New drug

[Meg333]

Please could you tell me is tocilizumab drug available.I read about it in the paper.Thank you.

[SheffieldJane]

It has recently become available for GCA patients in the UK under the brand name Actemra. There may be circumstances when it would be prescribed for PMR if for special reasons you could not take Pred which remains the first line of defence against our diseases.

[christine2715 in reply to SheffieldJane]

I am taking it through Southend hospital on the NHS where Professor Das Gupta has been pioneering it. I am 2 hrs from Southend but my consultants visits have been well worth the trip. I have had two infusions and 4 injections so far and its amazing - I am so much better! It has caused me to have high cholesterol - only up a little - but I had never had that before. Trials showed 55% of 250 people with GCA went into remission in about six months - some took longer. They have to apply for special funding and you first of all have to try all other things as its so expensive. 10K. I had mycophenalate and about three other steroid sparing things first to no avail. At the moment I have a sinus infection and that has meant I must hold off one injection while taking anitbiotics. I really hope the GCA sympptoms dont return as I was so very ill for over a year and a half.

[Hindags]

If you search Actemra on this forum you will find several discussions of tocilizumab aka Actemra.

[Klah]

I have had 7 infusions of Actemra. This has allowed me to taper from 8m to 4m in 5 months. I have had PMR For almost 4 years and have been unable to even stay at 7-1/2m...even using the DSNS method. I am traveling now, so I will start the injectable Actemra at the end of the month. I am feeling the benefits...no pain, some fatigue...much less brain fog.

[PMRpro Ambassador]

Are you in the UK Meg? It is already being used in the USA for both GCA and for PMR.

NICE was/is meeting about now to discuss whether it should be approved for use in the NHS for GCA. It is already been used on a case by case basis so that depends on your consultant feeling it is justified for you. I think it is very unlikely that it will be used in the near future for PMR but I do think it is likely to be made available for GCA patients although whether everyone will be considered or only those patients who have problems with prednisolone such as not responding well to pred, pre-existing conditions or severe side effects.

[Marie1479]

I’ve been on a Actemra since April 2017. Take a look at my posts. All positive!!

[enan-illuc]

Hi Meg333,

I have been on Actemra for GCA since June 2017 and no problems yet. It does help me.

Enan