I suddenly started losing the sight in my left eye about a month ago, it is pretty useless snow blindness now. I am not yet definitely diagnosed with GCA, but as other diagnoses get ruled out, it is looking like the most likely to me. I have had a lot of pain on the left side of my head for a long time. I was on 60mg of pred for two weeks, started taper to 40, then back up to 50 due to eye pain for now.
Has anyone who has lost their sight regained it? Are there any vascular/other surgeries that attempt a recovery of vision?
Thanks, MMLE
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missmylefteye
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You will hear from people who know much more than I do but I have never heard of someone losing their sight while being treated. I can't imagine what you are going through. I wonder why you aren't being treated more aggressively with higher doses of Prednisone in an attempt to save your sight.
In 2011 my husband, who had suffered NO previous symptoms,started to experience vision disturbance late one afternoon and quickly lost the sight of one eye quite dramatically within a few hours.
Realising that his sight was definitely deteriorating I rushed him to the Urgences of the local university hospital where we were living in France at the time . By very good luck it happened that the resident neuro -ophthalmo specialist ( prof Dan Milea ) was holding a conference there that evening and he came up to the department to examine my husband. He suspected GCA although there had been no earlier warning symptoms , he asked for immediate blood test to check CRP and ESR, which showed both to be alarmingly high. After very quickly organizing other examinations and scan Prof Milea prescribed a very high dose of Cortisone intravenously. By this time, it was now midnight ,the sight had completely gone from that eye. The intravenous cortisone was continued for twenty four hours and then stopped and and given orally at 85mg...... My husband was closely monitored all the time and a temporal biopsy did confirm the presence of a large number of giant cells.
On the third day after he had been admitted I walked in and he had his "good " eye covered and he said that he could see me ,he could even make out a blue ear-ring I was wearing.. an overwhelming moment ! Lots of misty "fog- Covered" patches continued but the vision had started to return.
This caused quite a stir over the ensuing weeks in the Ophthalmo dept as the vision slowly improved - in fact Prof Milea from time to time called my husband in as living -breathing demonstration model in his tutorials ! As he explained it to us, early and urgent examination and diagnosis and immediate treatment with a high dose of cortisone had shown that loss of vision can be reversed if dealt with in time. I believe he prepared and presented a paper on this.
The sight continued to improve slowly and today he needs only off the shelf reading glasses.
Five years later,we are now back in UK and he is still taking 5mg/4.5mg prednisolone. He is monitored here with monthly blood tests and contact with his GP and sees a consultant rheumatologist every six months. We are so appreciative that he is a well and fit 80 year old who walks 3 miles every day and can spot the blackberries and the sloes on the bushes quicker than I can..
We can never express our gratitude for the level of treatment he has received, especially in those first crucial days, but also over the last five years - his follow-up care here is as good as it was in France and I must say that our own personal experience of the NHS has been very positive.
Our experience together with all we have learned during these five years has shown us how important early treatment is. Please please please if you suspect GCA or have worrying symptoms see your doctor and if necessary emphasise to him your concerns, amongst all their other pressures GCA is not necessarily the first thing they think of...
Missmylefteye GET TO YOUR DOCTOR AND MAKE A FUSS, please !
Hi SheffieldJane, I have just seen your kindly post - bit of a coincidence really since we have just got back from a lovely fortnight's holiday in the little town in France where we were living when GCA struck my husband. While we were there we called in to see the doctor who had been our GP and who monitored all the aftercare my husband received ...a lovely quarter of an hour when we were able to thank him again for all he did, not only for the patient but also for the patient's very frightened and anxious wife !
Update on my husband : he continues to keep well and has had no sign of a flare up for over two years. He is however still taking Prednisolone at 3.5/4 mg , doing the slowest ever reduction plan that has sort of evolved to keep him steady. Neither the consultant nor the GP appear unduly concerned about the fact that he is reluctant to try any quicker reduction . This is probably because he is in good general health. His CRP is monitored every month and remains at 5 or below, his blood pressure is good ,he has Type 2 diabetes with medication but his sugar is at pre-diabetes level and his metformin dose has just been reduced.
In a very cheerful let's-not-make-a-fuss sort way he does pay attention to his medication, his diet and exercise. We walk every day for at least an hour ( and have just completed the Country Walking Magazine challenge to Walk a 1000 Miles between January and Dec - high fives and a geriatric jig when we hit that magic number !) All this at the now age of 81 and GCA and prednisolone still part of the scene - I am so very proud of him and his cheerfulness and his sense of fun and I continue to be so very grateful for all the help and support he has had from the medical services here and in France. It's been a long old haul of over six years now and at the beginning I think we both thought that it was pretty devastating and going to have a nasty lasting impact on our lives and the depression and fear that comes with that can have such a negative effect on life in general can't it ? In our case we have been so very very lucky . I really do think we are truly blessed. I just wish that all the PMR and GCA people could get to the place we have been so fortunate to reach. Good luck and Bon Courage to everyone climbing their own particular hills.
Sorry to hear your story. Not quite sure whether your eyesight was affected before you started Pred or whilst on it. If whilst on it, then that is unusual.
Have you been seen by Ophthamologist? If not, then you should be. He should be able to tell you whether Optic nerve has been starved of blood which is normal reason for sight loss in GCA. If that is the case, then sorry, like me, the sight will not return.
