A worrying few days!: Last Thursday I had a very... - PMRGCAuk

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A worrying few days!

Janann25 profile image
5 Replies

Last Thursday I had a very bad headache - only occasionally get these and they only last a day. But this time it was still there on Friday Morning and it was unusual enough for me to check my vision and I discovered that the vision in the left eye had deteriorated quite a lot. I rang my optician but they didn’t have any appointments for that day but referred me to a local community service who will try to get an appointment with another optician. Unfortunately no appointments were available so I was advised to visit the emergency eye clinic at our local hospital the following morning. In the meantime I took 40mg of Pred in the hopes that this would give me some protection before I knew exactly what was happening. The eye clinic turned out to be by appointment only but I didn’t want to wait any longer than necessary so took myself to A&E, which was the start of very good service.

I had bloods taken which showed only slightly raised CRP (8) and everything else OK., but of course the emergency doctor didn’t have the facilities to make a decision about the possibility of GCA. I had an eye examination and the doctor decided I needed to by seen by the eye clinic the following morning and, as a precaution, gave me 60mg Pred.

So, on the Sunday morning I was seen by a young but thorough doctor who examined my eyes before and after dilation, then I had several scans. He wasn’t sure what exactly was happening - my optic nerve was swollen which could have been related to a severe bleed I had in that eye about 10 years ago and which could caused me to go blind. He also thought that the vitreous substance in the eye was pulling away from the retina and, of course there was still the risk of GCA. So I had another 60mg of Pred and was slotted in as an emergency with the consultant the following morning.

Again, the consultant checked everything, then was able to reassure me that there was no GCA, nor was there a problem with the retina or the optic nerve. What has actually happened is that the lens which was inserted when I had cataract surgery has crazed and is restricting my vision. Of course, because I have such good vision in my right eye, it wasn’t until I checked my vision that I became aware of this and, fortunately laser treatment will help to restore it. He would have liked to do the treatment there and then but, because I’d just been slotted in before his actual clinic started - and I was with him for about 40 minutes without any indication that I was wasting his time - I will be sent for asap to have this done. Again, because I still have good vision, I can still drive!

I apologise for this long post but, first of all I wanted to share my “good” news and I also wanted the opportunity to highlight the fact that, when our NHS is good, it’s VERY good. And, as an aside, when we were talking, the consultant commented on how much knowledge I had of the condition, to which I assured him that it was due to the help and advice from this lovely forum!

Jan

PS. The only downside to this is the fact that I have to take a couple of weeks to taper back to my current 6mg per day - but a small price to pay for knowing I can still see!!

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Janann25 profile image
Janann25
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5 Replies
PMRpro profile image
PMRproAmbassador

How many days did you take the 60mg for? If it really was just a couple of days - no need to taper.

Don't apologise for a long post - far better to tell the whole story than just half of it and people don't get important information. And yes - when it is good, the NHS is very good. Just when it is bad it can be horrid!!! But when it is needed in the ED it is on the ball.

Janann25 profile image
Janann25 in reply to PMRpro

I started last Friday and was told to start tapering when I saw the consultant on Monday. I’d already taken 60mg in that day so a total of 4 days. Yesterday I was told to reduce to 40 for 2 days but I haven’t yet taken today’s. According to the “plan” he gave me, I then had to reduce to 20mg for 2 days, then 15mg for 2 days, then 10mg for 2 days, then 7.5 for 2 days then back to 6mg on 22/4/22. What are your thoughts on this?

PMRpro profile image
PMRproAmbassador in reply to Janann25

It's fair enough - it is up to you though, you don't NEED to taper after only 4 days and if it were me and I didn't need the high doses, I drop faster, You haven't been at a high dose long enough to upset the adrenal side of things so it is just the effect of the changing pred dose on you. My daughter often gets a few days of high dose and stop for asthma.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Janann25

Might be able to do it a bit quicker, but its how brave you feel...it's only 10 days in all...

Good to hear the service you got though..

Janann25 profile image
Janann25 in reply to DorsetLady

Thank you for your reply. As I’ve just replied to PMRpro, I’ll compromise and taper daily - and see how it goes. And yes, it’s good to know our NHS can still do a good job. And they could do an even better one if they had the funding and staff which they really need.

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