GCA and Tocilizumab

[christine2715]

I have just heard that I have funding and approval from the NHS to take Tocilizumab and will be having my first infusion this week or the week after. Then I have weekly injections after. I wondered if anyone knew if there are any immediate effects. Also do you go on taking other medications. I am on 6 x 500 g. Mycophenalate (cellcept) as well as Pred. I have been so ill for nearly 18 months and I understand that this new drug for GCA has a 55% chance of remission in about 6 months. I really am hoping to have some success. Have read that there have been some negative reactions but the percentage seems small. Would like to find out more about it before I go to get the infusion. I am going to see Professor Das Gupta beforehand, on the day but would like some advance information really.

[Tj2017]

Hi Christine,

I've been taking Actermra injection for 6 weeks. I have had Minimal side effects. A small rash at injection site and maybe chronic fatigue. The last few injections I have noticed a reduction in symptoms and have been able to reduce the prednisone. Went from 70 to 45. I have more side effects from prednisone than Actermra. I am anxious to reduce the prednisone.

Good luck.

TJ

[Marie1479]

Hi Christine,

Click on my name, that will bring you to my posts regarding Actemra. It's been a positive experience. Like TJ, I had more side effects from Prednisone than Actemra.

[Buddyk]

I have been on actemra infusions once a month for 16 months now. I have no side Effects at all ....I have fatigue but believe that is a symptom of GCA. I have asked about going off and dr said I'd be having a lot more symptoms if I wasn't on it. I do not take prednisone anymore. This past week I feel the best I've felt in 16 months or since I've been diagnosed with GCA.

[Jackoh]

I know this question came up before and if I remember rightly I think PMRpro was going ask someone about this but they were on holiday. A long introduction to the question! - Do you continue to take actemra after you have come off pred and for how long? From what you have explained Buddyk this seems to be what is happening in your case and for the foreseeable future.

[PMRpro Ambassador in reply to Jackoh]

As Klah says it isn't clear yet - use in GCA is relatively new. The study is in the stage of monitoring for relapses - I assume the administration of Actemra is slowed and stopped at some point so they can see how long remission lasts. That was what Prof Mackie assumes too. I do know of people who stopped the Actemra so that is obviously the ultimate aim. I know of one person who stopped for about 6 months and then GCA symptoms returned so she was to start the Actemra again and of one person who's been off it for a year with no relapse.

In RA the biologics are used in an ongoing fashion as long as they work - but GCA does go into remission anyway , RA rarely does. Maybe it will be the same as pred with Actemra - reduce the dose and see if there is a return of symptoms since there is no definitive test for PMR and GCA.

[Jackoh in reply to PMRpro]

Thanks for explanation.

[Klah]

I have had PMR For 3+ years and could never taper below 7-1/2m of prednisone without a major flare. Today I had my 4th Actemra infusion...no side effects so far. Have reduced the prednisone from 8m to 5m since the end of May. No PMR pain, but still have some fatigue. Somehow feels good to take less prednisone (psychological?) but I know I do not have the pain because of the other heavy duty drug!! The plan, however, is to get off the prednisone by reducing 1m a month and then go into remission. My impression is that I will continue with the monthly infusions or the bi-monthly injectibles for a year or so...?..not sure anyone really knows because the drug is relatively new and everyone is different...using the drug for different conditions and in conjunction with other ailments possibly. Aren't you glad you asked? As a side note...I do feel better right after the infusion, but it then "wears off" in terms of energy..?...I am always @ready" for the next treatment.

Hope this helps.

[christine2715]

Many thanks Klah

[Jackoh]

Thanks Klah

[enan-illuc]

Christine 2715,

I have had five injections of Actemra over the last nine weeks and Actemra does seem to work. I have reduced my Prednisone from 23mg to 17 mg in that time. I have GCA/PMR and began at 60 mg of Prednisone in August of 2016. Good luck with your treatments.

C