Eye pain and GCA, Neurologist thinks are connected.

[Cally55]

Had GCA since February 2016. During last 18 months have experienced stabbing pain behind right eye and sometimes stabbing headache on same side. Rheumatologists at hospital A said not GCA. GPs referred me, at hospital B, to ENT, then opthalmology who referred me to neurologist.

At last a diagnosis, probably GCA as there are 4 major nerves that can be affected. She has referred me for MRI angiogram and nerve tests because feet are a bit numb. Peripheral neuropathy is part of GCA apparently not prednisolone as I had thought.

While I wait for scan and result, about 3 months, she wants me to increase prednisolone from my current 7.5 by alternating with 10 mg, and possibly increasing azathioprine. Has anyone else tried this regime?

She is going to refer me to rheumatology at hospital B, I hope that the commissioning group will allow it. I have told my GP that I have lost confidence in hospital A!

[HeronNS]

I'd like to suggest that alternating 10 and 7.5 will be difficult for your body. Can you not simply go up to 10, which is still a fairly low dose, and if you do have GCA not enough anyway?

[Cally55 in reply to HeronNS]

It seems weird to me, but she said it might make tapering easier at the lower doses. I will give it a go as she is the first consultant to offer something constructive for my eye pain, which happens when I close my eyes or blink, unless I am very gentle. I am recovering from a flare in November, which gave me a bad headache and weight loss. This weight loss attracted the attention of some clinician who organised a number of tests for everything from Crohns to cancer. All these were fine so GCA remains most likely. I also have osteoporosis and fractures so they tread carefully with the prednisolone. Interestingly the eye pain went when I had a short spell of 30mg only to return when I got back to 10mg.

[HeronNS in reply to Cally55]

I don't think it will make tapering easier at all, probably the reverse. PMR is not like other illnesses for which prednisone is prescribed. If you want to taper you should never decrease by more than 10% of a dose. This is why slow tapering methods were developed which we share on here. Check the pinned posts on this page for the Dead Slow Nearly Stop method. But until the eye pain is properly diagnosed you won't be tapering.

Do you take Vitamin K2 (not K1) along with whatever else you are doing for your bones?

[Cally55 in reply to HeronNS]

I think she was a bit confused, my medical history is a bit complicated for anyone to take in at short notice. She managed to discuss my GCA and do an exam in the course of 25 minutes. I think I may try 10mg every day until the scan and then taper slowly if there is no urgent call.

I have had an infusion of zolendronic acid. Can you suggest a reliable brand of K2? I suspect the one I bought was not all it should be, also a lot of it is mixed with other things and is a bit pricey. I am in UK.

[HeronNS in reply to Cally55]

The only suggestions I can make regarding K2 are: some people get an oral spray. I have not myself tried this, but it does avoid one more pill! Mine is a Canadian brand made from non-GMO natto (fermented soy). So look for something non-GMO. My capsules are 100 mcg and I take 2 a day. Apparently oily capsules are best (like my Vitamin D3) but I haven't actually found this form. So I always have my K2 at a mealtime because as a fat soluble vitamin it should be taken with a bit of fat.

[PMRnewbie2017 in reply to Cally55]

Nature's Best. They sell the pure K2 mk7. You can buy on line. If you buy 2 it is cheaper. You will be on it for a long time so no point being frugal.

[Cally55 in reply to PMRnewbie2017]

Thanks, as it is classed as a food supplement one can only take the manufacturers word that it has anything useful in it. A satisfied user is a far more useful guide!

[PMRpro Ambassador in reply to Cally55]

"she said it might make tapering easier at the lower doses"

In my experience - no it won't. Not personal experience but that of hundreds of patients over the years. There are infinitely better ways of approaching tapering without kicking your body from the right today and the left tomorrow which is what yoyoing your dose amounts to. Tablets come in 5, 2.5 and 1mg sizes whether you are on plain or enteric coated pred and that allows you to build your dose with 1/2mg accuracy down to 2mg.

[Cally55 in reply to PMRpro]

I have been tapering in halves, but I seem to hit a brick wall around 8 or 9. At 10 and above my eye is not as painful, at high doses the pain goes altogether. As she wants me on this dose for up to three months 8.5 or 9 daily would seem to have the same effect. The other part of the treatment was to increase the azathioprine as an immunosuppressive. GP wasn't willing to do this without a letter from consultant, which will take a few weeks! She is very aware of side effects.

As always with "our" NHS there will be more waiting!!!

[PMRpro Ambassador in reply to Cally55]

You are never reducing relentlessly to zero - you are looking for the lowest dose that manages they symptoms as well as the starting dose did. You have probably achieved that at just above 10mg - it doesn't mean you won't get lower, just not yet.

15 years into PMR, well over 10 years into pred I still require 10+mg to be well, in the current flare I am back to over 15mg for really good management. I tried mtx, it was hellish within a month - I felt as if I was back to the beginning of PMR. Careful tapering does as well without the additions of mtx and aza.

[Cally55 in reply to PMRpro]

The neurologist did say that GCA takes a long time. Which is different from rheumatologists at hospital A who are fixated on reducing steroids to zero. Since my life has changed irreversibly since the fractures I see little point in being uncomfortable with GCA as well!

She indicated that the azathioprine is to suppress my immune system whilst the steroids are to reduce inflammation, a distinction not made to me by rheumatologists with their "steroid sparing".

I am not sure what the MRI Angiogram is supposed to show, but hoping hospital B has a more up to date scanner than the other. Otherwise a merry half hour in a small noisy oil drum awaits!

[lcove]

You should see an opthamologist who specializes in Retina problems. One of the first problems of GCA is going blind.

[PMRpro Ambassador in reply to lcove]

The blindness in GCA is not retinal in origin, it is due to ischaemic damage to the optic nerve - deep in the occipital region of the brain.

[Cally55 in reply to lcove]

It was an opthalmologist who referred me to the neurologist. She could find nothing wrong from her perspective. It was the usual set of tests.

I have been experiencing blurry vision of late with some large floaters and periods of " optical migraine". All anyone will say is that it is harmless and not GCA. All the same it is unpleasant.