Double vision episode

[Lutra2]

Just had one. First since November 2021. Then I was on high dose pred for GCA, coming down. Continued to taper quite successfully, eventually to zero in November 2022. But PMR followed, so went onto 15mg pred, tapering again quite successfully. Down to 5 mg since 6th February. Clearly no blood test availability on a Saturday (without spending hours and hours at Emergency). Would be ideal to get a CRP check before upping the pred dose, but do I self medicate and take more prednisolone? And if so - what dose to go to? Thanks in advance for all advice.

[PMRpro Ambassador]

Since you are in the UK, I suggest you call 111 ask for advice.

Has the double vision cleared now? Have you any other symptoms of GCA? Do you feel unwell, feverish, headache, jaw pain when chewing?

[Lutra2 in reply to PMRpro]

Thanks PMRP. Thankfully the waiting time at ED was less than two hours. DV cleared quickly. No other symptoms. Felt slightly unwell this morning, now also cleared. Coincidentally have a rheumatologist routine appointment on Monday. ED GP took bloods for CRP, and recommended I go to 15mg tomorrow and Monday, then discuss ongoing regime with rheumatologist.

[PMRpro Ambassador in reply to Lutra2]

Golly - what's up? What sport was so important! Sounds a reasonable approach - and you will have the result by Monday

[Lutra2 in reply to PMRpro]

I believe there was some rugby match this afternoon. Only 4 ambulances queuing outside - I know there are often more than twenty.

[PMRpro Ambassador in reply to Lutra2]

Haha! Yes - Scotland- France but I'd have thought you were there earlier than that. Then England - Wales ...

[Grammy80 in reply to Lutra2]

I was so glad to see you went to your emergency department, and they took blood tests. Visual disturbances can have very serious repercussions. It is always worth it to check your markers...happy he upped the pred. I was diagnosed with GCA in 2019 and take Actemra weekly now I am at 3mg of pred; I will drop to two in a month. But, I have no hesitations about doing whatever to maintain the quality of life I have now.💞

[Frewen1 in reply to Grammy80]

I had a GCA relapse a couple of weeks ago… was put up to 40mgs immediately ( from 2mgs ) … now back to 20mgs. Waiting to be given Leflunomide. Good your dv retreated.

[Grammy80 in reply to Frewen1]

It sounds like you are well aware and staying on top of it. I was at 1mg last fall when, because of another health issue, I had to go back to 60 mg. My rheumatologist tapered it, like yourself, by fairly large amounts until 10mg...then he had me decrease by 2.5 every three weeks until I got to 5mg....then by 1mg each month....for me, it is going well. I'm so thankful we have each other...I'd be lost without the support of the forum.💞

[Frewen1 in reply to Grammy80]

It’s so good x

[ChoralG]

I am not sure that I am the best person to give advice, as I have been left somewhat to my own devices regarding prednisolone levels, and I have not experienced GCA, just PMR.

I have experienced double vision once, after a mini stroke, and have since been on anticoagulants, so my issues are a bit muddled up. However, you seem to have had some sensible and helpful answers already, which is good. Sorry not tone more helpful.

[Pjso]

I was diagnosed with GCA and I have been left with double vision when my eyes are tired. I recently had an eye test and the optician explained how my eye muscles have changed as a result of the GCA. I am going back for another eye test this week to confirm his findings as the change in my prescription is significant. He believes that I will require new lens that have a prism. I also have a hospital appointment this week to check my eyes. I do not adjust my steroid dose without the doctor telling me that it is necessary. I am currently on 1mg of Prednisolone daily and have no other symptoms.

[Lutra2 in reply to Pjso]

Interesting. I've had no change in my eyesight, though.