Giant Cell Arteritis and Prednisone

[Perilon]

Hi, I'm new here - my name is Roger Hall, I am 75 and live in Kingston, Ontario, Canada.

In February 2020 I came down with a terrible headache , chills and fever, and sensitive scalp. I treated it as flu, spent most of the next three weeks in bed, no appetite, sleeping. Eventually decided to visit doctor who gave me better medication for the headache, but that was it.

Around 4:00pm the next day I lost sight in my left eye - twice for about 30 seconds each time. When it happened again around 9:30 pm, my wife whisked me off to the hospital. Only a very brief examination needed and was told that I most likely had Giant Cell Temporal Arteritis . Had a cat scan, was given a 5 mg initial dose of Prednisone and appointment for specialist the next day. . . attended examination, appointment following week for biopsy, and given prescription for 80 mg Prednisone daily.

Since then I had biopsy – confirmed diagnosis. COVID-19 prevented my scheduled hospital consults, but had phone consults, reducing dose approx. every 2/3 weeks from 80 – 60 – 50 – 45 – 40 and now I’m on 35 mg daily.

Had many side effects of the Prednisone – swollen ankles, dry mouth, bad taste in mouth, loss of muscle mass, loss of weight, blurring vision (perhaps cataracts) , loss of hair, courser skin, no strength, no energy – and ever changing!

So I’m here to glean from others’ past experiences to help know what to expect!!

Thanks for having me!

[PMRpro Ambassador]

Hi - and welcome! I don't think we have many men with GCA on the forum!

Well done your wife - and well done the ED except is that a typo? They gave you 5mg pred for suspected GCA? 50mg surely????

There may be some jealous people - quick and efficient diagnosis of GCA and weight LOSS on pred! Best not mention that too loudly - most people want to lose what they gained on pred ...

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

You don’t mention sight issues now - are eyes ok?

As PMRpro says well done your wife.

Here’s a bit of info written for new patients - have a look through and let your wife as well if she’s interested - it covers both PMR and GCA - the starting doses vary considerably, but the journey with steroids are similar.

healthunlocked.com/pmrgcauk...

Any questions any time, there’s always someone on here who will answer -

[Perilon in reply to DorsetLady]

Hi Dorset Lady

Thank you and other members for the welcome - which I must admit has been very heartening and encouraging.

Right now my eyes both have vision, although I do get a large white dot randomly, particularly against a black background. The left eye, which was the one that lost vision briefly, is definitely weaker and my overall vision is pretty blurred at times. My wife suspects that I may have cataracts although with COVID-19 I am, as yet, unable to attend an optician.

My wife is an ex-nurse, and has that "O-so practical" side, and probably saved my vision.

Thank you for the link - yes both my wife and I have read it through several times.

A ton of great information.

Best greetings from Canada - and everyone keep safe - we have enough to cope with without COVID!

Roger

[DorsetLady PMRGCAuk volunteer in reply to Perilon]

Hi Roger

High doses of Pred can make your eyes a bit blurred - which doesn’t help when you’re worried about them anyway. Plus you may well find that if you already have the start of cataracts the Pred can accelerate their deterioration.

Please make sure you always wear sunglasses when outside (even in winter sun) and if you have spectacles with transition lenses, buy the best you can afford. That will protect you against the cataracts getting worse, and as your eyes may be weaker than normal they need all the protection you can give them.

If you’re not under the hospital for eye checks, make regular appointments with local optometrist. I still have mine checked every year - am overdue because of C-19, but will be there as soon as possible.

Take care - and don’t forget we’re always about if needed

[SheffieldJane]

Hello and welcome Roger! I was diagnosed with GCA 4 weeks ago, so I can really identify with how you are feeling. I am so glad that your sight has been saved and you have such a quick witted wife! Your treatment does sound text book so far.

There is a wealth of experience on here to draw upon and a lot of knowledge. It makes a big difference to the experience. I have found dry mouth pastilles a big help, particularly at night. I just surrender to the deathly fatigue, we are quite ill after all. I have cataracts that will be dealt with after they are doing the operations again ( I have heard really positive things about the outcomes). Have you missed out on the voracious appetite? I am a complete food monster. Stay with us!

[pmrgcavictim]

Hello and welcome Roger, from one of the few men on this wonderful forum. I started my PMR and GCA journey almost 2 years ago. I can't help much with the side effects, I seem to have gotten off quite lightly in that respect. Aching thighs and odd vision, that's about it. Here's hoping you have an easy journey ahead of you. I read everything on here, so much valuable information, and help, more than you will get from the medical lot, unless you find one of the rare good ones. Trevor.

[FnF36]

Hello Roger from another gentleman (just 69).

My GCA journey began with headaches, jaw aches and weight loss. GCA was confirmed in November 2019 when 40mg Prednisolone daily was prescribed.

Following three episodes of partial sight loss in my right eye during one weekend in early December, pred was increased to 60mg. Between January and March pred reduced to 50>40>30>25 where I am content to remain for the time being at least.

