This is a first for me but having read your letters and discussions I felt it would be a help to be able to be in touch with others living in this nightmare. I was first diagnosed with GCA and Polymyalgia in February 2016. I gradually went from 60mg Prednisolone down to 3mg November 2017. I felt reasonable on 5mg but my rheumatologist wanted me to reduce to 3mg. Two weeks ago I went to my GP with a flashing pain over my eyes, headaches and feeling like flu was coming. He suggested it might be a migraine even though I reminded him of the GCA. 10 days ago I had a big relapse, double vision, pain over eyes, down side of my face, back of my head and down shoulders. Now I have distorted vision and a lot of pain. I took 60mg of prednisolone on the Saturday as knew it was back before I went to A&E. They said to reduce it to 30mg next day. I saw a GP on the Monday she just referred me back to the Ophthalmology Dept at the hospital. I was discharged from there summer of 2017. The left eye which had been affected with the first bout of Giant Cell had returned to a normal reading. Does anyone know how long the distortion will last. I am trying to keep my dog care business going but it does get tough. I have had an MRI scan and blood tests and having a Doppler Carotid Artery Ultrasound on both in neck in two days. Also an appointment with the Ophthalmology department tomorrow. The rheumatologist thinks there may be more going on?. I suppose I will see him as soon as all the scans have been collected and analysed. Like you all wound up, tired and struggling. I am on blood thinners this time which seem to keep some of the bloated tum down. Reading about complications like Aortic Anurism is a little worrying. Has anyone had double vision and distortions in the eyes?. How long did it last?. Charlie 789
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Charlie789
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Firstly, as unfortunately you’ve found out the hard way much too fast a reduction first time around..but you know that.
Secondly, your GP wants a good telling off..his first thought should have been a GCA relapse.
Thirdly, the A&E team should have left you on 60mg for a bit longer, really until you’d seen Ophthalmologist- as a matter of interest did you see one in A&E ?
Fourthly, if your symptoms are all head related then that usually (but not exclusively) means the GCA has gone up into your head rather than down to your torso - although you should have chest X-rays etc to check. Doesn’t always work that way - I never had one in my 5&half years of GCA!
Fifth, glad to hear your left eye is back to normal, the distortion may be due to GCA, maybe Pred, or both and difficult to say how long it will last. Mine was a few weeks, but as I’d lost the sight in right eye it was an added complication! Hopefully the Ophthamology appointment will shed some light on that.
Hello and thank you for your very knowledgeable reply. You sound as if you have had a much worse time than me. Sorry to read you have lost the sight in your right eye, not GCA I assume.
My left eye had returned to normal after the the first period of double vision and distortion caused by the GCA but then seemed to go back when this one hit. The double vision has now gone and the eye sight much clearer. Another couple of days should see a big difference. At the ophthalmologist clinic today I had lots of eye tests and am now reassured that there is no permanent damage to the nerve or retina. They do not want to see me again unless there is deterioration.
I have the Doppler ultrasound in the morning and will see the consultant rheumatologist after they have gathered the blood tests, MRI etc together. Think he wants to make sure there isn't anything else going on.
I have never been offered an x-Ray of my torso.
We do have a history of strokes and heart attacks in the family so one is always concerned.
With the pain from the Polymyalgia it is difficult to know which one is causing the back and shoulder pain.
From reading all your helpful replies it seems to affect each person differently. One thing we do all have in common is the dealing with the unknown and the fear of an episode of Giant Cell and what the outcome might be if it is not dealt efficiently.
Yes my sight loss was due to GCA - that’s how I knew I’d got it!
Because my left shoulder was always the worse my GP misdiagnosed the problem as a frozen shoulder, and treated it as such. Despite the fact it went on for so long aside the fatigue (at least 15 months) then followed by classic GCA head pains she never joined up the dots!
Eventually, my eye became blurred, and in the space of 4 days went from being partially affected to the whole eye. A weekend visit to A&E and it was diagnosed and treated within the hour. At that time time the Ophthamologist wasn’t sure the other eye could be saved, but fortunately it was. But very scary two weeks until that was confirmed!
