Just wondering...

[beringer]

Hi Again. Looking for ideas, 3-4 times a month I get a tight, full feeling in my head & kinda foggy brain, nothing matters to Me, don't feel like eating, some grumpy, depressed, a real chore to put one foot in front of the other, just not Myself. All blood levels are normal. On Actemra double dose every 30 days. Anyone think this could be a Lil flare- up of my GCA? Dr. can't answer this question.. I don't think the Drs. Know much about this.. okay there it is. Any ideas??? I love this site, I check in at least weekly. Take care all.

[evafel]

No ideas but I feel the same as you do. I am on Metotrexate and Humira. Before when I only had pmr I wasn't like this, I was diagnosed with GC a year ago.

[Celtic PMRGCAuk volunteer]

beringer, if there is an answer to your question, I doubt you will find it here as there are unlikely to be many, if any, patients taking Actemra for GCA on this site.

The generic name is Toxilizumab, generally prescribed for patients with rheumatoid arthritis. A large trial has recently been completed into its use in GCA but I haven't heard of any results as yet. If I remember correctly, it was suggested that the trial itself should involve Toxilizumab being taken alongside the steroid, Prednisolone, rather than alone - the latter is to date the only tried and tested treatment known to work for GCA.

I would have thought your symptoms, especially as they appear to be intermittent, are more likely to point to them being a side effect of your treatment - many of us will recognise such symptoms as a side effect of our treatment with Prednisolone.

You might at least find some answers regarding side effects from distributors taking Toxilizumab for RA on the RA community on HealthUnlocked.

[Caro12line]

Hi beringer. Yes! I can relate to those symptoms. Feel totally wiped out and so very depressed. No appetite and generally feel yuk. But no pain in my head. I have GCA and taking Pred... Currently on 10mg ... I just thought it was the Pred or maybe Alendronic Acid? As it seems to happen either the day or day after I take it. Like you my bloods are fine, so don't think it is a mini flare.