GCA/PMR

[Uridge]

Hi I haven't posted for a long time been managing this rotten condition for 7 yrs but I now need some advice. I have reduced to 2.5mg from 40mg with two or three big relapses. I am currently on 2.5mg but experiencing wobbly eyes no double vision and oddly no tenderness or jaw claudication. I took extra pred yesterday and taken 4mg this morning as yet all okay. I also have glaucoma. My question to you wise folks is can you get GCA without tenderness and what is my next move. Thankyou sorry for long message

[DorsetLady PMRGCAuk volunteer]

Think you probably need to book in and get your eyes tested - and contact your GP/Rheumy Dept tomorrow.

This link gives info on urgent cases -

healthunlocked.com/pmrgcauk...

..and this on minor cases -

primaryeyecare.co.uk/servic...

[Uridge in reply to DorsetLady]

Thankyou for your prompt rely I have booked Spec savers for tomorrow Morning but have had no contact with my Rheumy for nearly 5 years so angry with me because I didn't reduce quick enough. Totally misunderstood my issues.

[DorsetLady PMRGCAuk volunteer in reply to Uridge]

Okay - well hopefully S/S can give good advice...and it's not GCA. related. . but they may suggest you need to see eye department at local hospital, or even attend A&E.

Please let us know ...

[Uridge in reply to DorsetLady]

I will keep you posted I feel much better sharing still can't get over that sinking feeling when it goes wrong Thankyou

[PMRpro Ambassador]

Have you got dry eyes? Gritty sort of feeling and copious thin tears rather than nice thick ones that keep your eyes comfortable?

[Uridge in reply to PMRpro]

Hi there definitely tears really most of the time and a gritty feeling but not so often

[PMRpro Ambassador in reply to Uridge]

That can cause all sorts of eye symptoms - get some eye drops from the chemist, optician or some supermarkets have them too. It made a massive difference for me. My eyes were just gritty. didn't even have the tears.

[Uridge in reply to PMRpro]

Thankyou will do that going out later will puck some up.

[Blearyeyed]

So glad you have organised an appointment with Specsavers .It is important to rule out GCA with your history of PMR and other eye changes or ocular migraines caused by eye pressure changes.

I notice you mentioned you have glaucoma.

Are you currently receiving or waiting for treatment from the Eye Department?

If you are , you should contact them to let them know about this change and to request an appointment, as wobbling eyes is a symptom which could mean you need to have treatment sooner.

If you are not under an Opthalmologist, you should ask for the optician to refer you to one at the appointment.

Wobbling eyes , or involuntary movement of the eye , is also known as Nystagmus.

It's usually a condition gained in childhood but there are various reasons that you can acquire Nystagmus in later life , including Glaucoma and eye conditions that cause increased eye pressure.

It is common to get watering eyes as well because of the change in the eye pressure.

If it comes on quite suddenly , or is new symptom, it does need a proper assessment to rule out other possibilities at the Emergency Eye Clinic which you should be able to get an appointment with quickly at your local NHS hospital , especially if you are already under them for Glaucoma.

Point out you feel you have needed to increase your steroids to cope with it , and if the steroid increase made any difference to how often your eyes wobble.

You may find it gets worse at certain times of the day , if your tired , or have been doing activities that cause the eye more activity , like looking at screens or reading.

Until it's sorted out , try and rest with your head laid comfortably and eyes closed using a warm compress.

Have regular breaks between eye activities , reduce screen time , including phones and computers .

When the wobble is effecting your vision , sit down and relax with eyes closed then do slow movements of your eyes from side to side ( with eyes closed then eyes open ) for a couple of minutes. This is called Desensitizing Eye Movement and is basically CBT for the eye , as the wobble is caused most commonly by a change in nerve reactions , and the technique helps to remind your eyes how to behave.

Hope it is sorted out soon.

[Uridge in reply to Blearyeyed]

Thankyou so much for the information very helpful slept badly last night worrying such difficult conditions to deal with. I am shortly off to SS hopefully they can check my pressures most important. I see a Consultant privately for Glaucoma but not due til December so I will be seeing him soon I hope. I will keep you posted all of this support is important. Thanks again

[PMRpro Ambassador in reply to Blearyeyed]

" which you should be able to get an appointment with quickly at your local NHS hospital"

I think that is the purpose of the UES option at certain optometrists - because they have all the equipment required which EDs don't have and by no means all hospitals have an eye department

[Uridge in reply to PMRpro]

Hi just left SS my Glaucoma pressures remain unchanged eyesight still the same. He was most helpful unsure no evidence of damage. Apparently wobbly eyes can be attributed to many eye conditions. But he agreed it was good to increase Pred as z backup will stick at 4mg for a month then try to reduce. I have decided to try to see a Rheumy again after 5yrs. If I can see someone different

Thanks for all support onwards and upwards have a good week.

[herdysheep in reply to Blearyeyed]

The 'cbt' for the eyes is really helpful.. Thank you. I don't have wobbly eyes as such but they can be reluctant to work properly thanks to dry eye/blepharitis.

[Uridge in reply to herdysheep]

Thankyou indeed to lok at that.

[Blearyeyed in reply to herdysheep]

Yes, that was the reason I started it originally as it can also help to stimulate tear production for people with Dry Eye Syndrome. I usually do a little CBT exercise after putting in my drops with closed eyes ( as it also helps reduce the irritation of the eye movements as well as making sure the drops don't just disappear down your cheeks and tearducts!).

Just recently discovered that the Desensitization method I learnt about and taught myself is now available as a complementary therapy in the NHS and can be funded at a private clinic if the service is not available in your local NHS units , which is good to know for the future.

[Uridge in reply to Blearyeyed]

That's really interesting certainly something to look at for the future anything that assists us on our fight.I will certainly look into the desensitisation method will let you know how I get on

Thankyou