GCA and Actemra.

[christine2715]

Hello all, I have been on Actemra (tocilizumab) for GCA for 1 yr 9 months. I was on the drug trial. For me it has been marvellous and I started at one injection per week, self injecting and am just starting one every 4 weeks. This first four week one meant that right on the last day of the four weeks I had a relapse which the rheumy said meant I am not in remission but the injections are keeping it at bay. These new biologic drugs block the path of the cause of GCA I believe. I have had no side effects at all from the injections and pred. now down to 2 - 2.5 mg. Still get PMR so still very achy at night but so so much better than the vegetable I had become. I am on the Southend drug trial but in fact I live about two hours from Southend. I mistakedly posted this in answer to an old post and the PMRPRO suggested I re-post it. Best wishes to all the lovely people on this site.

[Hidden]

I am glad you reposted. It sounds like you are getting on with the treatment. I hope it continues to work for you. I am sure people who are considering the Actemra will appreciate your input.🌻

[PMR2011]

Glad it is working so well for you. I too have been on Actemra 1 1/2 years. It has been great for me too. No side effects, been off Pred since Feb. my Interleukin6 is still elevated so we know the disease is still active so staying on weekly injections for now. (PMR for 7 yrs then GCA for 2). Other than being very germ conscious am living “normal” life (had almost forgotten what that was like 😊).

[PMR2011]

Hi DadCue. I started Actemra when on 20mg Pred. I know folks who started when on 40mg pred. It allowed me to taper much faster (from 20mg to off in 8 months) and I was very conservative with the last 1-2mg as I was afraid to stop having been on it for 8+ years. Funny how your thinking shifts. I tapered 5mg every 2 weeks until at 10mg. Then slowed to 2.5mg. When I got to 5mg slowed it more. I was lucky the adrenals kicked in pretty readily. Of note, it took about 3 months on weekly Actemra before I really felt a difference and started tapering.

[PMR2011]

That stinks! Sounds like the Pred was keeping the other condition at bay. Hope you can taper readily back to a low dose that keeps any AI disease controlled.

[PMRpro Ambassador]

Thank you!!!

[PMRpro Ambassador]

That is the idea of how to use Actemra. You start pred as the known and guaranteed means of managing the GCA inflammation and also start Actemra at the same time, following a chosen tapering scedule which is considerably faster than the norm. There have been no trials done to assess if Actemra on its own is adequate to prevent loss of vision so it ould be unethical to NOT use pred in GCA. And any rheumatologist who had read the study documentation should be well aware of that.

If you can get to 10mg pred for GCA I would dispute the need for Actemra...

[christine2715 in reply to PMRpro]

I was really ill on 10mg with constant flares every time I dropped 1/2 mg. I had to go down rapidly to 7 mg to have a PET scan to check I still had GCA before I took the trial. The result of that flare was awful. For me Actemra has given me my life back. And I had tried every kind of steroid spacer.

[Blearyeyed in reply to christine2715]

Great to hear another positive response to this drug .

I have been told that I could be put on it as soon as diagnosis proves another condition which makes long term higher dose steroid use less advisable for me .

For a long time , all I heard was bad news about Tox. which meant I was feeling quite happy for the delay in case taking it became another bad experiment.

Now I am hearing far more positive experiences of it I will feel more confident to make the change.

Thanks xx

[Hidden in reply to christine2715]

I am so happy to hear Actemra has been so good for you i am on my 4th monthly infusion this week,but i still have not had relief from pain,but hoping after this one i will see improvement.xx

[enan-illuc]

Hi DadCue,

I began Actemra when I was down to 23mg of Prednisone from 60mg and could not get lower. I have been on Actemra for about two years and am at 3mg of Prednisone. I hope this helps.

[Blearyeyed]

Thanks for the positive experience info on this drug , as I am likely to be put on it myself in a few months time once my other diagnosis is confirmed it gives me confidence in trying the drug change , and actually getting the pain relief I haven't been able to achieve on the lower doses of Pred I have been allowed .

Hope things keep going well for you xx

[PMRpro Ambassador]

It is still no more reliable than ESR/CRP - if works for some people, not for others. It was something I checked with Prof Mackie, wondering why it isn't done more often, other than that not all labs have the equipment to do it.

[PMR2011]

Not often. It’s an expensive test that not all labs do. No labs in my state run the test, it’s sent to Mayo Clinic. My rheumatologist runs it 2-3 times a year.

[enan-illuc]

Dadcue,

My Rheumy said to "take my time" tapering and when I tapered down to zero Prednisone I would still take the Actemra but at longer intervals; suck as three week intervals, then four week intervals. I am being very careful as I had lost my sight in my left eye but got it back because my eye Doctor acted very fast. I started out at 60mg so 3mg does not bother me too much.

[Hidden]

Glad i read your post,the good feedback of Actemra has giving me such a boost.On my 4th Infusion this week had some problems but hoping this one will help me.take care.x

[Stkeyna]

Sorry to hear about the withdrawal of the 'toc' drug for you due to funding and I sincerely hope it all goes well. I have had GCA for over 10 years now and I can't now get below 10 mgs of pred. in fact just gone back to 11 mgs, as every time I try to drop to 9.5mgs, I appear to get a mini relapse! Anyway my consultant has mentioned the 'toc' drug, and stated he would refer me, but at the same time he didn't appear over keen due to its supposed side-effects. Just wondering if there is any advice you can offer. It appears to have gone very well with you!

Apologies that is more about me than you!

Thanks,

Ian

[christine2715]

I have had no side effects at all and I was just like you, couldn't get down below 22mg. Now down to 2mg pred. Only thing is that if in UK can only have it for one year.