Eyes

[prunus]

Can I write to jinasc, primarose, marijo and Sho-Sho who have all been kind enough to share their experiences with me? My own experience goes back six years. After nine days in hospital GCA was diagnosed with a CRP of 452. I finally came off predisolone two years later. Remission lasted two years. Then I lost vision five times in four days and had unbearable pain in myhead so taken back to AandE. Since then I had got down to 0.5mg of predisolone. But for the last week have been back on 1mg because I've been having faulty vision again from time to time. Our experiences are all different.

[SuziCutie]

O dear poor you. I too have GCA!PMR since Dec 17. Controlled well with Pred . Down to 10mg now from 60.

Vision blurred at times and double vision too! So had emergency eye appointment at hospital. Told all ok but having MRI to be sure. Seems problem due to Pred. Seems all problems due to Pred!!!

But we need it so must endure.

So we battle on with tapering very slowly. All the best with your journey 😁😁

[jinasc in reply to SuziCutie]

If you were started on 60mg Dec 17 and are now down to 10mg.......... which is a very fast reduction and your vision is blurred at times and double vision, you are not on enough pred.

The vision problem is not down to pred, it is down to too little pred.

In my humble opinion as I am not medically trained at all, and I would not be sitting back and waiting for an MRI either. I would be shouting at everyone.

I started on 60mg and it took me six months to get down to 20mg and then a 'flare', back up to 60 mg for a month or two, then down another six months to get down to 20mg. Then by that time had come across Ragnar and Eileen and knew enough not to come down by more than 10% at a time and take a month to reduce that amount.

[jinasc]

Since then I had got down to 0.5mg of predisolone. But for the last week have been back on 1mg because I've been having faulty vision again from time to time

1mg is obviously not enough to control the inflammation and you need to get cracking.

The dose should be high enough to stop all vision symptoms in their tracks.

As you are still experiencing fault vision then that dose of pred you are on is not enough.

You need to see a Consultant today, and if that means another trip to A&E so be it, your vision is precious and if it goes, it has gone. No getting it back.

Take someone with you and insist.................

[Primarose]

Oh gracious me that is so worrying prunus. Have you been thoroughly check out at the eye hospital. I you haven't you must see them, I can't really see that 1mg will help with your vision.

I'm sure that Dorset will be along to advise later.

I can't say that I have had any eye problems, only ocular hypertension, flashing lights and spiders.

When you say faulty vision, is your vision blurry?

[DorsetLady PMRGCAuk volunteer]

Hi,

As others have said 1mg is not enough if your sight is in danger. You need to see a specialist and pronto!

As I said many times, the sight in one eye was lost within 4 days following onset of blurriness. As you say we are all different, and it may be something other than GCA - but loss of eyesight is not something to be messed with!

Please get it checked.

[prunus in reply to DorsetLady]

My problem is I also can suffer from migraine with aura and I'm not sure which is which. Having said that I did not have any sight problems until May of this year and I think it was somewhere then that problems started. Since then what happens is I get a space in my vision with nothing there which lasts about 20minutes. I do have a disabled husband. I do find it difficult to know what is happening in my head.

[DorsetLady PMRGCAuk volunteer in reply to prunus]

I know exactly where you are coming from, I was a carer for my late husband, and if you have other ‘head” issues it’s very difficult to differentiate between the symptoms.

But somehow you do need to get some answers as to what is really happening, however difficult that may be. Have you got a friend or family member that can go to doctors/hospital with you if hubby is unable to help fight your corner? You shouldn’t have to, but sometimes it’s necessary to go mob-handed!

If the problem is GCA and you end up losing sight, there is very little chance of it returning, I know I’ve got the T-shirt.

[prunus in reply to DorsetLady]

In May we should have had a week in Lake Garda. Instead of that he was in hospital with a heart attack and sepsis.

[Purplecrow]

Prunus, please heed the words of Dorset Lady, and do not try to sort your vision issues out by yourself.

In the past, I have experienced the vision events with migraine...however, with PMR or GCA, I would not sit around wondering whether the event was GCA or migraine!! ,

Get to the A&E and get answers from those who know!!

Your vision is at risk.

Kind regards, Jerri

[prunus in reply to Purplecrow]

Thanks for the advice, I always put off going to the Dr's.

[Marijo1951]

I can only second the others. go to A&E of the hospital where you're being treated for GCA, give your hospital number as receptionists are inclined to tell you to go away and take some paracetemol if you mention a headache ( I know, it happened to me once). If there's any chance of a flare up of GCA, you must be seen urgently.

[prunus in reply to Marijo1951]

Many thanks for your concern.