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.

[lizg0017 in reply to PMRpro]

Hello PMRpro and ladies, I was diagnosed 2018 with PMR. Never got off pred. I made it down to 5 and stayed there for several years. Last summer, my eyes started bothering me and I was getting headaches. My rheumatologist seemed a little bothered that I didn’t come to her sooner as I could have gone blind. They did ultrasound on my temples which came back negative. She put me on 60 mg Pred to which I’m down to about 9mg now. I’ve never been diagnosed with GCA. I don’t have the scalp pain. Sumatriptan does help the migraines which I’ve been told it won’t help with GCA pain. It helps me. My question is how do I know it’s GCA or TMJ? My left jaw is tender. And when I sleep on my left side, the left side of my head feels like painful inside. My eyes are always watering. I try using drops as much as I can. My doc wants me to get down to 8mg and not go above that. However, my head feels weird even at 9mg. At 10mg it seems symptoms subside more.

Is it GCA or TMJ?

Thank you for a great website.

[DorsetLady PMRGCAuk volunteer in reply to lizg0017]

This would be better as a new post, then more are likely to read it... not everyone saves all the posts like PMRpro and I do.. but will just say do you have jaw claudication - that is it hurts [usually both sides] when you chew and then ceases as soon as you stop chewing? Or is it a more constant pain?.. Would say from how you describe it's more likely a TMJ issue..

.. and just because you don't have scalp pain doesn't automatically rule out GCA.

Rheumatologist was obviously concerned enough about GCA to put you on such a high dose... and the fact that a slightly higher dose of Pred helps, suggests they may be some GCA or PMR or both lurking.

.. when you say - My doc wants me to get down to 8mg and not go above that. What doctor do you mean? Rheumy or GP? Whichever it is needs to be trying to find out what it is that is causing issues.

[lizg0017 in reply to DorsetLady]

Ok I will copy and post as new. Thanks. I don’t have jaw claudication. It’s just the left side of my jaw and head. And my eyes are bugging me. Watery and sometimes blurred maybe due to watering. So those symptoms all can point to gca but it could be other causes too. It’s my rheumatologist that doesn’t want me to go higher than 8 if I can get to it. Agree, with pmr for so many years, who knows what’s lurking. Thanks so much.

[DorsetLady PMRGCAuk volunteer in reply to lizg0017]

Okay -will copy my reply to that -just for completeness..

[PMRpro Ambassador in reply to lizg0017]

I think you should maybe repost this as a thread in its own right - only the author, DL and I are likely to see it here in the middle of a thread.

You don't always get all the listed symptoms - and obviously your rheumy was convinced enough by your symptoms to make a clinical diagnosis of GCA and treat it as such. You use the terms my rheumatologist and my doctor - are they different people? I would be more interested in what your rheumy who made the decision it was GCA thinks than a GP to be honest - GPs often are fixated on reducing pred rather than the dose you really need.

However - this may be of interest

pmc.ncbi.nlm.nih.gov/articl...

where Prof Dasgupta says

"The potential to confuse these two diagnoses is illustrated by another reported case in the literature where the initial clinical diagnosis of CH had to be revised to GCA after a positive temporal artery biopsy.10 The two conditions cannot be reliably distinguished by their responsiveness to treatment since cluster headache episodes have been shown to respond to steroids9 while sumatriptan has also been shown to be effective in GCA.11 The diagnosis of both these conditions rests almost entirely on clinical grounds, thus reinforcing the importance of a good history to help make the distinction. The relatively rapid tapering of steroids without a return of the original headache raises the possibility that the correct diagnosis in this patient had been that of CH from the outset rather than a case of GCA complicated by CH. "

Unless you can be 100% sure, I think that you have to treat for GCA - but it doesn't mean there isn't something else going on as well. I would get back to your rheumy.

[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 .. 😊