Having had my first attack of the dreaded GCA last week, and been given 40mg a day of pred by my GP, I visited the opthalmist for a check on my vision.
All clear, but a lucky escape, she says.
The opthalmist said that from the symptoms and early warning signs I have GCA in my left hand side, and now that the pred had had its affect (as per the PMRpro on this site told me), I am having a reprieve. However, there is a 50% chance of it happenening again and it may happen on either side. Shrieks, 50%! That is quite a high chance, ugh.
I was taken off the 40mg dose after the five days, as my ESR showed a normal level. The CRP was never measured, something which I read on this forum, usually is. Hmmmm. I have a plan in place, but it does not involve the GP. D
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daphne_retired
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If the ophalmist says you "had GCA" - then you need to be on pred for a lot longer than 5 days - the ESR and CRP are normal in 1 in 5 or so of patients. The giant cells take much more than a few days to go and most doctors would have you on pred for up to a couple of years at least. Research published last year showed that the inflammation is still present after 6 MONTHS of high dose pred even though the ESR and CRP are normal.
Here is a list of links to sites where you will find medically approved info - especially the first. Get the BSR Guidelines and the paper from the Bristol group and take them to your doctor or the ophthalmist - and request more pred in line with their recommendations.
rcpe.ac.uk/sites/default/fi... (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).
pmrandgca.org.uk/research-a... This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ.
Thank you for all this, and I will be studying them hard this evening when I have finished my housework, which as of this week I can do better than for ten years at least!!!
One more question: is there any knowledge as to the effect of that dose (40mg/day for five days) wearing off. In other words, how long before I am back to square one. I finished my course on Thursday. I am free of pain as of this moment, just a lsight pain/discomfort in my temple. None of the usual inflam that is background. Also very mobile for one my age. I am afraid to confront the GP, I do not want to appear paranoid. However, I will plcuk up courage and do as you ask.
Possibly very very quickly if it really is GCA. Normally you would be kept at 40mg for a month and then reduce to 20mg over a few months. It depends how swollen the lining of the arteries is and where the giant cells are.
I've never come across someone given 40mg for 5 days for GCA so I don't know what would happen - but if any symptoms come back head for A&E/ER!
I am going to talk to another surgery on Monday and try and get on the pred again. The way forward is to get the biopsy done, from what I have learned. Then there is no doubt either way. I have an emergency plan with the A&E on the backburner, but without your help I would not be any the wiser on all this, so thanks again....I feel well except for a slight temporal pain, and feeling well is not what I am used to...strange.
Not entirely as simple as that I'm afraid Daphne: if the biopsy is positive, yes, it is a definitive answer, it is 100% GCA. Unfortunately, the giant cells do not appear regularly through the tissue, they can skip areas. If they are not present in the piece of artery taken for the biopsy but present somewhere else you could have GCA but the test would appear negative or (better) inconclusive. It is probably worth having the biopsy done, there is about a 50/50 chance it will be positive and no-one will argue again. But it being negative doesn't necessarily mean you haven't got GCA - a good doctor makes the decision on the basis of the symptoms.
Some larger hospitals can do an ultrasound of the artery - but not everywhere have trained staff to do it.
Whichever what way - I hope you remain well and it doesn't come back. Do let us know what transpires.
I have GCA/PMR and I was put on 60mg of Prednisone, it took me a year to get down to 20mg. I am now at eleven mg after over a year and one half. My Rheumatologist told me it could take "five or six years" to go into remission. PMRpro's advice is solid, go to the A&E fast if the symptoms return.
When I saw Consultant Ophthalmologist at hospital a fortnight after being diagnosed, and when he reduced Pred from 80mg to 60mg daily, his words were along the lines that I would need to be on Pred for at least two years to preserve the sight in my remaining eye. And possibly on a low "maintenance " dose for life.
On another occasion I saw a different Ophthalmologist when I was on about 17.5 or 15mg, and said I had a slight headache, his reaction was go back up to 25mg and stay there until the symptoms go, and then start reducing again.
The message is, don't get paranoid, but you cannot be too careful, this is YOUR sight.
