Having to start at 60 mg prednisone all over... - Vasculitis UK

Vasculitis UK

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Having to start at 60 mg prednisone all over again, two years later.

Anniegal profile image
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I was dx PMR in 2/2019 with high suspicion of GCA. GCA Biopsy never completed due to subsequent cardiac stent and early lung cancer dx. Both treated. Good results. Down to 9 and had GCA flare 12/30/2020. Visual and jaw claudification. Treated in ER and Now back at 60. Devastated. Will l ever get off prednisone? Will l have Cushing all over again.

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Anniegal profile image
Anniegal
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PMRpro profile image
PMRpro

You will get lots more response on the PMRGCAuk forum which is just GCA and PMR patients - a few thousand of us ;)

healthunlocked.com/pmrgcauk

Often it isn't really necessary to go right back to the beginning of 60mg but it is safest. You will probably be able to reduce well once this flare is under control.

The appearance of Cushings can often be moderated by care with your diet - cutting carbs, especially processed ones, and added sugar and limiting fruit and root vegetables will help a lot and prevention is better than cure. There are a lot of people ofver at PMRGCAuk waiting to help you with their experiences.

Anniegal profile image
Anniegal in reply to PMRpro

Thank you. I will post there.

AmyS1 profile image
AmyS1

There are newer treatments called biologics for GCA. Call the helpline and ask.

beatrice1955 profile image
beatrice1955 in reply to AmyS1

Can you give me more information what biologics is for GCA? I'm new to this, not finished diagnosis yet but I have a lot of the symptoms.

AmyS1 profile image
AmyS1 in reply to beatrice1955

tocilizumab. Hope that helps

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