The only features you describe that I have not experienced since diagnosis and commencing the pred regime are swollen ankles and weight loss (I wish!). I find sleeping at night rather difficult but often easier during afternoons! The unpredictability of fatigue and lack of energy, and the realisation of how debilitating GCA is, have been the toughest challenges. Coming to terms with resting when my body tells me to rather than when I tell it to rest is a bit of a struggle. And as you say, it is ever changing.

This site and all the great people who contribute with their knowledge, experience and wisdom have been a blessing in helping me understand GCA and ways of coping with its impact. As has been said, read everything and stay with us!

I wish you wellness and safety.

[Ding65]

Hi Roger, I’m new here too.

I was diagnosed with GCA in February and your experience fits mine almost exactly except that the severe headaches had already put me into hospital and I had difficulty opening my mouth.

On the brink of discharge, I lost sight in my right eye for about 30 seconds. So lucky I was in hospital. Had I been home, I think I would have convinced myself that I had imagined it and waited to see if it happened again.

I was given 80 mgs of prednisone intravenously and a biopsy confirming GCA. Finally discharged and lost my sight for about the same time span and went back to hospital. My blood tests showed inflammation levels to be normal so I’m a bit confused about why I lost my sight again at that time.

I’ve since developed numbness from the knees down and my feet burn at night. My right forefinger and little finger feel numb. I’ve experienced symptoms like this on and off over a period of several years but it is quite intense now. Test results as recently as 2018 showed nothing so not sure if this is part of GCA?

I also managed to break a tooth during lockdown and had it removed in hospital. Since then, the side of my face and half of my bottom lip are numb. I know I should probably go back to the hospital dentist but he was a bit rough so I’m not keen.

Since then, I continue with withdraw from Prednisone and am down to 30mgs.

From time to time, I experience occasional prickling over my scalp. I also have a dry mouth, bad taste, often so tired and the dreadful moon face.

I’m very glad to have found this forum. A wealth of knowledge and kind, sound advice - thank you.

[PMRpro Ambassador in reply to Ding65]

My feeling is that for someone who experienced sight loss to have reduced from 80 to 30mg between February and now is a bit too fast.

When you went back into hospital after the second visual loss did they rule out a TIA as well?

[Ding65 in reply to PMRpro]

Hi there...I was discharged from hospital on a much lesser dose..brain fog..can’t remember what. I was initially reducing at 5mg per week but my scalp started to prickle so I slowed it down to 2.5. There was no investigation for a TIA.

[Dubler]

You could’ve gone permanently blind at any point in there before the high dose of pred so thank the Lord you didn’t. It will be a bumpy ride. You pretty much go by your esr and crp bloodwork to keep check of your inflammation. High inflammation equals blindness possibilities. I have been on preds for 10 months. I was tapering down to 9 mg and my esr shot up to 106 for some reason. Should be 20-30 or below. My crp was 2.6 and should be 1 or below so now I am back up to 30 mg. Having to do an ultrasound of my head Monday. I was so proud of that 9mg. I’m learning to be patient. The dr said I may have to go to Actemra since I’m having trouble

[PMRpro Ambassador in reply to Dubler]

In some people the ESR and CRP do not always show an increase in inflammation while they are still on pred - symptoms ALWAYS trump blood markers.

It isn;t uncommon for doctors to overreact to a rise in CRP - a single high result without any return of symptoms shouldn't result in a kneejerk increase in pred dose and the first attempt should be a smaller increase - to 15 or 20mg in your case. And the trend is important - many things can cause increased ESR or CRP as they are very non-specific, testing the following week can show a lot and save all that extra pred.

[Ding65 in reply to PMRpro]

Thank you for your reply. Does it matter if they only test CRP? For some reason, testIng for both here doesn’t happen. At the moment, I am being tested monthly - should it be more often than that?

[PMRpro Ambassador in reply to Ding65]

It seems to have been decided that ESR is not meaningful and they test it far less. That is true in some respects as it is so non-specific that many things will cause it to rise. In fact, it has been found that PMR and GCA are disorders where it is meaningful when tested regularly so you can follow the trends. Unfortunately many doctors don't understand what "normal range" means - it is the range of readings that will be found in 95% of the population, not the range of readings that is OK for one person. My personal normal ESR level is in low single figures, for a couple of months during a major flare it bumbled along at 16-18 - well within the "normal range" which is up to 20 but obviously very raised for me. But no-one remarked on it. My CRP has only once been out of range - on a day where I had a severe episode of atrial fibrillation. A week later it was back to the usual level. A chest infection will also sent the CRP up, sometimes to very high levels.

[Ding65 in reply to Dubler]

Thank you for replying to me. Yes, I’m very lucky. Through this forum, I’m gradually educating myself. It is definitely a lesson in patience. Good luck with your ultrasound.

[Louisa1840]

Hi Roger,

I only have PMR fortunately but I do admire your wife for her quick actions - our sight is so precious!

I am replying out of historical interest as we live in Kingston, Tasmania (Australia). We run a business called Live History and we enact historical dramas. We have often thought about doing something about your Patriots who sailed from Kingston, Ontario to Kingston here.

PMR has cut my gib a little and I now try to adjust any dramatic activity to my energy levels.

All the best for your health and its outcomes. You will find this forum invaluable on every level. No question is silly! Ask away and we are here to help you.