GCA some interesting info in large Swedish study

[Rimmy]

Hi all

There are so many well-informed people on this forum and I appreciate all the info I find here. So apologies if has been aired before but there are several interesting observations about 'ocular manifestations' in relation to GCA in this fairly recent big Swedish study synopsis including:

'Men with GCA had a higher risk than women, and GCA patients without polymyalgia rheumatica (PMR) symptoms had a higher risk than those with PMR symptoms. Living outside big cities was negatively associated with ocular manifestations in GCA patients, whereas hypertension and diabetes were associated with an increased risk of ocular manifestations'

I am wondering if higher rates of eyesight issues are also related to pollution in big cities after hearing recently that cardiovascular problems have been linked to this growing global problem but strokes and heart attacks are often not even recognised as part of it.

Other research also points out how high blood pressure and various co-morbidities can amplify vascular problems as most of us will know. Also interesting they are saying that those who DIDN'T also have PMR symptoms have a greater risk of eyesight problems ...

Anyway the link:

tandfonline.com/doi/abs/10....

Best wishes

Rimmy

[SheffieldJane]

Thank you for posting this interesting study Rimmy.

I wonder if PMR serves as a warning before GCA manifests and the treatment for PMR prevents the inflammation spreading?

I also wonder if big cities contain more stressed out people? PMR/GCA love stress. I was quickly given Atenolol for high blood pressure associated with steroid treatment too. I have a PMR diagnosis. What about you?

[Rimmy in reply to SheffieldJane]

Hi SheffieldJane

Yes PMR can certainly serve as a 'warning' - it did for me when I had some GCA symptoms which weren't really definitive and only after putting 'pieces' together I realised that was what was also 'brewing' - mainly strong pressure in face which I initially attributed to sinus and allergy and some niggly headaches in odd places. It was only when I went on a higher dose of Pred that this pain actually stopped after several weeks !! I also have finally deduced my now departed mother very likely had undiagnosed GCA for years - she was sent home with 'valium' for massive headaches in the 70's and ended up with several small strokes and partial eyesight. Now her poor health over many years makes more 'sense' to our bemused family and in a reverse way confirms my own GCA - the familial aggregation thing.

Fortunately I don't have the high BP she (and her siblings) also had which must have exacerbated things greatly. So I have only been taking Pred for 3 months (initially a lower dose for PMR and now in 3rd week of 40mg for 'uncomplicated GCA') and have no obvious side effects yet except for feeling a bit 'wired' which I don't mind most of the time and I know it is temporary. And yes stress and cities most certainly can go together - we live rural in the southern climes of OZ near the sea and the trees - great DE-stressors and fresh air !!

Kindest

Rimmy

[Tonylynn in reply to SheffieldJane]

If, at the initial diagnosis of PMR, patients were treated with the same level of prednisalone as used in GCA would this prevent GCA and if the pred was tailed slowly enough, would this reduce the incidence of flares and result in an earlier "burn out"?

No way of testing because insufficient justification for giving such a high dose if no symptoms of GCA but there must be people who had a dubious diagnosis of GCA and were given high doses of prednisalone. What, I wonder, was their experience?

Perhaps the pred dose in PMR patients is at a level that allows the inflammation to keep simmering sub clinically and hence increases the likelihood of flares, and progression to GCA in around 20% of cases.

[PMRpro Ambassador in reply to Tonylynn]

No-one has ever studied it properly. But it is unlikely if - as is held at least - the pred is only suppressing the inflammation and doesn't have any effect on the actual cause of it. It's just the cleaning cloth being used to mop up the puddle from the dripping tap - not the washer to repair it. That's why you need a high enough dose to keep it "cleared out" and if you reduce too far you let the inflammation mount up and develop a flare. The primary cause of a flare is reducing too far - experts have said that for years. Reducing too fast is less a flare than withdrawal symptoms - which always tend to be similar to the illness for which you are taking the pred in the first place.

