GCA sufferer?

[charlie444]

Me

As not very good with technology I'm not sure if this will reach you!

Am very impressed by the quality and variety of posts I have read.

It has helped me to find that there are many others in the state of confusion that I find myself in!

Does not make me feel so alone and I am ready to try some of the solutions discovered by others. So many scare stories. Have not been feeling great on 7 pred..perhaps I am having a 'flare' which is a new

term for me so I am upping my dose to 10 to see what happens.

I have not seen many comments about the effect on eyesight of

undiagnosed GCA as that is one of the problems that worries me most .

Though CCA said to be quiet now I am still having deterioration in sight

and a lot of discomfort round eyes ....twitching in cheeks and tender at temples. Using celluvisc drops.

Still have tight jaw line. And my dentist says teeth ok!

Sometimes feel not bad but other times exhausted !,

Sorry to ba moaner.

Charlie 444

a day ago

[PMRpro Ambassador]

Yes - technopobe or not, you got here!

Have you seen your optometrist? Pred has some side effects that affect eyes and they should be checked for regularly.

And might you have back/neck muscle problems? Tight jaw feelings have many causes.

[MhairiP]

We're receiving you loud & clear, charlie444! I wonder if you're getting our replies?

I agree - PMA can be very confusing and this forum is so helpful. You're not alone!

[Marijo1951]

If you are really concerned I recommend you go to A&E. If you are being treated by a consultant rather than just your GP, go to the one at his/her hospital as they will have your records. I flared badly twice and went to A&E and was treated very seriously including eye tests.

[Karendoz205]

I've had GCA for 2 1/2 years so far. Terrible problems with rheumatology and GP's. I have a new Dr now and he has listened to everything I've said and I've emergency appointments for everything. He's absolutely disgusted with how I've been treated. I have had problems with my eyes since being diagnosed. Just this last year terrific headaches and pain behind the eyes affecting my face my jaw my head. I've just come back from the hospital . Eye department. I have narrow angle eye closure which has resulted in pressure building up behind my eyes. I'm having surgery in the next couple of weeks. If pain increases then straight to a&e. If you feel something isn't right with your eyes ask your Dr for a referral to the eye clinic. You have to much to lose if there is a problem.

Take care.

Karen

[Grants148]

WelcomeCharlie,you did reach us,you are not a moaner,sounds as though you are suffering quite a bit ,especially with your eyes.keep posting and let us know how you are ,we all have good and bad days and the others on this forum understand and you will find good information and advice posted on here from others who are coping with PMR or GCA .

[Monkeymate]

Hi Charlie you’re not moaning , an definitely not alone ,I have for 7months ish suffered your same symptoms ,an when my head burns ....wow I also feel the pulling behind my eyes with distorted vision .an IT IS very scary .so I know I can’t change wot is an what’s going to be, so I try to change how I except what’s going to be .im on 40 preds p day an blood pressure plus many other meds as I have lupas aps ancsmall vessel disease on the brain so have had 3 ministrokes , so my friend I hear you and know first hand the fear an your pain , please give your self time be kind to you .ive only only just connected to this forum an it’s true there’s strength in no’s 😁 so Moan on Charlie WE here you .

[Monkeymate]

Me again look out for Dorset lady an promo you’ll love them a mindful of information ok