GCA update

[jaycee444]

Have seen Rheumatologist, had ultrasound, and eye examination and all seems fine thank goodness. Still have problems with focus but all other symptoms gone. Have to now reduce from 40m down 5mg per week. As I was only on the 40mg for 6 days does that seem an ok taper? Obviously when I reach my original dosage I will want to go back to a slower taper.

[DorsetLady PMRGCAuk volunteer]

Should be okay - but when you get to 15mg (which is a bit higher than you were on), I would stop at that for a couple of weeks. Then back to your normal tapering.

Good luck - and hope everything settles.

[singingloud]

What symptoms do you have with your eyes? Mine are so bad. I can only focus for a short time which is bad since I'm a executive administrator for my church and I have to use the computer for so much of my job. My cataracts have increased which is making driving at night pretty scary. Thanks

[jaycee444 in reply to singingloud]

Same symptoms. Have had 2 new prescriptions in past 6 months and neither have made any difference. .eye exam has not shown any obvious problem but am having real problems with focus. Have cataracts but they are not ready for surgery yet apparently.

[Orpheus82 in reply to jaycee444]

Cataracts are ‘an obvious problem’ and the cause of your change in prescription and problems with focussing. If they are affecting your every day activities then they may be ready for surgery. The best person to ask is your ophthalmologist.

To singingloud I would say that if driving at night is scary then please don’t! Cataracts cause significant glare at night and may well reduce your vision below DVLA standards. Tell your optometrist/ophthalmologist about the glare as that can be used as a reason to operate sooner. Also take breaks from computer work every 20-30 minutes as your blink rate slows down and generally adds to the feeling of discomfort.

[maria40 in reply to Orpheus82]

I've had both my cataracts removed - the second about 6 yrs ago but in the last year I've had problems with focussing , particularly laptop and TV. I've had two new prescriptions and yesterday collected glasses made up with the third and still no real improvement. GCA since 2010.

[Orpheus82 in reply to maria40]

Have you had a recent check up with an ophthalmologist? There are so many causes of problems with focussing that it is difficult to speculate. Glasses only focus the image onto the retina. If you still do not see clearly then there may be some other problem. It can even be down to the muscle balance of the eyes which can be investigated by an Orthoptist. If your optometrist has supplied three pairs of glasses in a short period of time and none are helping I think it’s time for an ophthalmic opinion.

[maria40 in reply to Orpheus82]

Yes I have and the third pair were prescribed after an in depth test from an opthamologist with retinal photography etc. The only thing which came up then was that my eyes were showing some signs of raised blood pressure but I take bisoprolol and at my last measurement BP was well below the higher limit. I am trying the new specs this morning and they do seem a little better so I will persevere for a few days before going back with them.

[tytto in reply to maria40]

I too have a visual problem with the left eye. Diagnosed with PMR almost 9 months ago, although had severe pain bilaterally in hips, shoulders, neck, arms from shoulders to elbows for 3 months prior to diagnosis by rheumatologist. Temporal

artery biopsy negative: opthalmalogist discovered atrophy of optic nerve in left eye.

Distance vision has remained O.K: reading is difficult. I have tapered to 6mg dosage from a high of 60mg without too many issues. Fatigue never seems to go away - at age 83 I have been able to cut back on activities. I am irritated that I had to wait so

long prior to diagnosis.

[PMRpro Ambassador in reply to tytto]

Be grateful it was only 3 months - particularly since the duration of symptoms being over 12 weeks is listed as one criterion - I waited over 5 years ...

[tytto in reply to PMRpro]

I am grateful that the prednisone knocked the pain away within 24 hours......

[maria40 in reply to tytto]

It' s good that you have a diagnosis. Can anything be done for your atrophied nerve?

I'm persevering with my new varifocals and they do seem a great improvement on my previous prescription - I was even able to read subtitles on TV last night. Perhaps it needed a day or so for my eyes to adjust to them.

[tytto in reply to maria40]

unfortunately - Nothing at this time - I t seems to be at a plateau level. Are both of your eyes affected? I also have AMD which has been stable the past 2 years....

[maria40 in reply to tytto]

It seems that my right eye is more affected than the left but the left has very little vision anyway. Yesterday was not such a good day trying to watch my favourite quiz programme 'Only Connect' I struggled to read the words on the grid puzzle. Had to move my chair close to the tv to see properly. But I think my eyes may have been tired after too long on the laptop.

Hope you can find some help for yours soon.