New journey? : I was diagnosed with PMR in April... - PMRGCAuk

PMRGCAuk

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New journey?

SanG55 profile image
6 Replies

I was diagnosed with PMR in April 2020 and have reduced from initial dose of 40mgs of Prednisolone to 5mgs, where I have become a bit stuck. Today I have been diagnosed with GCAand put on 40mgs and return visit to GP next week, with blood tests in between. Just wondering what my journey will be like now, how long on increased dose, any limitations, same pred effects as 2020? All those sort of things. Have looked for articles but not found one, so maybe somebody could signpost me or maybe we’re all individuals on a different journey? Thank you, as always, for your support, knowledge and willingness to share, I really appreciate it

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SanG55 profile image
SanG55
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Bcol profile image
Bcol

If you edit your title to "New Journey With GCA" you will see lots of relevant posts appear.

piglette profile image
piglette

I am so sorry that this has happened.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Sorry to hear your news -but plenty of info in FAQs -always a good place to start -

As for treatment - generally more of the same - but at a higher intensity- although as you started at 40mg last time around maybe not ,

Others experiences -

healthunlocked.com/pmrgcauk....

General info -

healthunlocked.com/pmrgcauk...

Sophiestree profile image
Sophiestree

what a bitter blow for you, but it sounds like you have good care going on there to recognise it all.

No rushing to get the dose down when you're dealing with GCA, take your time.

WilfDog profile image
WilfDog

So sorry you are back on the treadmill of higher dose Prednisolone. However, please don't be despondent. With vigilant monitoring and self care you should be able to reduce your Prednisolone but unsure whether you will be unable to completely come off it. However 5mg Pred is a maintenance dose and often side effects lessen significantly at this dose. My mum had Temporal Arteritis decades ago and managed to reduce her dosage of Pred. She unfortunately had other illnesses, but her Prednisolone was managed well.

There are many on here who will have a lot of knowledge and information about GCA. I hope your consultants continue to monitor you well. Loads of luck.

Grants148 profile image
Grants148

l am sorry l cannot help you much with this as l only had PMR which started in 2016 .I lowered the dose of Pred. carefully but stayed on 5mg. throughout the Covid Pandemic because l am asthmatic and it was helping me to use my inhaler far less than l used to. I am now stuck on 3mg..and find lowering past that very challenging .l have been on the medication far longer than l should .l know others that have successfully come off the Pred. eventually after far less time . I hope that you will be able to do the same ,but PMR and GCA can both be unpredictable and flare up if the dose is lowered too quickly .

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