Back on 30 mg for GCA and hoping to get control at that number.

[Nap1]

Back on 30 mg for GCA was doing quite well and reducing slowly got down to 11 and the last blood test both ESR and CRP were up. So I follow the rules and went up 1 mg. ESR and CRP again up so on rheumatologist advice Went to 20. Last blood test up again. I am now at ESR 43 and CRP of 2.6. Went up to 30 mg yesterday. So disappointed just starting to get my muscles working again. Numbers are moving so fast I am taking the tests every six days wonder when this will level off. GP feels awful he cannot help knows nothing about GCA and in this country your GP refers you out, but there is no one in South Florida to go to. Have Gone through six rheumatologists in the state of Florida. All know nothing about vasculitis. Always been very capable and on my own for a long time. But now at 75 beginning to feel lost. I am moving up north to get some decent medical care. There are 10 doctors mostly in the northern part of the US that are called the vasculitis 10. I will be seeing one of them on April 26. Their real interest is In vascular and autoimmune diseases. I could get lucky.I guess today is pity day I am tired of being tired. I need eye surgery for several reasons and have been waiting for two years to get below 10. almost made it. Thanks for listening. And special thank you to the PRO. By the way does anyone know a GCA person who had to go back to the original dose or higher when having a flare/relapse ?

[DorsetLady PMRGCAuk volunteer]

Hi Nap1,

Sorry to hear you've had to go back up to 30mg after doing so well after getting down to 10mg. Hopefully if this latest increase gets things back under control quickly, it won't be too long before you can start reducing again. But you do need to stay at 30mg long enough to ensure everything okay, and that your ESR and CRP readings are going in the right direction.

Yes, there are instances where patients have had to return to their original dose, hopefully you won't need to, but if you do, then it's for your own safety. But it is very demoralising - I do know.

Your move might make things more difficult temporarily, so don't try and reduce whilst you're doing that, but if it means you may get better health care then I wish you luck.

[PMRpro Ambassador]

Yes - as DL says, several have had to go back to much higher doses with flares, especially in the first 18 months. And 30mg is not particularly high for GCA, 40mg is a more usual starting dose.

I'm sure things will improve once you are up north and not stressing so much about the move.

[Nap1 in reply to PMRpro]

Thank you DorsetLady and PMRpro. I did 40 in 2015 for a month then 30 then relapse. Forty was difficult and so was 30 only because of the muscles. But I kind of know what to expect so it might be easier this time round....just disappointing.