I think I can guess what your plan is , good luck. DorsetLady
Hi there, enjoying the sun? PMR pro has given me some reading to do. It seems mine should be gradually reduced as well. I am going to ask the PMRpro if there is any knowledge as to the effect of that dose (40mg/day for five days) wearing off. In other words, how long before I am back to square one. I finished my course on Thursday. I am free of pain as of this moment, just a lsight pain/discomfort in my temple. None of the usual inflam that is background.
Hi Daphne, enjoying sun, been to coast this morning to indulge myself with my fix of the sea etc.
What you need to realise is that Pred. does not cure GCA/PMR it only reduces the inflammation in your blood vessels. There is no cure for GCA is has to run it own course, but the symptoms can be controlled. Unfortunately some doctors think that a short, sharp course of steroids cure it, they might do in some illnesses, but not GCA/PMR.
Suggest you read Kate Gilbert's-book - PMR & GCA - A Survival Guide. Available from Amazon. This will give you a good insight into these illnesses. DorsetLady
I have had a lot of good advice from people on this site, especially from PMRpro, and know that your case of GCA is similar to mine.
I had no GCA symptoms, and by the time I was put on Prednisolone it was too late to do anything about the sight in my left eye.
I was on 60 mgs a day from the onset on 13 Oct 2017 for a good 6 weeks, then reduced to 40 mgs by my Rheumatologist for 4 weeks, then 30 mgs for 2 weeks, and now from 30 Dec 2017 I am on 20 mgs a day, with the plan to reduce to 17/5 mgs a day from 20 Jan 2018, and then 15 mgs from 10 Feb.
This plan has been put in place, with now not seeing the Rheumatologist from mid December to my review in mid-Feb, so having no further blood tests, yet reducing the steroid dose 3 times during that time.
I am concerned about this - especially no further blood tests or consultation over the 2 months. PMR pro has suggested I consult a Rheumatologist who specialises in this area - can you tell me what your dosage of steroids has been and for how long over the first 4 months of your treatment, and how long between reviews with your Rheumatologist and if you had a blood test each time before your Prednisolone dosage was reduced.
Sorry haven’t replied before, but been criss-crossing NZ North Island over last few days.
See below for my reductions (did it for somebody else).
I reduced roughly at monthly interval, apart from initial 80-60mg, but always had a blood test beforehand and if no return of symptoms.
My GCA was diagnosed by Ophthamologist after loss of sight, only saw Rheumy once 6 months after dx - he was happy for GP to treat (we had already sorted a plan!)
I changed surgeries when I was at 15mg and then bloods were tested about every couple of months, and I was virtually given carte blanche to taper as I saw fit. As new GP said - “you know your illness and body better than anyone, just call me if you need me”.
There were some occasions when I stayed on dose for longer as you can see, but I never had any real problems.
Hope it helps,
Start dose - April 2012
80mg - 2 weeks
60mg - 8 weeks
55mg - 2 weeks
50mg - 3 weeks
40mg - 2 weeks
30mg - 3 weeks
25mg - 4 weeks
20mg - 5 weeks
17.5mg - 4 weeks
15mg - 6 weeks (Xmas period)
2013
14mg - 3 weeks
13mg - 4 weeks (1st 4 days @ 13.5mg)
12mg - 10 weeks (1st 4 days @ 12.5mg)
20mg - 2 weeks***
17.5mg - 2 weeks***
15mg - 2 weeks ***
17.5mg - 4 weeks***
25mg - 3 weeks ***
20mg - 4 weeks (slow taper)
15mg - 6 weeks (slow taper) - changed surgeries
14mg - 2 weeks
13mg - 9 weeks (Xmas)
2014
12mg - 10 weeks (slow taper from now on)
10mg - 3 weeks
9mg - 6 weeks
8mg - 6 weeks
7mg - 6 weeks
6.5mg - 6 weeks
6mg - 12 weeks (visit to NZ)
2015
5.5mg - 6 weeks
5mg - 8 weeks
4.5mg - 6 weeks
4mg - 10 weeks (unexplained neck/back pain)
3.5mg - 5 weeks
3mg - 9 weeks
2.5mg - 6 weeks
2016
2mg - 5 weeks
1.5mg - 6 weeks
1mg - 4 weeks
0.5mg - 16 weeks (couple of false starts, plus holiday)
Zero
***Raised ESR, due to stress over hubby being very ill, liver cancer diagnosed and subsequently dying. But no GCA flare.
Thanks for your reply - you sound to be having a good time over there!
