GMA: I have PMR but I noticed my eye sight has... - PMRGCAuk

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England05 profile image
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I have PMR but I noticed my eye sight has gotten worse. I have needed glasses for reading so I can see with out them but not read and this has gotten worse plus I now also have neck pain. I am worried that I am getting GMA Talked to my rheumatologist who said "do you think you are going blind" no I don't think I am going blind but my eyesight has gone to hell in a hand basket as far as reading...she told me it was my age which I am 63 and to get my eyes tested which I did and get new glasses which I am. She said neck pain not a symptom and I don't have any of the other symptoms. I just wondered if I am reading too much into this and.... I am not a hypochondriac but this whole thing is so new to me I have had PMR for on year and I can't ask anyone as this site has the only people I know that are going through this.

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England05 profile image
England05
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27 Replies
PMRpro profile image
PMRproAmbassador

You mean GCA - giant cell arteritis? Yes it is possible to go on and develop GCA when you have PMR, even though you are on pred and it can happen at any time. But the criteria for symptoms of GCA are more than just blurriness and inability to accommodate. And only about 1 in 6 of patients with PMR symptoms develop GCA, usually fairly soon and it is unusual to develop it much later. What did the optometrist say when you had your eye test?

Pred itself can cause blurriness - and so can dry eye syndrome which a lot of people with PMR also develop. I have PMR and it is probably more Large Vessel Vasculitis (LVV, GCA is a LVV, not all LVV is GCA) and I did briefly have scalp pain and jaw pain - both pretty much disappeared on their own and since I have been on pred they have gone altogether. But for a long time I was moving my glasses up and down my nose to be able to see the computer screen. And while until even just a year or two ago I would have said I have no accommodation problems (the problem in the elderly of your arms not being long enough to see the paper without glasses!) in the last 18 months that has changed a lot. I will be 65 in a few weeks. Most people start to have such problems in their late 40s - we have obviously been lucky!

Neck pain not a symptom of GCA? Don't know I would be that definitive - but it jolly well happens in PMR and in myofascial pain syndrome. You are obviously very tense about this - and that won't help your back and neck. See how you get on with the new specs - and don't worry too much if they change again - that's why I just stuck with my old specs and adjust their position ;-)

England05 profile image
England05 in reply to PMRpro

yes meant GCA thanks puts mind at ease and did suffer from dry eye before so maybe just got worse. Thanks for the input eye doctor said all was ok but I live in USA and to be honest not sure anyone here knows what this is here ....but eyes looked ok just needed to change prescription....

SheffieldJane profile image
SheffieldJane in reply to England05

I can fully relate to your fears and worries, I get into a tizzy like that quite regularly. I have had PMR diagnosed for over a year and my eyesight has definitely deteriorated, the optician says not enough to warrant new glasses. I get neck and back of the skull pains often and eye strain. GCA looms as an anxiety whenever I get a twinge around my temples .

I am sure that we aren't the only two. Your Rheumatologist sounds pretty charmless. No wonder you worry.

You came to the right place and PMRpro was on it.

Best wishes Jane

PMRandRA profile image
PMRandRA in reply to PMRpro

Heh heh! Nearly 65 eh? So you are still a baby 😍 and still " when I'm 64 ing" Oh the joys of youth PMRpro😆

Rude bit coming up:

On Sunday I said to my daughter (40) " you do realise that I will be 70 next year!)"

To which she replied, "but Mummy, this year in September you will be Soixante- Neuf!"

We laughed so much that my PMR danced! Suffering now though!

🌷🌹

England05 profile image
England05 in reply to PMRandRA

need to keep that sense of humor...

HeronNS profile image
HeronNS in reply to PMRandRA

PMRandRA, I've gone around for the past few weeks telling everyone, first of all, I'm going to be, and now, I am, 70 because it's been so hard for me to come to terms with that. The allotted three score and ten. Anything more is extra. Yikes.

England05 profile image
England05 in reply to HeronNS

I figure everyday I am upright and able to function albeit slow some days is a plus. just say you are 70 years young.....

HeronNS profile image
HeronNS in reply to England05

I guess it's just one of those milestones, like the day I distinctly remember being out for a walk, I'd just turned 35, and I felt the shocking realization that I was now middle aged. But as I've said on this forum elsewhere, I think inside I'm still three!

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Middle-aged is 10 years older than you are...

HeronNS profile image
HeronNS in reply to PMRpro

I used to say that! Now I guess I should say that old age is ten years older than I am. Only there is a point, and for me I think 70 is it, when one has to admit that one really is old. And it is better than the alternative.

PMRandRA profile image
PMRandRA in reply to HeronNS

Don't forget Heron that when the 3 score years and 10 was mooted, antibiotics hadn't been invented. Nor had hospitals come to that.

95 is the new 70. Look at the Queen and Prince Phillip! 😃

HeronNS profile image
HeronNS in reply to PMRandRA

Of course they should live long lives. Health has been shown to correlate with socio-economic status!

