GCA journey

[Ducati3]

Hello, my first post. I was diagnosed with GCA after suffering the usual problems of severe headaches, tender scalp, painful jaw, deteriorating vision and lethargy. Prescribed 50mg of Prednisolone for two days and then because I had visual problems, a 3 day infusion of Methyl Prednisolone, saving my right eye. Mood swings and depression are a problem which I gather are common. I had various tests inc. head and chest CT scans. At the moment on 14mg/day and struggling to get below that so on occasion gone up to 15mg for a few days. After having a recent blood test, discovered I am now prediabetic, which again I think is common because of steroids.

[PMRpro Ambassador]

Hi and welcome!

How long is it since you were diagnosed? You seem to have the measure of what is going on - but I'd suggest having a wee holiday from tapering for a month or two and try again when the weather improves.

And for the pre-diabetes, cut your carbs drastically, especially processed foods and added sugar. Quite a few have reversed that trend by doing so. Pred causes the liver to release random spikes of glucose into the blood - you can't do anything to change that but you can do something about the dietary contribution, It is probably the most important dietary change you can do in PMR and GCA.

[Ducati3 in reply to PMRpro]

Hello. Diagnosed in April. I have cut down on carbs and sugar as I am now pre diabetic. But I could do better. I have a Rheumatology appointment this week and I see several on this forum have asked for regular blood tests to help with tapering.

[DorsetLady PMRGCAuk volunteer in reply to Ducati3]

and I see several on this forum have asked for regular blood tests to help with tapering.

Blood are not the be all and end all for tapering… should be based on how you feel first and foremost, corroborated by blood results if appropriate.

[PMRpro Ambassador in reply to Ducati3]

Regular blood tests are actually part of the recommended management although they seem to have fallen into disregard since Covid. but they can be a disadvantage too - they don't always represent the real state of affairs and how you feel is more important. Just because the markers are normal at one dose doesn't mean that you are going to be able to reduce in the way some doctors think.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Having been there with GCA would say too fast a taper… and please don’t get fixated on the 2 year scenario even if your doctors are…

Have a look at this this for general information and maybe at the GCA stories in the FAQs

healthunlocked.com/pmrgcauk...

From name - guessing you’re a biker! 🏍️.😊

[Angelsmummy]

Welcome Ducati,how my OH loves bikes too.!I am 2 years in with my GCA and still on Pred albeit a much lower dose and a very slow taper devised by DL on this forum.2 years?A lot of people on here will say,” if only”.It will take as long as the disease decides and that is a lot longer than 2 years in most cases.To be honest,I would stay on Pred for life if I could for the security it gives me.Have lost one eye through it so preservation of my other eye is my main concern.Too quick a taper only brings trouble as so many on here will testify.Anyway,wishing you very good luck hope all goes well,xx😜🍾PS,as for the mood swings etc,we could all write a book on here about that,quite normal,even though an awful part of this dsmn disease and taking Pred!x

[Ducati3 in reply to Angelsmummy]

Hello. Yes a biker, owning a Ducati is just a dream I am afraid. Lol. Can I have a copy of that spreadsheet for tapering.

[PMRpro Ambassador in reply to Ducati3]

I'm assuming this reply is for DorsetLady? You can direct your replies to specific persons - just make sure you click/tap on the blue Reply box immediately under a reply from that person.

[Ducati3 in reply to PMRpro]

Ok thanks. I’ll get the hang of it eventually

[PMRpro Ambassador in reply to Ducati3]

HU has its moments!!!

[Angelsmummy in reply to Ducati3]

Lucky that PMRpro jumped on,would not know where to start,we can all dream eh?xx😜

[DorsetLady PMRGCAuk volunteer]

as PMRpro has said assume this is mean for me - as I have chat message… my son’s first proper bike was a Ducati.. think he’s embraced comfort now .. 😊