ACTEMRA

[Heather270240]

Can someone tell me please who can prescribe ACTEMRA. Can a GP or has it got to be a Rheumatologist? Many thanks.

[PastelsinArt]

I think a rheumatologist. My prescription was always from the hospital, nothing to do with the GP.

[Heather270240 in reply to PastelsinArt]

Many thanks. I'm not under a Rheumatologist.

[SnazzyD]

Specialists prescribe it. What’s happening with you that you think you need it? You don’t have to say!

[Heather270240 in reply to SnazzyD]

What kind of Specialist? Eg can a Haematologist. A long story. My profile will put you in the picture. At present on 20mg of Pred since having PE last April have to get down to 5mg in order to have an epidural injection for spinal stenosis.

[DorsetLady PMRGCAuk volunteer in reply to Heather270240]

Needs to be a Rheumy-and they have to make a case for it to be authorised -so not quite as easy as it might be -

nice.org.uk/guidance/ta518/...

[SnazzyD in reply to Heather270240]

Needs to be the specialist in the field that the Actemra is being prescribed for.

[Heather270240]

Many thanks. I see what you mean.

[PMRpro Ambassador]

Only a specialist and you have to fulfil certain criteria for GCA, it isn't available in the UK for PMR at al and only for a limited time for relapsing/recurrent proven GCA (biopsy or imaging). It IS available for rheumatoid arthritis without jumping such hurdles.

I would have complained about that GP, officially. I realise that he probably dismissed any diagnosis by Johnny Furriner as meaningless but loss of sight is fair evidence of GCA and in most cases GCA needs to be managed by a rheumy. Though you seem to have drawn the short straw there with "GCA only lasts 2 years" which is rubbish as many here will agree. Most people with GCA in the forum needed pred for 4 to 5 years. And it can relapse at any point - even long after that, Not sure about Cordoba but there are some of the top GCA research groups in Spain - I wouldn't diss them (I'm assuming Spain not Argentina!)

I live in Italy, have done for nearly 15 years. My husband died just over a year ago and my daughter's immediate comment was "you need to come back". No fear - superb medical care I get here which includes Actemra for PMR as I need such a high dose of pred to manage my refractory PMR - 18 years PMR and 13+ years pred and counting.

And I would seek a second Haematologist opinion - because without a better reason, THAT is age discrimination.

[Rugger]

Looking at your profile, I think you live in the UK. If you say roughly where you are, I'm sure others will mention some names of Rheumatologists.

I was on Actemra for 2 years during the pandemic (for GCA it's rationed to one year's treatment in the UK, but was extended during the difficult early times). It enabled me to reach zero prednisolone 8 months ago. My PMR symptoms have recently returned, in spite of being prescribed Methotrexate, so I am back on 5mg pred. I mention this because what needs to be discussed if you start Actemra, is what the plan will be when/if your allocation ends. All the best.