One lady who has had PMR twice says her first journey was easier than the second -and she started on 30mg the first time, 15mg the second. But another also found both episodes totally different and she started on the same dose both times.

And there are people who developed GCA with few or no PMR symptoms originally as it was caught quickly. As they reduced from high doses they later developed PMR symptoms. One lady had GCA first and was successfully off pred after just over 2 years after a fairly rocky rise and high doses at first. Four years down the line she has now developed PMR.

[PMRpro Ambassador]

Like SJ I'd assume that PMR serves as a warning and patients are often more aware of the signs of GCA. The local rheumatologist I saw here was of the opinion that 15mg is enough to manage most cases of GCA provided there are no overt visual symptoms. The high doses are used to try to avert the risk of blindness by reducing the inflammation and swelling quickly. You can't really experiment - the potential damage is so devastating it would not be ethical. That is also why it is so difficult to trial new drug options - it must always be done alongside pred.

But are those of us with unrecognised GCA amongst the ones who struggle to reduce the dose for PMR?

[Rimmy in reply to PMRpro]

This GCA or 'not' is really complicated isn't it - as I said above I had a PMR diagnosis first and had months of struggling with all the typical symptoms - Pred worked in 4 hours leaving me feeling almost normal. I was on a taper down from quite a high initial dose but got to 16mg and started having sinus or facial pain/pressure and some irritating 'new' headaches. Nothing really bad enough to make me think GCA at first but things seemed to be getting worse and no hope of a biopsy to show anything after several weeks on Pred and my ESR and CRPs had come into 'normal' ranges (altho they weren't that high when I was at my worst with PMR). I was as I have mentioned elsewhere getting some small 'blue spots' occasionally in my vision and I am still waiting to see an ophthalmologist in a couple of weeks. But adding everything up - my mum's possible undiagnosed GCA and partial blindness, my painful face and headaches I decided to up my Pred dose to the BSR 'uncomplicated GCA' clinical guidelines level as figured it wasn't worth taking the risk. Luckily I had no other symptoms and no blurring or other visual problems. So far in 3rd week of 40mg and currently have no symptoms at all - but will likely stay on this dose until my eyes have been checked thoroughly.

Best wishes

Rimmy

[SnazzyD in reply to Rimmy]

Hi, My GCA blew up over 24 hours with a few niggles over months only with hindsight. I had had some 'blue spots' when cycling hard that week. I had no PMR. My long and peripheral vision were going just before Pred was given in A&E. My inflammatory markers were unremarkable. I had a thorough eye test (vessels, pressures, peripheral, colour etc) on Monday and it was all normal; I had got it in time. Therefore, even if yours are ok on checking I would caution assuming Pred can go down as the inflammation that will lead to further damage may still be there, especially as you were having some visual symptoms. Advice might be needed as to how to proceed.

[Rimmy in reply to SnazzyD]

Hi Snazzy

Many thanks that sure is a valuable cautionary tale - there are certainly many variables and ongoing damaging inflammation a major one !!

I realise now how insidious GCA can be and for those of us who get the less obvious symptoms we are in many ways at greater risk. I will certainly not taper from the relatively high dose I am taking until there is more certainty about possible consequences. Thanks again

Best

Rimmy

[Hindags in reply to Rimmy]

Going up on Pred on your own, understanding your own history and acting on your own behalf to be safer. Congratulations. I know how I felt being told to go back up to 20mg again from 14 when my markers went up. No symptoms to speak of but the numbers were going in the wrong direction. The markers responded very quickly and I'm heading down on the Pred again, but if I my markers rise again at @ 14 mg I don't know what will be next.....my Rheumy is loathe to try the very slow taper because of the total Pred dosage is higher. But in the end it might be lower than yoyoing.

Deep down I suspect I have GCA, without GCA symptoms. My head feels clearer and cooler since I've been on Prednisone. Don't have any other explanation for that. I hope I won't go into denial if/when symptoms of GCA present themselves and that I'll have the wisdom and courage to act as you have.

