Flying with GCA

[DeliaGray]

I was diagnosed with GCA July 7th 2014. I wrote shortly after that asking if flying a long distance is safe for one's eyesight. I would be flying from San Francisco to London. At the time I decided to wait. I have read that Dorset lady has flown to New Zealand recently without ill effect, but that she also is into this 3 years now.

At the start of this after having PMR for a year without being diagnosed, I had 4 ocular migraines within 24 hours. GCA was diagnosed as my ESR and protein levels were extremely high and I was having a lot of head pain. I was immediately put on 80 mg of prednisone which then stopped all the head pain.A couple of months ago I had a fifth episode of ocular migraine having reduced to 10 mg of pred. the prior 3 days. I was in a park a mile form my home walking my dog. After managing to get home without much vision I took another 25 mg of pred and my sight fully returned within an hour. I have had no more episodes. I then raised to 15 mg and have since reduced very slowly to 13. I used to have these ocular migraines since 17 but had had none for about 20 years. I am now almost 77. I am scared to fly in case the stress will cause them to return, or worse still that I will lose my sight completely. Any advice would be greatly appreciated. Thank you. Delia.

[PMRpro Ambassador]

This is something only your doctors can answer - noone here has medical qualifications and even if they did remote diagnosis cannot be accurate or reliable.

However - if I understand your post correctly, you have reduced from 80mg pred to 10mg in well under a year. If that is so - and I do realise I may have totally misunderstood you - then I would suggest that is simply too quickly for someone with visual symptoms of GCA.

Discuss it with your doctors - I would have thought that if your pred were raised to more like 30 mg to cover your flight it would possibly be OK - but you don't want an episode like the one you describe during a flight do you?

[DorsetLady PMRGCAuk volunteer]

Hi Delia, DL here, as you rightly said I flew UK to NZ recently with no problems. However I had been on Pred. for over two and a half years, starting at 80mgs like you, but reducing much slower, which, I think is the key here. Your reduction from 80 to 10mgs over less than 9 months seems too quick, to me anyway.

If you are okay on 13mg then suggest you stay at that level for a few weeks, or even months to stabilise everything. Also, you should see someone (sorry about the pun) about your eye problems, to ascertain if they are GCA specific, you say you had them earlier in life.

My Ophthamologist told me there were no problems with flying that would affect the GCA, other than getting stressed about it!

Once I'd lost my right eye, due to the optic nerve being starved of blood, I haven't had any other visual disturbances, so I can't really advise on your problems, sorry. And as we always says, talk to your doctor. Good luck, DL

[DeliaGray in reply to DorsetLady]

Thank you for your advice. My Drs. have said that flying is no problem, but then at the same time I have been told by my rheumatologist to follow the instructions of the British Drs. regarding the reduction of prednisone as they have no other cases of GCA and seem to know little about it and treat the condition as not that serious.

[annettepackham]

Hi Delia,I was in a similar position a couple of weeks ago, I was diagnosed with GCA 9 weeks ago following a horrendous headache and loss of vision, which turned out to be a GCA induced stroke. I have for 8 weeks been on Predinosolone. I managed to take a flight to New York, 2 weeks ago, without any problem, I monitored my blood pressure and had no ill effects, actually the worst aspect was having to stand around at the US end for their passport checks! I realise that the flight for California is a good deal longer - it was only 7.5 hrs for me! If you decide to go good luck and take the choice of a wheelchair they have them available and will speed up your standing around!

Take care, annette

[DeliaGray in reply to annettepackham]

Thank you Annette, that is very encouraging. I have had a great offer from Cunard re sailing to England, and my grand-daughter lives in Washington DC. I may fly to her, and then to New York and sail over if I am able to get a ship back again. My brother is ill in England, and I would really like to get over there to be with him a while.

GCA is a weird disease, and not to be taken lightly I am learning, but I admire you for taking the trip to New York so short a time after being diagnosed. I am so sorry that you had the stroke. Stress brings on these ocular migraines, and I am trying not to be stressed, but easier said than donein this crazy world we live in. I won't let it stop me either from enjoying the rest of my life. I am 77 and still able to work full time. I wish you well and stay positive, it is the only way to go.!!

[annettepackham in reply to DeliaGray]

I hope all goes well, I was actually fortunate the the stroke only affected my peripheral vision and not any other drastic physical symptoms just weakness generally! I was concerned about flying and asked for advice on here as well, it is so amazing to have this available isnt it

[DeliaGray in reply to annettepackham]

It sure is. have fun.!

[DorsetLady PMRGCAuk volunteer in reply to DeliaGray]

Hi again Delia,

Would totally agree with Annette, take assistance at the airport (I do for arthritic knee), it makes life so much easier for you. I was a bit reluctant and embarrassed 1st time, but now I take it whenever I fly. You can also get assistance on your cruise. DL

[DeliaGray in reply to DorsetLady]

Thank you DL. I love reading your posts, you are so upbeat. Haven't decided if I should sail yet as even with a deal I have to pay more for traveling as a single. I need to find me a good man to travel with me.!!!! Lots of luck on that one.!

[DorsetLady PMRGCAuk volunteer in reply to DeliaGray]

Thank you Delia. If you find a good man, perhaps you could see if he has a friend!

[DeliaGray in reply to DorsetLady]

Definately and likewise.!