad knee pain at night - but think that is because I am trying to reduce from 6 mg pred to 5 1/2 mg. After only one infusion the result was dramatic. I now inject weekly myself and otherwise I have not had any effect unless the knee ache is connected to it. I think it must be about 5 months I have been taking it.