Polymyagia

[ajosse]

When I

Visited the rheumatologist consultant she said do

You know you can go

Blind ?? Is this so or a very extreme case?

[Aleish]

Is just PMR or GCA? Only if GCA and not on Prednisone at a high dose to start.

[Blanksia in reply to Aleish]

GCA AKA Horton's Disease/Syndrome. PMR does not cause blindness but can be associated with GCA....which, untreated, can cause blindness. Be aware of any head/jaw tenderness.

[Polywotsit PMRGCAuk team member]

Dear ajosse - if this is all your consultant said she was really being quite irresponsible. If a person has GCA which is not diagnosed in time, the inflammation in the arteries can lead to blockage of the blood supply to the optic nerve. This may cause irreversible sight loss, and is something we at PMRGCAuk (pmrgca.org.uk) are campaigning to make a thing of the past. How? By making sure that everyone knows the symptoms of GCA and that, wherever you are, you can get onto a fast track pathway that will get you diagnosed quickly. It is estimated that about one third of GCA cases are only diagnosed after the patient has sight loss in at least one eye.

Once you are on steroids the inflammation subsides and it is very rare for sight loss to occur once you are under treatment. People with PMR should know about GCA as a 'flare' may be a sign that their illness is morphing into GCA.

[maria40 in reply to Polywotsit]

Totally irresponsible! PMR is scary enough without such an unexplained remark. When I was first diagnosed with PMR my then GP went calmly through all the symptoms of GCA, stressing the importance of immediate attention if they appeared but reassuring me that they wouldn't necessarily do so.

[DorsetLady PMRGCAuk volunteer]

Hi,

As Kate said, a bit of an irresponsible remark from your Rheumy if she didn't then explain the possibilities in more detail.

Yes you can go blind, but that's more likely if you have GCA and are not receiving the correct or any amount of steroids.

As Kate also says PMR if not treated correctly can also morph into GCA, but that isn't a given, but it's a possibility and patients should always be aware if they develop unusual and/or new head/eye symptoms.

Unfortunately I did lose the sight in one eye, but that was after 18 months of being undiagnosed. My GP thought my pains/stiffness was due to a frozen shoulder, and as I had never heard of GCA nor PMR I had no reason to disbelieve her. The typical head symptoms -again undiagnosed- came about 6 weeks before actual sight loss, but unfortunately the whole gamut of symptoms were not associated. It was also a few years ago before the fast track pathway that Kate refers to, and I would hope it doesn't happen too often nowadays. But if course, if the doctor doesn't think about GCA then it still may!

Do you have GCA or PMR, or both? What prompted her comment I wonder, did you indicate that you didn't want to take Pred and she was trying to convince you you needed to?

[PMRpro Ambassador]

I shall be making a stronger comment than Kate! Consultants like that should be reported to PALS! A statement like that should be made in context with a careful explanation about the relationship between PMR and GCA - not just thrown into a consultation.

If what you have is clearly PMR there is no reason to panic - but if you develop other symptoms typical of GCA then you must go straight to your doctor and report them.