Doralouise77 profile image
Doralouise77 in reply to PMRpro

I am booked to see a neuro-opthamologist July 5th for "things that don't add up" according to my very good optometrist (regular opthamologists gave me a clean bill but omitted some tests!)....I have had three prescriptions in as few months and with each one my eyesight had changed and I couldn't see a thing through them....it definitely is worrisome....good luck....

Cheers

Mgeorge profile image
Mgeorge in reply to Doralouise77

Let me know how your visit goes. I have an appt. with a neuro-opthamologist July 27th. I have been to my regular eye Dr. since November (diagnosed with PMR/GCA in May 2016 ) Blurry eyes, tearing, fear of driving, can't see TV captions 3 different diagnoses finally settling on pred ( 60 mg now down to 15mg) A cat scan showed fatty deposits around my eye orbits. Is there something more? I had a benign brain tumor successfully removed in the early 70s, but wonder if I have more vascular problems.

Doralouise77 profile image
Doralouise77 in reply to Mgeorge

Mgeorge - I phoned my optometrist yesterday (who referred me to the neuro-opthamologist) and told her I was concerned about recent changes and she has booked me for another field test next week...previous ones diagnosed bilateral glaucoma a few months ago, plus I have a cataract starting....my distance vision is extremely blurry...I'm anxious to get to the specialist ....I'll let you you know how it goes 😊......and I've decided I won't drive anymore until I get sorted....after a drive to a neighbouring town last week, a police officer came to the door and said someone had notified them I was "driving erratically " .....😳😮🙁....more to the story but that was the clincher....best of luck....

Mgeorge profile image
Mgeorge in reply to Doralouise77

Thanks for the reply. I still drive, but not my precious grandgirls or unfamiliar routes. I had cataract surgery four years ago before PMR/GCA and one of the diagnoses was cataract scarring ( 4 yrs later? )

Doralouise77 profile image
Doralouise77 in reply to Mgeorge

It was driving an unfamiliar route that got me in trouble....😟.....I hope my eye issues get resolved, I couldn't bare to not drive anymore....stay tuned 😊

Morning England 05

As PMRPro has eloquently already given you the facts all I can say is I've also had blurred eyesight, heafaches and anxious moments when I get temple or jaw pain or neck pain. ..I think, personally, for me it tends to be stress related particularly when I've been staring at a screen or a book with very small print for long periods. Sleep helps.

Unlike everyone else, or so it seems, I must have just climbed out of nappies cos I'll be 57 in a few weeks lol, and been wearing glasses for the last 30 years with each 2 year check requiring a new pair, I'm convinced that PMR is causing this.

Best wishes

Meggie

PMRandRA profile image
PMRandRA in reply to

Oh yes ? 57? You still have cradle marks on your bottom! 😜🤣

in reply to PMRandRA

That and nappy rash lol....though hopefully not wet behind the ears as my hearing aids might blow up...🤗

PMRandRA profile image
PMRandRA in reply to

ROFL! 😆😁🤣🤣😂

PMRpro profile image
PMRproAmbassador in reply to

Only 30 years? I remember getting my first specs at 7 and discovering that trees had leaves!

in reply to PMRpro

Well, I had to admit that using a magnifying glass to read anything was a massive pain, especially a computer screen...lol, and eventually swallowed my pride and got some reading glasses...

PMRpro profile image
PMRproAmbassador in reply to

Which are just more convenient magnifying glasses ;-)

in reply to PMRpro

Yep...and hands free:)

Patience_1 profile image
Patience_1

Hello England05, some of your experience chimes with mine.

After I was diagnosed with pmr in September 2016 I made a point of having a thorough eye check up, and I did need a new prescription for glasses. I've used glasses for reading and close work since about 1980, but over the years needed very few increases in magnification. This all speeded up a bit as I aged (am now nearly 65), but I was still more than fine with small upgrades every 3-4 years. In the past 7-8 years the rate of deterioration had slowed down again, so I assumed I was levelling off.

However... I too now have quite blurry longer distance vision, noticeable over the past couple of months. Previously my long vision was extremely good, but it has seemed to me lately that I maybe should now begin to use glasses for driving. It's only about 7 months since I got my current glasses, so this is a rapid acceleration for me, and it has made me wonder whether it's the effects of the pred. I would love to think it is so, and that with pred reductions my sight might improve again, but perhaps that's pie in the sky!

As for neck pains/stiffness, I get this quite often, and if I sit too long (for example hunched over a computer!) I consciously have to move about to ease things. Proper (excruciating) headaches occurred in the earlier stages but eased even before I got my diagnosis and started on pred, and now I just get a sort of mild background headache occasionally. I take it as part and parcel of the pmr, but thanks to all the helpful information on this forum, I am very conscious of the need to watch out for possible symptoms of gca, and if I started getting problems in my jaw or temples I would straight away seek medical advice - I'd rather waste my and their time on a false alarm than risk going blind!

England05 profile image
England05 in reply to Patience_1

thanks appreciate that. touch wood no headaches but definitely eyes have changed. its good to hear not alone in this.

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