GCA flare or not flare

[Vikinga]

Hello All.

A week ago I posted my concerns regarding aneurisms that may develop when having extracranial GCA (Large Vessel Vasculitis). Thanks to PMROpro and DL for their answers.

My GP supports me about getting MRI's for detecting aneurisms and he is doing some reading because in Medical School he did not get any training on GCA and he said that in his 34 years of practice I am his first GCA patient. (The incidence of GCA in Canada is 1 in 100,000 people)

In March 2024, when I was diagnosed with GCA, I started taking 60 mg prednisone for 5 weeks and then in September I was on 9mg prednisone. Covid 19 in September caused my CRP to increase but my Rheumy did not advise me to increase the prednisone until CRP reached 40. His advise was 20mg prednisone for a week followed by 15 mg for a week. Of course that did not work and I am now taking 20mg for 3 weeks without his agreement. On January 1st I started adding 5 mg because I am not sure if I have a flare or not. The symptoms I am experiencing are erratic, low to moderate jaw pain once a week, and disappears quickly, same thing happens with a throbbing headache pain and in the area above the left eye. These pains disappear fast do not last and are more common after straining.

The erratic nature of this pains that disappear so fast makes me wonder if this is a GCA flare or not?

My question is : tomorrow should I go back to 20mg prednisone or continue with 25mg ?

Your comments will be greatly appreciated!

Vikinga

[DorsetLady PMRGCAuk volunteer]

if the increased dose doesn’t seem to be doing much then little point in continuing on it.. so maybe back to previous- and it doesn’t sound typically GCA. Have you considered TMJ/TMD issue?

webmd.com/oral-health/tempo...

[Vikinga in reply to DorsetLady]

Thank you DL. Yes it could be TMD.

I stopped taking the additional 5mg this morning.

Vikinga

[123-go]

Well done to your doctor for reading up on Giant Cell Arteritis although his diligence isn’t helping you right now. I do feel that you need multi -disciplinary involvement to rule out other conditions, for example, Opthalmology, Neurology, Radiology…I would push for the MRI that your rheumy supports.

[Vikinga in reply to 123-go]

Thank you 123-go for you reply. It is myself who wants the MRI's for aneurisms, not mu Rheumy. Nearly impossible to get a multi-disciplinary involvement for GCA here in Canada.

Vikinga

[123-go in reply to Vikinga]

Apologies: when I read that your doctor supports you in wanting an MRI I took that to mean he will refer you. The following link provides lengthy, up-to-date information about diagnosing GCA (taken from a Canadian publication). You may find the concluding paragraph particularly interesting:

utppublishing.com/doi/10.22...

I should mention that I have a personal interest in GCA/LVV having been diagnosed with an ascending aorta aneurysm in 2020. I am convinced that the aneurysm developed as a result of inflammation building up and lack of due diligence on the part of my then GP until my CRP level reached 115 when I was finally referred to Rheumatology. By the way, I have been advised not to lift, push or pull anything heavier than 30 pounds and, among other things, not to shovel snow! You will see a lot more of that particular weather phenomenon than I 🙂.

[Vikinga in reply to 123-go]

Hi 123-go, Thank you for sending me that Canadian publication, lots of good information on LVV.

How did you deal with your ascending aorta aneurism in 2020? I assume that if you are careful with straining and not pushing or pulling anything heavier than 20 pounds.

you still have it?

BTW, my hubby shovels the snow !

Regards,

VIKINGA

[123-go in reply to Vikinga]

I was asymptomatic when my aneurysm was discovered in 2020 by my vigilant rheumatologist performing routine ultrasound scan and confirmed by PET-CT. It measured 4cm in diameter (considered small to medium in size). Further PET-CT requested by my rheumatologist in 2022 showed no change in measurement or in aortic root which was reassuring. Intervention isn’t needed at this stage but I am monitored through two-monthly full count blood tests with a careful watch on CRP and liver function (I am telephoned by my Leflunomide prescriber every three months to check on these). I have six monthly reviews in clinic and will ask about further monitoring at my next appointment.

Aortic aneurysms do not typically shrink on their own but there are actions you can take to potentially mitigate growth. It is important to stay active without putting pressure on the heart and I enjoy walking (not so much in this current cold, damp part of the world-UK). I do all my own housework with a helping hand from my husband. My diet is generally ‘healthy’ inasmuch as I don’t eat deep fried fatty food, foods containing preservatives or artificial additives or sugar -laden products. Fish, chicken, green veg and fruit, some nuts and seeds are my mainstays. I do confess to succumbing to chocolates and biscuits over the festive season and the odd small glass of wine 🫢.

