Quick question

[Janann25]

I'm sure this has been covered before on this forum but I can't find anything so I'll ask again - sorry!

I was referred urgently to rheumatologist on Monday - no appointment yet - but I've just stayed on my original dose of 15mg Pred with instructions to go to A&E if I have vision problems. So far vision OK - got my fingers crossed as I say that! - but the last couple of days the other symptoms have returned to the point that it's almost as if I've not taken my Pred. Of course, it's the weekend and I can't get to see a doctor until next week so my question is, while my vision stays OK, do I just put up with the pain or should I add. Another 5mg to my dose?

Thank you

[PMRpro Ambassador]

Um, if GCA is suspected an urgent referral in the NHS is not what you want - it is an EMERGENCY appointment. Urgent just means a few weeks earlier than routine! Semantics, semantics! Your GP could/should have rung the hospital and sent you along with a letter - that is what my optician used to do, did't waste time telling the person to go to the GP.

You do have access to Out Of Hours doctors (111) but I do have to say - if it were me, I would try another 5mg. If that doesn't work, use 111 and ask to speak to an OOH doctor.

[Janann25 in reply to PMRpro]

Thank you - You have just confirmed my own thinking so will take the extra dose and act quickly if it gets worse.

[Janann25 in reply to PMRpro]

Quick update - just spent four hours in A&E!! I found I started to get double vision about 1 o' clock with a really severe headache so, rather than try driving myself there (I live on my own) I phoned a friend and she took me. The doctor seemed very knowledgeable and had obviously checked my notes regarding previous eye problems. He seemed certain that this wasn't the start of GCA but part of the symptoms of PMR and felt I would benefit from co-codemol to help the headaches which in turn he felt were causing the double vision. He also said the initial reduction of 2.5mg was too severe (you may remember that, following your advice, I started to reduce by just one mg but still had to go back to 15mg) and said that it may be necessary for me to stay at 15mg some time. So I must take his advice and hope that these symptoms settle down. And, once again, thank you for your help and advice.

[PMRpro Ambassador in reply to Janann25]

Part of the symptoms of PMR???? Possibly - when it may be progressing to GCA! If the co-codamol doesn't work - try my original suggestion.

Like Heron, I do hope he was right.

[Janann25 in reply to PMRpro]

Whoops! I was starting to feel more relaxed after seeing the A&E doctor but after your's and Heron's reactions I'm getting worried again. I will just have to hope things start to improve soon or I shall have to get checked again. Unfortunately, having had rather a lot of experience with the 111 service during my husband's last months, I don't know whether an OOH doctor would be more knowledgeable. I will just have to hope things settle down 🙁

[HeronNS in reply to Janann25]

I think we just want you to remain alert. As PMRpro says, *if* the co-codamol didn't work.... By the way, has it helped? And it is YOUR vision so be a squeaky wheel if you have to be. Hopefully all will be well.

[PMRpro Ambassador in reply to HeronNS]

Exactly...

[Janann25 in reply to PMRpro]

Thanks - I appreciate your concern. I'll keep you up to date.

[Janann25 in reply to HeronNS]

Yes, it's eased a bit so I'll keep my fingers crossed.

[EdithWales in reply to Janann25]

Don't just hope, it's your body and your eyesight. My GP husband does Out of hours as well, he can write a book on GCA but only since I was diagnosed three years ago having been missed by his partner, I was very ill. No eye symptoms but couldn't pull myself up the beds and the headache was unbearable. His whole Practice of 9 GPs

know about it now but it is a rare disease and some never see a case, it's not their fault. Bill diagnosed

one recently and

sent her to A&E and remember OOH doctors only see you once so they don't know you. Any doubts, go to A&E and sit there until you are seen,as PMR Pro says it's an emergency. Good luck.

[HeronNS]

Oh I do hope that doctor was right, but I've never heard of double vision being a symptom of PMR. I'd call that number PMRpro gave you in an earlier post.

[Wbednell]

Don't wait get to a&e soon has you can I was in Poole a&e with my preds being to low they rushed me to consultant first thing he said to me was you are the 2nd one I have had this week she went blind this is what have to beware off I know I lived with GCA for over 13years so don't wait go now

[Janann25]

Thank you all for your comments. As I've said, I spent several hours in A&E yesterday but it was decided it wasn't GCA. However, I still have the double vision so have managed to get a full check up TODAY - they have a cancellation - with my excellent optician and will get off again to A&E if he's not happy. The co-codemol has really helped my headache but I still have double vision. Strangely though, if I cover either of my eyes, the other eye is fine with no double vision. It's as if there's a problem with both eyes working together. I'll write again when I know more. And again, many thanks to you all.

[PMRpro Ambassador in reply to Janann25]

If co-codamol helped the headache it does make it a bit less likely it is GCA as it usually responds to nothing other than high dose pred.

[Janann25]

Back from an hour-long check at my optician and feel more reassured. Apart from the usual check-up, she did a range of specific tests for double vision and was able to tell that this was being caused by badly working muscles, which was good news because GCA affects the nerves - apparently it makes the nerves swollen and mine weren't. I also had several scans and images taken of the back of the eye and all appeared OK. I now have to have a special prism inserted into the lens of my glasses but, in the meantime, I have a "sticker" fixed to the lens which mimics the effect of the prism. I have to monitor this for 10 days or so before I go to the expense of new glasses. So I now feel that I've had a better check than I did at A&E yesterday - and definitely better than I would have had today because our hospital doesn't have an eye doctor on duty over the weekend!!

Incidentally, double vision can sometimes be caused by stress - and I can safely say I've been VERY stressed lately!

And finally, I had to phone the hospital booking system today to make an appointment for an urgent referral to a rheumatologist - the first appointment is the beginning of OCTOBER and that's considered an urgent appointment - there are no words really 😟

Thank you all for your advice - I really do not know how I would get through this without you.

Jan

[PMRpro Ambassador in reply to Janann25]

Urgent is just earlier than routine. If routine waits are 18 weeks, then urgent might get you seen in 12 weeks. If you need to be seen quickly - the word is EMERGENCY. Preferably used by the GP in a phone call to the relevant department. Some hospitals have a fast-track system for GCA, much the same as for TIA patients for the stroke clinic.

Unfortunately, while most other staff in the NHS are aware of this - it seems the average GP isn't. And I first posted about this on another forums AT LEAST 4 years ago.