Dizziness related to actemra or prednisone

[emmamom]

I have been on prednisone since april and started also on actemra every other week at the same time. Recently my rheumy started me on actemra every week while tapering off prednisone. I have been dizzy and nauseated almost every day since being on it every week. Anyone else had similar issues?

[123-go]

Sounds horrible! Have you reported the symptoms?

[emmamom in reply to 123-go]

Am going to if don't let up soon. Thank you!

[PMRpro Ambassador]

Any idea what her logic is for increasing the dose before tapering you off pred? The increased dose does put you at greater risk of infections - is that a possibility? Or did it start as soon as you got weekly jabs?

[emmamom in reply to PMRpro]

I thought of that. She put me on it right away so I could hopefully get off the prednisone sooner. When I had a flare, she increased dose to once a week.

[emmamom in reply to PMRpro]

It started when I went from once every other week to every week.

[PMRpro Ambassador in reply to emmamom]

Strange. What dose of pred are you on? And are you on it for PMR or GCA?

[emmamom in reply to PMRpro]

Right now I am on 12 mg a day. Started at 40 mg day in April for both PMR and GCA.

[PMRpro Ambassador in reply to emmamom]

One factor might be that GCA isn't just due to one mechanism creating inflammation. Because of this, Actemra only gets about half of patients off pred altogether, the rest continue to need a low dose of pred ongoing to keep symptoms that are caused by the other two underlying causes at bay. This seems to be about 8-10mg. If you were one of those - it could be the GCA making itself felt. But it is a big coincidence it started when the dose of Actemra was increased.

[emmamom in reply to PMRpro]

Thank you for your input!

[Rajuguide]

My wife is also in same pattern of treatment for gca 5 months back started 60 mg with actemra weekly , now on 10mg she a got flare jumped to 12.5There is various side effect of actemra , my wife get pain in head and legs for 2 days after taking acterma. Still i do not understand what is benifit of acterma ?

[PMRpro Ambassador in reply to Rajuguide]

Actemra is the only drug licensed for GCA that stops the production of the inflammatory substance IL-6 which is what causes the majority of the inflammation in GCA. Because less IL-6 is produced, less pred is required to manage symptoms and, in about half of patients, the production of IL-6 is stopped and the effect persists for some months, even years, after stopping the Actemra. In the other half of patients symptoms are caused due inflammation from 2 other sources so Actemra doesn't work 100% for them but it does achieve a much lower dose of pred.

[scottygirl73]

I had a few problems at start of Actemra but they resolved.On day i take Actemra i take a anti sick pill as i can feel nauseated sometimes even next day i need one.Had couple of dizziness feelings but not very often.I would talk to your Rheumy or Nurse,i was so ill on Methotrexate i had to stop it,mabey Actemra is not for you.Take care xx

[emmamom in reply to scottygirl73]

thank you!