Giant Cell Arteritis - Tocilizumab - NICE

[John_Mills]

If you have had any experience of being treated with Tocilizumab for GCA/TA - favourable or unfavourable then please can you contact, me, John Mills ASAP [e-mail] - the NICE assessment committee meets next week and I would like some anecdotal evidence to present at the meeting. Thank you John

[PMRpro]

John - we have quite a few members of the PMRGCAUK HU forum in the USA who are on tcz for both GCA and PMR - are you also interested in their experiences?

I honestly don't think I know anyone on any of the 3 PMR/GCA forums who has been put on it in the UK or who were in the clinical trial.

[John_Mills Volunteer in reply to PMRpro]

Yes please... I do have one or two from the UK who have shared their experience of taking Tocilizumab but certainly having a few more would be very helpful. Thank you

[jinasc]

John

I have emailed you today.

[enan-illuc]

John,

I am on Actemra/Tocilizumab since June of this year, 2017. I have GCA and PMR for about 16 months. I started treatment with 60 mg of Prednisone and am now on 17.5mg. I give myself an Actemra injection, subcutaneous, two times per month, it is 162. The Actemra has to be refrigerated and is shipped overnight. I have taken about ten shots.

I believe it is effective. I take my stats daily, Blood Glucose, Blood Pressure, Temperature, and sleep (using a fitness watch) and I have not had any side effects that effected them. I do not know of any other side effects such as rashes, infections or fevers since I have been on the Actemra.

I did have had one minor Flare, my C-RP was high, but I did not experience any problems (pain) as I had with other Flares.

I think the Actemra does help me and I can 'feel' when the shot is wearing off (not very scientific but works for me). I hope this helps.

Enan Illuc

[christine2715]

I have had two infusions and four injections for GCA and I just cannot believe how much better I feel. The only problem is that my Cholesterol is up a bit - 7 - and I have never had high cholesterol before. My ESR and CPR had been around 80 most fortnightly blood tests for over a year and at one time my CPR was 255. I had tried all sorts of Predisilone sparing things to no avail and had flares every time I went down only 1 mg. even 1/2 mg sometimes. My first and second blood tests were normal for the ESR and CPR which seemed miraculous to me.

[John_Mills Volunteer in reply to christine2715]

Many thanks for this helpful reply - John.