Scared

[Odowd]

I'm really concerned about going blind? I have Asperger's syndrome,severe sleep apnea and a heart condition and I've been in pain for months before being diagnosed with PMR having had X rays Tests etc etc that showed no physical cause for pain in my hips and shoulders my relief at finally finding out the cause has now turned to panic having read posts about people going blind, can someone put my mind at rest please kx

[DorsetLady PMRGCAuk volunteer]

Hi Odowd,

As you have now been diagnosed have you been prescribed Prednisolone, and if so what dose?

If you have PMR alone, and your pains would suggest that what it is rather than GCA then there is no reason for you to assume the worst scenario. For two reasons, a) PMR does not cause blindness, the blood vessels affected are in your main muscle groups not your head (like GCA), and b) once you are on sufficient medication whether that be for PMR or GCA then you are very unlikely to suffer blindness.

The majority of cases are caused pre diagnosis and therefore pre Pred. I was undiagnosed for 18months which led to me losing the sight in one eye, but I am in a tiny minority, and like lots of things the fear of something is actually more frightening than the reality.

Have a read of the attached, and please don’t worry unnecessarily-it won’t help you or your PMR, but of course you should always be vigilant, but not paranoid!

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk....

[yogabonnie in reply to DorsetLady]

DorsetLady is of great comfort and wise to boot. Don't worry too much. (and if you are having trouble thinking about all this too much.. try my link to RELAXATION on an earlier post of mine.... just click my name)

[SheffieldJane]

Hello Odowd and welcome to this site. Stick with us I am sure you will find it useful, informative and supportive. You have a lot of health issues to contend with, I can understand your concerns. If your diagnosis is PMR which it seems to be then I wouldn’t be too worried about eyesight issues. I would carry on feeling relieved and enjoy the relief from pain and stiffness that Prednisalone will give you.

Giant Cell Arteritis is a related condition that presents with headache, jaw claudication and visual disturbance. The treatment is the same as for PMR ie Prednisalone but at a much higher dose, perhaps 60 mgs. The Pred. Safeguards your eyesight. Everybody with PMR should be aware of these symptoms because a PMR diagnosis doesn’t,mean you can’t get GCA as well. I have PMR and worry sometimes. I have had more eye examinations ( thorough ones) than I would normally. I would seek medical attention for bad headaches particularly in the temple area. I would certainly see a doctor if it hurt to chew my food. You are probably quite safe because you are under the doctor for PMR, are on the right drugs and will be monitored carefully. This forum has helped me not to get too scared. People like DorsetLady ( who has had GCA and come out the other side) are always on hand to give information and support. So worry not you are in good hands all round.

[MaryA_]

Coming from a medical background, I too was very scared at first because of the unknown. I had not even heard of this PMR thing! Than I found Kate Gilbert’s book. I ordered it from Amazon and found it to be very helpful! It’s a good place to start Now along with the advice from these experienced ladies am now trying to take thing in stride Good luck with this new journey.

[jinasc]

Go to this website and read everything you can. pmr-gca-northeast.org.uk

90% can be downloaded and read at your leisure. Knowledge is power.

Yes, I had GCA and after 5 years it went into remission.

One thing, go to a good optician and have your eyes checked over. If you do have the start of cataracts and do not need glasses, then make sure you wear sunglasses whenever you go out in the sun if you do need glasses then ask for re-actolite rapide lens.

An optician, whose Mother has PMR and came to a support group meeting, told us that the combination of Pred and Sun can cause existing cataracts to grow. I then knew at the start of GCA why my optician had insisted I have re-actolite rapide, yes, I had the start of cataracts and they did not grow whilst I was on pred. I cannot say this will happen for everyone as I have no way of knowing about other people's experiences, just mine and the Opticians Mother.

[PMRpro Ambassador]

If you have been diagnosed with "just" PMR and all your symptoms have responded well to a PMR-level dose of pred then the likelihood of going blind are very small. That can happen with GCA but mostly you would have relevant symptoms beforehand to act upon: severe headache that doesn't respond to painkillers, possibly scalp pain and jaw pain are common. Obviously not everyone gets all symptoms and they vary in intensity but most people do get some warning.

I was undiagnosed with PMR for over 5 years - my vision is fine.

Don't panic - just be aware and watchful.

[GOOD_GRIEF]

First, you're going to be fine. Few people progress from PMR to GCA, and even fewer suffer vision loss.

As long as you know the signs of GCA and see a medical professional immediately if you suspect it(a doctor treating you or go to the emergency department), there's no reason to think that you will go blind.

You just need to know that without proper treatment of PMR/GCA, this is a possible outcome though remote. This group has done a great job getting the word out about PMR/GCA, so it's not a mystery in the medical community the way it once was. Realize that few people without problems are going to look for or post on an internet website about a disease, so this is a skewed view of the condition.

Talk this over with your doctor, and make a plan so that if GCA symptoms ever develop, you'll know what to do