I hope this answers your question.

[Vikinga in reply to 123-go]

Thank you so much 123-go for answering my question with excellent information about your aneurism. It is very helpful to know how to manage one that it is about 4cm in diameter.

I have a diet similar to yours, but i need more exercise, I have a treadmill that I am going to start using daily until the winter is gone in Canada.

All the best!

VIKINGA

[123-go in reply to Vikinga]

I’m always happy to bang on about my condition 😉. One thing I will stress is that you continue to do your own research wherever possible and be your own advocate if you feel that something isn’t quite right. Oh! and don’t overdo the exercise: pacing is the key and also extending the range of exercise so that the same muscles don’t become fatigued.

PS. We have friends in BC and have been made very welcome in the past. Canada is a beautiful country.

[Vikinga in reply to 123-go]

Hi 123-go Thank you for sharing information on your aneurism condition, for me is very important to find out how a rheumy deal's with such a problem. I suspect I might have LVV based on research indicating that if headache is not one of the initial symptoms of GCA, then it could be Extracranial GCA (LVV).

I have not read in this forum about anyone that indicated that headache was not present when diagnosed with GCA. Am I wrong DL?

Yes, Canada is a beautiful country, unfortunately the Health Care System is collapsing!

Best,

VIKINGA

[RunnerJoe in reply to Vikinga]

I was diagnosed with GCA and I didn't have any headaches. My GCA was confirmed with a temporal artery biopsy. I had most of the other symptoms of GCA - vision problems, jaw claudication, scalp tenderness, etc. One of my doctors told me that roughly 20% of people who are diagnosed with GCA don't have headaches as a symptom.

[Vikinga in reply to RunnerJoe]

Hi Runner Joe, Thank you for your clarification! makes me feel a lot better.

Having an experienced doctor able to answer uncommon GCA questions is wonderful!!

Sincerely

VIKINGA

[PMRpro Ambassador in reply to Vikinga]

Yes, you are incorrect - headache is only the presenting (reason you went to the doctor) or initial symptom in fewer than 40% of cases, though it appears in 72% of cases examined:

"The most commonly reported symptoms in patients with GCA are as follows:

Headache (initial symptom in 33%, present in 72%)

Neck, torso, shoulder, and pelvic girdle pain that is consistent with polymyalgia rheumatica (PMR; initial in 25%, present in 58%)

Fatigue and malaise (initial in 20%, present in 56%)

Jaw claudication (initial in 4%, present in 40%)

Fever (initial in 11%, present in 35%) ...

Patients with mild GCA may complain only of generalized muscle aches and pains and unusual fatigue. [55] These may be mistaken for symptoms of PMR."

emedicine.medscape.com/arti...

[DorsetLady PMRGCAuk volunteer in reply to Vikinga]

My GCA (cranial) certainly had headaches - and pretty horrendous at that..

picture shows are affected by different disease we talk about on here.

Areas

[Bluey-1 in reply to DorsetLady]

While discussing my GCA (cranial) symptoms with my optometrist a while back he said ‘you’ve had the worst headache you’ll ever have’. Summed it up exactly!

[DorsetLady PMRGCAuk volunteer in reply to Bluey-1]

He’s not wrong there ! 😑

[Vikinga in reply to DorsetLady]

I am glad I never had that horrendous headache that Bluey-1 and you suffered!

Vikinga

[Vikinga in reply to DorsetLady]

Thank you for the picture!

Vikinga

[Angelsmummy in reply to Vikinga]

Hi V,never had a headache with mine,just pressure in head,neck pain,ear pain and the most vile groin and pelvic pain that made me feel like I was on a stretching torture rack.Also,like DL,I lost sight in one eye before being diagnosed .Good luck to you,xx💐😜

[Vikinga in reply to Angelsmummy]

Sorry to hear that you lost sight in one eye before being diagnosed. Although the incidence of GCA in Canada is 1 in 100,000 my mother in law had temporal arteritis about 30 yrs ago. She said the headaches were horrendous for 6 months , doctors were not able to diagnose GCA those days, until an old doctor, without any test told her " I think you have temporal arteritis" He prescribed prednisone without any reliable tapering. She developed moon face and somehow after 4 years with relapses "here and there " she was in remission. GCA disappeared from her life, and lived a happy life until she passed away at 101 yrs a couple of years ago. When she was alive I had PMR and I kept my fingers crossed hoping that I was not going to get GCA, but I did. Such is life!

Vikinga

[DorsetLady PMRGCAuk volunteer in reply to Vikinga]

She said the headaches were horrendous for 6 months , doctors were not able to diagnose GCA those days, until an old doctor, without any test told her " I think you have temporal arteritis"

Some still seem to find it difficult even today!

