Has anyone tried Actemra for GCA and what was your experience
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So sorry for your painful difficulties..I would really try and find a Dr that specializes in Lyme and have further testing . Symptoms sound quite familiar to a friend of mine as so many of yours appear neurological and Lyme does that it is such a new phenomenon by hat getting a real accurate result is very challenging
I have PMR..having been diagnosed Jan 2019 .It was severe at the outset with stiffness but not pain but prednisone helped me so much
Everyone talks about it being so nasty but I am not so sure ..with monthly blood work to check blood sugar and regular blood pressure checks and taking ACTONEL to protect the bones I always feel it has done so much good . I also keep an eye on my weight so feel it is more of a miracle drug with side effects like all drugs but they are all controllable.So many other drugs out there are a definition of nasty
If you go to the Heathunlocked.com and type in PMR/GCA you will find.
A Wealth of information about these issues
Just curious to know the reason for no wine with Prednisone.I am assuming it also means no alcohol .I am on Prednisone and drink wine with dinner
So far no issues in blood work or effectiveness
My Rheumatologist says that if you have PMR the re occurrence is very possible unless you go slow and easy with decreasing Pred..if need be you may need to play with it slightly and increase when needed
My CRP 69 at the outset and now down to 5 but I am still on 10 mgs but will take a year before I may or may not be off it even at CRP of 5 still have stiffness very manageable however
My Rheumy is weaning me down also but more slowly than that . He said that the chance of a reoccurrence is far greater if you come off too quickly. So 15 mgs / 2 weeks12.5/2 weeks 10/ 2 weeks and then 1 Mg per month so I will be on for at,least a,year .. he is monitoring blood work monthly however so have to trust him