I'm so sorry you lost the sight due to the GCA, it is scary as the discrepancies in correct diagnosing by the GPs seems to be wide spread. Unless one is lucky enough to find a doctor who has witnessed the disease I would now say, it probably would not be picked up. For the senior GP at my practice to dismiss a relapse in under two years and say "probably a migraine" says it all. How lucky I was two years ago to get an appointment with a locum GP who had witnessed a patient loosing his sigh with GCA. It's such a lottery. Like you my left side and shoulder is my worst side. The awful pain in the left shoulder is indescribable and returned when the steriods were decrease down to 3mg. In future I would avoid the GP's and instead go straight back to the hospital for advice. I has Polymyalgia for well over a year before the Giant Cell but it was never diagnosed. It was such a relief when it was all joined up I then knew why I felt so unwell
Hi Charlie and welcome! You really have had a baptism of fire haven’t you with some mismanagement along the way! As ever the lovely DorsetLady has picked up all the important points and shared her wisdom. You must be feeling pretty frightened and not able to quite trust your medics. This kind of stress really compounds everything I find. Where in the country are you? It maybe that you would do well to be in the hands of a Rheumatologist who is both expert in and interested in these conditions. There are a number that we are aware of. Getting such a one ( Dr Matthieson in Leeds) transformed my experience of PMR and gave me access to the appropriated tests for PMR’s more dangerous cousins and put my mind at rest quickly. Wishing you well. Stick with us, this is a good supportive training ground for GCA and PMR and as you have learned it really pays to be a well informed patient.
Yes I have been under a consultant rheumatologist for almost two years. The appointments are often cancelled due I imagine to work overload.
I am being cared for at the Royal Surrey County Hopital in Guildford, they have a dedicated team. Can't fault the eye clinic. Luckily I had an appointment with the rheumatologist three days after the last attack so got to speak with him very quickly. Was glad this one had not been cancelled. He has been most supportive and ordered all relevant scans blood tests etc. Hopefully I will get the results in the next week or two. He is checking that there is nothing else other than the GCA and Polymyalgia going on.
Thank you for your encouragement, agree one has to be well informed.
Hello Charlie - sorry to hear you might have a relapse. Want to follow your experience closely as I am on 3mg (reducing to 2 tomorrow) for GCA. With every reduction comes a bit of unsettlement but need to know what is the body's adjusting to lower dosage or what is a 'flare'.
After my experience I would only say be careful. We all want to reduce the amount of steroids we take. I was doing pretty well on 5mg, started to go downhill on 3mg, now I am back on 40mg and will have to go through all the reducing over months once again. Small price for saving my sight.
Thank you for your support and advice, GCA is a bit frightening it hits so suddenly. I felt there was a marked improvement in my sight this morning.
Sorry I do not know who I saw at A&E, he seemed to know what I was talking about.
I have just come home from an appointment with the ophthalmologist at the Royal Surrey Hospital Guildford. I had lots of eye tests and the double vision has cleared and no damage to the eye nerve or the retina. The sight is all ok and getting back to normal. Such a relief. I am under a really good Consultant Rheumatologist Dr Chander at same hospital. He ordered an MRI scan which I had last Wednesday, blood tests last Tuesday and a US Doppler carotid artery scan on both arteries for tomorrow. I will have a follow up appointmen with Dr Chander once they have all the results. I have always had great care at The Royal Surrey, a very dedicated team. Today my doctor said a relapse of GCA should always be the first suspect and treated immediately with high dose of steroids and not treated as a suspect migraine. He takes Giant Cell very seriously and says it is such a dangerous complaint. He suggested I ask the rheumatologist if I should take a 60mg dose of prednisolone immediately should I have another relapse and stay on 60mg till I can get an appointment at the hospital. So pleased I did take the 60mg once I had the attack but it should have happened when I first saw the GP. I will be very wary about going down to 3mg daily ever again. Life is too big a struggle when there is so much pain. I used to worry about the weight gain, it was never huge but didn't like it. Now I feel a few pounds well worth being safe and reasonably free of pain.
I hope they know what they are doing with you Sondya, 2mg is very small should you feel things are not right do get back onto your doctor immediately. This relapse of mine was so much worse than the first attack and is taking much longer to clear up. Blindness can happen in hours and some GP's not taking a diagnosis of GCA seriously enough, as I found out this time.
The Polymyalgia is another case altogether, awful pain and weakness but you won't go blind with it. I had it about six months before the Giant Cell, it is so debilitating and again the GPs didn't diagnose it.
Thank you all again for your input, we are not alone.
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