[Angelsmummy in reply to DorsetLady]

Ain’t that true..,Why aren’t you sunbathing,isnt it time?😜👙

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

It’s 8am.. so sitting up in bed sifting through emails looking over harbour - too early to be up and out!

[Angelsmummy in reply to DorsetLady]

Early!.,mind you,you are on your hols I guess.At least you are escaping the worst of our dire weather.Just thinking that it is lucky that PRO isnt in Scotland.AWFUL there at the moment!x☃️❄️🌨️😜

[PMRpro Ambassador in reply to Angelsmummy]

Not perfect here!! The freezing rain yesterday was a joy NOT - rain onto streets and pavements that have been at -10C and below every morning for much of the last 2 weeks!!!!

And a possible repeat tomorrow ...

[Angelsmummy in reply to PMRpro]

Well,don’t you go slipping over and breaking something.Guess you wish that you had that luxurious black beard to keep you warm now eh..😂😂😂😂😜

[PMRpro Ambassador in reply to Angelsmummy]

Don't be daft - I stay in until it warms up!!!

[Angelsmummy in reply to PMRpro]

Glad to hear it,we need you in one piece!💐😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Yes but you have to remember no Pred to take or disturb sleep -and lots of walking being done! -oh and wine drinking😊

[Angelsmummy in reply to DorsetLady]

You lucky bu🤬🤬🤬🤬.,Still got a bottle of Prosecco in the fridge that I didn’t drink at Xmas .probably stay there until next Xmas now!You go for it,and have one ( or 2 ) for us eh.,x😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Will do!

[PMRpro Ambassador in reply to DorsetLady]

Not Dry January then?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not a bloomin’ chance with a beer brewing SIL , 2 grandsons at present, one with a girlfriend brought up in France! 🙈

[Angelsmummy in reply to DorsetLady]

Just go for it DL,as you say,no worries about Pred,disturbed sleep,etc,make up for time lost!Think I would get ratted on a packet of wine gums now!😢😜xx

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

I am -when I’m at home and on my own I rarely drink. But make up for it when with my children -not sure where they get it from .. Oh yes I think I do! 😳

[Angelsmummy in reply to DorsetLady]

Sound like I used to be!But since having this ,barely touch it,don’t miss it,strange eh?Whether it is just trying to make sure I am doing all I can to help myself or the body just not wanting it ,don’t know but certainly ain’t going to have a drink just for the sake of it!But I used to ENJOY it!😢 .Jumping onto the 10 mg had to start from nearly 4 and 1/2,going reasonably well,but the 2 mg suggestion at 7 pm is just not holding until 2 am when I take the further 8 mg.Still slight head sensations but not as bad and some groin pain ,bearable but not wanting to get back to how it was before the increase 3 days in on new dose.Just ride it out and see if it settles?Sorry,you ARE on your hols,bit cheeky asking reslly!xx💐😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Three days is really not long enough to know if dose is enough…

I never split dose so can’t give advice that for GCA… I didn’t need to, my doses lasted full 24hrs.

[Angelsmummy in reply to DorsetLady]

It was my fault,was flaring,told by PRO to try 10 mg,so I took that asap which was about 10 pm.Next day by about 9pm ish all symptoms back ,which is why I got the suggestion by PRO to try split dose.Guess it wouldn’t hurt to just put up with all the discomfort tonight and just take the ten at my normal 2 am and see whether the 10 will be better at containing it.Also have you any idea what is the lowest dose that would protect eye?Promise,after this I will leave you alone!xxXxx💐💐😜

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Not sure I can give a number re eyes… but the inflammation would need to build up again enough to affect the ophthalmic artery.

Bit of a “how long is a piece of string” question really.

[Angelsmummy in reply to DorsetLady]

Ok DL,many thanks once again,will just put my big girl pants on tonight and take the whole 10 mg at 2 am and see what happens.As you say,might take a while to get things in check ,maybe I am expecting too much too soon.As for eye and dose to protect quite understand,guess it as what is always said on here SYMPTOMS !Sorry to be a bother just get that I have days that if anything happened with my good eye,just where would it leave me with OH? Going to brave the weather today and mooch around Tesco to get a few neceassary bits and take my mind off things.xxxHave a good evening,xx💐💐

[PMRpro Ambassador in reply to Angelsmummy]

Not sure I said split - I said ADD a few mg extra to take you back to 2am and then take the normal daily dose.