Did you not have any warning signs of your GCA before you lost sight? Have you lost sight in just your left eye like me? I had none of the GCA signs at all - first thing I knew something was wrong was when I noticed like a cloud (shadow) in my vision in the top left part of my left eye. Had fellow PMR / GCA sufferers on the sight tell me that my doctor dealing with my PMR (also started in 2012 like in your case0 that he should have told me more about a GCA risk and more about what to look out for, but he never mentioned it. Also, that the optician that noticed something wrong in my left eye scan, that I should have been given a letter and told to go straight to A & E - the 2 day gap between the Wednesday when I saw the optician and being asked to go to the eye clinic at the hospital, by the hospital, would have made all the difference, as I had no sight loss on the Wednesday afternoon, but that had all changed by the Friday when my optic nerves had become inflamed.
The problem is with GCA being so rare that doctors and especially opticians do not know enough about it. When I went back to the opticians for a sight test for some glasses to help my right (good) eye, due to steroid induced blurred vision, the optician I then saw - a Scottish lady in her 40s - new all about GCA. The earlier one had been in her early 20s maybe, and not experienced. I can't help thinking if I had seen the Scottish lady the first time she might have sent me to A & E and things might have turned out so different.
Did you lose your sight gradually or quickly, like in my case? How much sight have you lost? What are you able to see? Is your sight still 1000% okay in your good eye?How did you first feel? Did you have a lot of mood swings?
Something I have notice about people with GCA on the sight, is that it nearly always seems to be the person's left eye that has been affected first - wonder why that is. Maybe you have noticed that also.
Your steroid dosage reduction, and with blood tests before hand, seems a lot more sensible than in my case, with big reductions over shorter periods of time, and without a blood test before a reduction - born out by the events of the weekend, when I was lucky that I got a warning with a strong pain at the back of my good right eye in the early hours of yesterday, with my subsequent visit to A & E yesterday morning ending with the eye doctor putting my 20 mgs Prednisolone dose back up to 60 mgs for the next 3 days, before going back to see her this coming Wednesday morning for a further eye examination and further steroid review plan. I am going to mention the fact that I have big steroid reductions without blood tests, and that is putting my sight in danger with being someone who had no initial GCA warning signs.
Have you now adjusted to your sight position? How long did it take you to accept it? Did you feel anger at first? (Why me etc). I am interested to hear your experiences with it.
Blurring from the bottom of eye moving upward over 3 days
Light comes in right hand side of eye, cannot see anything in detail
Good eye - cataract replacement (steroid induced) but all okay
Initial feeling of shock mingled with relief that other eye okay. Annoyed with GP surgery for missing significant markers - my son was furious!
Mood swings more from Pred than anything else, but not significant
Very rarely think about it now, it is what it is, but it’s a bit annoying at times. But it doesn’t stop me doing what I want. Arthritis is more troublesome!
However it has made me determined to try and prevent it happening to others, unfortunately it’s not that easy!
I also had a problem in one side, the left. Only the left artery showed a diagnostic biopsy for GCA. I now suspect that it's going through my RH side (from analyzing various small pains in the head arteries [leg and hand arteries as well]). I have (possibly an unrealistic hope) that when it gets through with the RH side, then it will remit. However, I do have crossover symptoms on the LH side. Oh well.
This is an interesting post. At the moment, with me, it is only in the left hand side of my head, but for three or four years now I have coped with burning in my left foot and toes, slightly in my right. It is clear to me that this is caused by the blood flow to the parts of the feet and toes that burn. I am checking regularly for signs of gangrene.....GP's not interested as usual. Physiotherapist, who is brilliant in my view, has helped a lot.
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