[PMRpro Ambassador in reply to Hindags]

If it works it is neither slow nor more risky because of the overall total dose. In fact, I'd say it might put you 1 month behind on that but you are far less likely to have a flare. And as soon as you have a flare and have to go back a few months in terms of dose, all that rush to get to a lower dose was for nothing.

[Hindags in reply to PMRpro]

I agree with you. My plan for now is to follow Rheumy's plan, reducing 1mg per week. But at 15 I will make a case for the very slow taper. I got into trouble at 14 last time.

I'm in no hurry to reduce right now anyway. Having company coming for a family celebration on May 20. It will amp up my activity level. I'll need to be very careful.

Went with Hubby to an opera today. An hour ride each way, searching for a place to grab a bite, a three hour performance in a poorly ventilated venue. Did not feel so good by the time I got home. Tired. Better after dinner but I consider it a warning. Spoons!

[Rimmy in reply to Hindags]

Thanks for your very kind comments. I think just even just a 'suspicion' you may have GCA is worth keeping a close 'eye' on. Hopefully this will never happen but as other very informed people on this forum have discussed taking extra Pred for a while -if you or your Rheumy think you need to - is not necessarily the 'worst' thing that can happen. Not everyone gets all the nasty side effects and from what I have read so far many of these can be at least partially controlled.

Best wishes

Rimmy

[Tj2017 in reply to Hindags]

Don't minimize what you believe are symptoms. As I was recently diagnosed with GCA I realized I did at a great disservice to myself. I experienced heat on my right side of my head as well as discomfort when the side of my head relaxed against something as soft as a pillow. I also experienced brain fuzziness. Keep advocating and take care. Remember the doctors only hear the symptoms. They have not had your experience.

[Rimmy in reply to Tj2017]

Hi Tj2017

Completely agree about symptoms and the validity of our personal experience - after all it is OUR eyesight we could lose - as well as other dreadful possible consequences. Like yourself and (ironically) several others I have read about on this forum - I have realised mine weren't the ones on the very 'typical' list - which doesn't really help when talking with doctors. Mind you I also felt uncertain myself for quite a long time about whether some of them were about GCA or 'something else' - especially as initial ones coincided with an annual allergy response I have had over the last couple of years. But I also drew the conclusion if I had BOTH inflamed sinuses and brewing GCA they could and likely would together be making my face even more painful than usual - exacerbating 'each other'. So far the high (GCA) dose of Pred I have been taking for nearly a month now seems to have resolved this as well as the occasional tiny blue spots I was having briefly in my vision - and about which I am still waiting to see an opthalmologist. I will feel better though when my eyesight has been looked at though and in the meantime I do realise I need to be on the ball if anything else of sinister quality arises. I also now carry extra a large dose of Pred on me to take straight away in case of emergencies.

I am wondering however if any of us with GCA and even 'just' PMR - can ever afford to be 'laid back' about the possibility of an extreme event - although after some time on higher doses of Pred I know there is agreement that major occular issues are not as likely to occur .... but anyway like many other personally experienced aspects of PMR & GCA things are obviously not always so clear cut.

Many thanks

[raymck in reply to Rimmy]

Hi Rimmy, As an ex GCA sight loss pred taker, I am glad you are on quite a high dose. This due to your mention of ink spots as I called them which led to one side losing vision in 3 days!! Then put in hospital on IV high dose for 4 days to save my other eye which worked thank goodness. Try to speed up your appointment if you can is all I can say and good luck.

[Ronnie101 in reply to raymck]

Do you recall what your blood markers were?

[raymck in reply to Ronnie101]

No. Mine was an emergency admission with a positive biopsy straight away. Blood markers were only checked many weeks later when reducing preds from a max of 80mg infused to around 30 to see if further reduction was ok. It was normal so I went fairly quickly to zero in a year.

[Ronnie101 in reply to raymck]

30 to zero in a year is very quick! Did you experience any symptoms during that time?

