Any Experience with Tocilizumab and GCA?

[Brofort]

I am reading that it may reduce the likelihood of relapse and can reduce the long term dosage of Prednisone.

Has anyone had experience with it, good or bad?

[Brofort]

approved in Canada for treatment of GCA

newswire.ca/news-releases/h...

[PMRpro Ambassador in reply to Brofort]

Being approved and it actually being paid for for you is not always quite the same thing in a state funded system as you have. In the UK it is approved only for resistant cases of GCA, i.e. failure with other medications including steroids and methotrexate, and only for a year. Here, in Italy, I think they would have to have submit a funding proposal to Rome to get approval - it is IRO 17K US$ per year.

[Brofort in reply to PMRpro]

Yes I know it is expensive, I'm on Enbrel for Psoriatic Arthritis and without my benefit plan at work I would be spending well over $20k. Luckily its covered for me. Still tough to swallow paying $350+ every time I pick up 4 needles (I have to pay 20%).

So I am hoping my plan will cover her for it as well

[Devoid]

I have been on tocilizumab since October last year having really struggled with steroids and methotrexate.Definitley improving now and able to drop steroids now on 9

[Thelmarina]

I don’t know what it is but what a fabulous name! I feel it should help! Others will be along with their experiences. Good luck! 🌺

[PMRpro Ambassador in reply to Thelmarina]

There are some even better monoclonal antibody names:

medicinenet.com/monoclonal_...

Just scroll down a bit ...

[GratefulBailey]

I, like Devoid, have been on Actemra since October (nice to know!) because of severe side effects from prednisone. I am noticing an improvement in the level of fatigue and now am getting only occasional headaches and the odd brief slight pain in my eye. I am very fortunate that the cost is covered (in Canada) when you are approved. My rheumatologist gave me a tapering schedule in December that would have me off prednisone by March. However, his schedule was much too drastic for me, and I am now using the DSNS method and am optimistic that this will work for me. (Down to 8/7.5.) This drug is making such a difference for me.

[Brofort in reply to GratefulBailey]

I'm in Canada as well, are you indicated that your provincial health plan is covering the costs? I am hoping that my benefit plan at work will. I am also on a biologic for psoriatic arthritis and it is covered by my benefit plan, so hoping hers will be as well.

[GratefulBailey in reply to Brofort]

As far as I know, it’s being covered by Joint Health, a Roche patient assistance programme. I don’t know if my benefits are covering anything - the person in charge of my case said they’d contact my insurance to see if they would cover any of the cost, but I haven’t heard from them. Just very grateful somebody is covering it.

[Jim-CJ]

Hi Brofort,

My wife has been on Actemra for almost two years and now down to 4mgs of Prednisone and doing well.

Take Care,

Jim & CJ

[luv2read]

I have been on Actemra for almost a year now. I'm down to 5mg of prednisone and doing great! The only downside is, it makes me really tired within 24 hours of injecting. Other than that and the price, I would recommend it.

[Chrisellie]

Started 40mg Prednisolone Nov 18

0 mg by 27 September 19

Will have been on Tocilizumab Actemra for 12 months in Feb 2020 I am due to end then.

Has worked for me. Some ups and downs but downs may have been due to pred reduction as feeling a load better now.

If I stay in remission after this it is definitely worth it. Although not everyone can take the injections, some need infusion.

[Grammy80]

I have been on Actemra for about 2 and a half months, at first every other week and now each week. Because of my medical history I was not a prime candidate but the pred wasn't doing the job. So far so good....

[misha453]

I have been on Actemra since September 2019 and have been able to taper my Prednisone dose. It has helped a lot with the pain and fatigue of GCA & PMR. I was prescribed it for a GCA relapse.

[Tamtan2]

Not yet but I am going to be put on this shortly. Take care find out all you can as they put me on methotrexate and alendronic acid and I had the worst time ever. 🙏🏽

[Blackcatlover]

I have been on Actemra for two and a half years. I couldn’t get below 15mg of Prednisone without flaring. Tried adding Methotrexate but it didn’t help- just made me very sick. Since starting on Actemra I am down to 4.5mg of Prednisone. I do the IV treatment once a month. I’m very tired for one day and have some occasional eye pain- all very manageable. Tried to space out my IV treatments to every six weeks and decreased my Prednisone to 3mg but had a flare. I’m very lucky to be in the US so my time on the Actemra is not limited. Good luck.