There are some sight losses that can be recovered, but I think you should be prepared for the worst scenario - sorry. But you do need to see an eye specialist.
Hi missmylefteye, Your acronym fits me exactly too! As Dorset Lady said, it's very unlikely that vision will return once the optic nerve connection has died. That's what happened in my case, so I can verify those fears. All we can be thankful for is saving one eye & being able to function almost as well without one & get on with life. If you were diagnosed early enough, maybe you get lucky like the essujay post above, but if not welcome to the club. Best of luck.
As essujay says - it is all down to the speed with which treatment with very high dose pred is started.
Many people get minor visual signs in the few weeks before loss of vision occurs - and if high enough dose pred is started then it probably avoids sight loss in the long term. However, if the inflammation is severe and the underlying cause very active, even a fairly high dose of pred, 40-50mg as is commonly used in GCA, won't be enough to reduce the swelling of the arteries which supply the optic nerve (and in some cases the retina though that is more unusual) and the blood flow is reduced so much that damage to the optic nerve occurs. If that is very short-lived it may recover and vision be restored - it's effectively a stroke confined to the optic nerve. If the damage done to the nerve cells is extensive, if a large area has died, if it has gone on for a long time, then the likelihood of recovery is far smaller. But it can happen while on a highish dose of pred - you aren't the first person to experience it I'm afraid. That is the primary reason for not delaying starting pred and being aggressive, using what seem to be very high doses and not reducing the dose too soon.
It isn't a vascular problem - it is irreversible damage to nerves and they are notoriously unwilling to heal so there is presently no form of surgery that could make any difference.
Yes PMRpro, you have described very clearly exactly how GCA damage to the optic nerve was explained to us.. my husband was lucky to be diagnosed so quickly. It is so important that people with symptoms of GCA see a doctor asap ..
And just as important that the doctor registers what it could be - and all too often GPs don't have a clue. Many don't appear to even have heard of it. Unfortunately the same applies to some A&E staff and even rheumies. There is so much educating to be done - that's why we at the charities spend so much time on the forums and support groups. We can't get to everyone - but if at least the people with PMR know what to look for it will help since 1 in 6 of them go on to develop GCA.
There is an initiative to start up fast-track services of the sort run for stroke patients but a few regions tried them but couldn't justify the funding - too high a cost for a small number of patients except in areas of high population like the southeast of England. The initiative also includes education of the local primary care doctors - and that is key. I don't think you would really need a dedicated clinic for GCA - if the GPs know they can call the local rheumatology or eye department and get the patient seen in A&E by an expert within hours that also works and is much cheaper in the long term.
I agree there seems to be an alarming lack of awareness in general...
At my husband's last appointment with his rheumy ,Dr Adrian Peall at Hereford County Hospital however, we were cheered to hear that he ,Dr Peall is involved in the raising awareness programme in this region - so things are perhaps moving positively ...It is SO important that GPs are aware and that certain symptoms ring an alarm "GCA ??" bell with them in the very first instance.
What a good job this forum does of informing PMR and GCA patients, it is a pity that GPs don't have the time to read it. Some of the larger practices have doctors designated as having interest in certain fields, cardiology, dermatology etc , in a perfect world we could hope to raise the profile of GCA and PMR to this sort of category.
It is interesting to discover and understand more and to share experiences so thank you PMRpro and this forum!
I suspect that when a rheumatologist has personal experience of someone with GCA losing their sight, even partially, it does give them a bit of a push. There are a lot of nastier rheumatology problems but as far as I know GCA (which is a vasculitis) is one of few that actually cause such a devastating effect if not caught in time - and you don't have long.
Even the paramedics in Yorkshire Ambulance Service know more about GCA than most GPs!!!!
Thx for your comments everyone. My husband read them to me. I am being very careful with computer for now, because, unbelievably, my left optic nerve has become painful & is inflamed. I went to ER today & got 1000mg of IV pred, it did help with the pain & hopefully my right eye will be safe. What an unexpected trauma this is. It is helpful to hear you guys stories & advice.
By the way, I am 57yo. I live at high altitude in Colorado, USA. I started with minor symptoms, some peripheral vision loss on left eye. I went to an optometrist, who diagnosed severe dry eye with inflammation, and did not sent me to opthamalogist. I wasted a whole week, then went to NP in primary care drs office. He sent me immediately to opthamalogist. I still only had the mild loss, but my optic nerve had severe edema. He didn't start me on pred right away, but by next apt, three days later, white veil & scintillating floaters, shapes & scattered opaque blank spots took over my visual field in my left eye. That nite I started on the 60mg of pred fro two weeks. I was doing well as the severe pain that I had been living with on left temple, side of face settled down a lot & a little improvement in the vision. I git in trouble again as I began the taper to 40mg. Back up to 50 few days later, but more pain and vision more veiled. The pain in right (other eye began). Well, that's most of the details of my story.
Hmmm - I remember my (wonderful) optometrist in Scotland telling me of one who had suspected GCA as a possibility but didn't send his patient to hospital, wanting to think about it overnight. Next morning it was too late. He faced at the very least a disciplinary process and I think may have been sued.
And to be honest - if you already had visual symptoms 60mg for 2 weeks was not enough - i.v. very high doses are called for - as much as 80 and even 100mg/day may be used. That is water under the bridge - but you should bring it to the attention of your doctors...
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