[raymck in reply to Ronnie101]

Just the usual side-effects which I was told to expect like stiffness in joints (still ongoing). Nothing unbearable but uticaria lingers on too. Other factors tend to take over like hypertension so it all gets a bit complicated?

[Rimmy in reply to raymck]

Thanks I do appreciate your insights and concerns. I have been taking Pred for 3 months now with nearly a month at a GCA level 'high' dose which has pretty well left me symptom free - but if anything untoward happens before I get to see a visiting opthalmologist I'd go to A&E like a shot - this is the best I could do here for immediate treatment in a rural/regional area.

Thanks again

[Rimmy in reply to Rimmy]

Attention raymck

Sorry this last response from me was meant to be addressed to you Raymck !!

[Hindags]

I carry with me an emergency dose of 80 mugs of Pred. And one 81mg aspirin, per my Rheumy. Just in case.....

But, a few weeks ago I had some wine. It went to my head and I went to bed for a few hours. I awoke in time to take my meds. But I realized that my husband wouldn't have known to wake me to take the prednisone. Nor does he know what dose I'm taking or where I keep the pill dispenser. I have remedied that.

[Rimmy in reply to Hindags]

All sounds very 'wise' to me - and yes I update my partner about my dosage level etc - or else how could we opt out with a glass or two occasionally ... not often these days though as I don't seem to have 'old' capacity - but just as well I guess

[PMRpro Ambassador in reply to Hindags]

Do check the use-by date on the pack - and use it up and replace it in time! Sometimes pred can have a very short remaining shelf-life - and one lady checked her brand new prescription to find it was already out of date!

[Hindags in reply to PMRpro]

Thanks for the tip. Will do.

[altywhite]

Hi Rimmy, this is really interesting. I have had deteriorating eyesight for over a year now and had 3 pairs of specs in 18months. Long story short..I was referred for an MRI scan to check for "nerve damage behind the eyes". I had the scan 4 weeks ago and have had no results as yet. I've tried to call the secretary but she never appears to be in...my next call will be to the PALS department. In the meantime I have resorted to contact lenses because the prescription can be changed easily without having to pay out £600 for specs each time!! I also now have some single vision glasses for distance and am using my old varifocal glasses as reading glasses. Apart from getting very short sighted I had the occasional stabbing pain in my right eye, lots of floaters and 'cloudy eyes' and trouble focusing if I moved my head too quickly!!! Oh the joys of our conditions!! I have temporal arteritis by the way.

[Rimmy in reply to altywhite]

Hi altywhite

Yes this different glasses and contacts thing can be very frustrating - fortunately I have just one pair of multi-focal glasses which I seem to be constantly cleaning and which never seem as good as my 'older' ones. I did notice however that they gave me a 'weaker' prescription with my most recent ones than my earlier ones. Has my eyesight IMPROVED then !!?? I asked them to no response. I also find multi-focals never quite seem to get gradations 'right' so that I am always sliding them up and down my nose for best effect. But with GCA hovering I have a whole new appreciation of the value of my eyes - and I think the subject(s) of PMR in relation to GCA as well as the emergence of GCA on its 'own' need to be aired as widely as possible especially in light of possibilities of 'prevention' of extreme events - and hopefully one day there will be some more helpful research outcomes - although there are clear difficulties as PMRpro says.

Best

Rimmy

[PMRpro Ambassador in reply to Rimmy]

It's a lot cheaper to do what I have done: I have a pair of cheap "computer" single distance specs which are slid up and down my nose as required. They also now serve as reading specs if required - small print books, no need for the kindle, I'm so short sighted... I had very useful distance lenses but a new strange optician (had to see her, my only specs were mislaid) insisted on a stronger prescription - the specs are nice but not as useful as the older ones.

But the other day I realised while sitting at the computer that if I looked across to the village I could see extremely clearly. What's THAT about then?

[Rimmy in reply to PMRpro]

Sometimes I just mutter to myself - EVERYTHING is SUCH an inexact 'science' .... !!! - makes me feel better anyway (LOL)