[PMRpro Ambassador in reply to DorsetLady]

Apparently they are banging on about DJ here - never thought I'd see the day!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Blimey.., never catch on here -as it’s the summer holiday season!

[PMRpro Ambassador in reply to DorsetLady]

Skiing - and apres-ski - season here. Mind you - might result in fewer Belgians sitting down to a beer and a schapps at 9.30am!! And I bet they also drive back to their accommodation ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes…

[Vikinga in reply to DorsetLady]

I agree 100% with you!

Vikinga

[Angelsmummy in reply to Vikinga]

Wow.,101,what a wonderful age!Sorry you got the dreaded GCA, so take very good care of your eyes eh?.Yes,I too am sorry that I lost the sight in one eye but it is gone and there is nothing I can do about it.Just got to be ultra careful with the remaining one even if it is a bit dodgy!Probably why I get so damn paranoid about it all,Glad your dear mum got over it in four years or so,looking forward to the time that mine waves me goodbye,it can’t come quick enough for me.Bet it is cold in Canada isnt it?Bad enough here!Keep warm,xx🌨️💨☃️💐😜

[Vikinga in reply to Angelsmummy]

Losing the sight in one eyer an eye must be terryfying but like you say, there is nothing you can do about that now and you are very careful with your good eye. DL seems to have adapted well to losing the vision in one eye, se drives and travels without any problem.

It is cold here in Canada, I try to go out only when necessary, I have osteoporosis and I am afraid of a hip fracture. Walmart sells hip protectors that reduce a fall impact and the chances of hip fractures,

I hope you wave goodbye to GCA soon!

Vikinga

[Angelsmummy in reply to Vikinga]

Sad to say I can’t drive anymore as have MD in my other eye,and cannot travel as OH is unwell .Plenty of wonderful memories of our globetrotting though.Now I am quite happy in my very large garden with OH and my animals.best wishes to you Vxxx💐😜

[PMRpro Ambassador]

"are more common after straining" - what do you mean by that? Straining on the toilet?

If so, that is something called a primary exertion headache and it commonly occurs when abdominal muscles are overtensed. What you are describing is really not typical of GCA.

healthline.com/health/diges...

I can't remember if I said before - aneuryms rarely develop quickly. You either have them from birth or they are a consquence of a long term situation - they don't happen early in GCA but may develop over years, especially if the inflammation isn't diagnosed and treated, which may be the case with LVV (large vessel vasculitis).

[Vikinga in reply to PMRpro]

Thank you PMRpro for your explanation about headaches . By straining I mean handling heavy things and also straining on the toilet. Also , great info about the development of aneurisms which do not happen early in GCA. Such clarification helps me a lot!

Thank you so much!

Vikinga

[PMRpro Ambassador in reply to Vikinga]

When lifting heavy items you should be using your abdominal muscle too - so the same thing. And you shouldn't be - straining that is!! Very bad for you!!!! If you are constipated work out why - more fibre, more water, more exercise, walking is fine.

[Vikinga in reply to PMRpro]

As always, you are right PMRpro. I realized my problem is not drinking enough water. I eat lots of fiber every day but without enough water and little exercise straining is still needed.

I will drink 2L of water per day. I hope no straining needed!

Thanks

VIKINGA

[PMRpro Ambassador in reply to Vikinga]

Fibre is wondrous - PROVIDING you dilute it enough!!!!

[Vikinga in reply to PMRpro]

I agree, chickpeas, kale, Swiss chard, avocados, sweet potatoes, blue berries, raspberries, are great. But as you say, they must be diluted, something I missed doing.

Vikinga

[Angelsmummy in reply to Vikinga]

Just saw this post…..saw something the other day and it works.,But obvs.you must keep fluids up,what you should do is sit on toilet,legs apart hip width and rest forearms on thighs.Feels ungainly but stands to reason,the wider apart your legs are,must make for an easier passage of stools ! Not a nice subject granted but if it helps!xx😜😖

[PMRpro Ambassador in reply to Angelsmummy]

A foot stool is also recommended. UK toilets are too high.

[Angelsmummy in reply to PMRpro]

Ah,you’ve seen it too?Is there ANYTHING you don’t know PRO?Should have got you on MASTERMIND,you would have made a fortune !xx😜🏅

[Vikinga in reply to PMRpro]

Thanks for the advise!

Vikinga

[123-go]

Well done to your rheumatologist for reading up on GCA. However, this is not really helping you right now and with due respect it could take some time to reach a definite conclusion, ie, do you have GCA or something else? I have read that GCA symptoms can come and go and with this in mind I do feel that multi-disciplinary involvement is required, for example, opthalmologist, neurologist…….