Travel when reducing dose of Prednisolene

[Chia123]

Hi everyone. This is my first post.I was diagnosed on May 2nd with GCA. I'd had PMA since mid January 2019 but the Dr said it was wear and tear as part of the ageing process despite being fit, healthy and extremely active until then. Got the symptoms of GCA starting 24th of April. Woke up with a worse headache than usual, tender skull and prominent temporal arteries. Went to the Drs 3 days later and was asked to do a blood test. 3 days later (my 68th birthday!) I had all the symptoms of flu with a very sore jaw and a ferocious headache. Dosing myself with parecetamol every 6 hours so could function. Woke up 3 days later with a swollen face. Cheek bones had disappeared -decided to give having my passport photographs taken for renewal a miss- did blood test that day, contacted by surgery the next to come in the following day. Urgent priority referral made that day. ESR 63 and SED raised. I was started on 40mg of Prednisolene. That was 2nd of May. My urgent priority referral is the 17th of June which is on Monday. My biggest concern is that my eldest daughter is due to have her first baby in July and she is having the baby in Greece. She is there now. The arrangement is that I go for the whole of July. If my dose is decreased, as I understand it should be ASAP, will she need to knowabout the GCA? Will I need to be monitored and finally does air travel have adverse effects on people with GCA? Don't know whether this is an overlong post. Apologies if so.

[PMRpro Ambassador]

Personally I don't count the words - you write what you need to write and I'd rather know more than less!

"If my dose is decreased, as I understand it should be ASAP"

I do hope not - although I suppose it depends how you depend asap! 40mg is the lowest starting dose for GCA, many people need more to get the inflammation under control and that is what is most important. Reducing the dose too soon or too fast is likely to lead to flares in the symptoms. GCA is a chronic illness and you will need pred for many months, possibly years. This is an article about managing PMR and GCA and there is a typical reduction scheme there on p346 which they hase on 2 years - that is the low end of the scale:

rcpe.ac.uk/sites/default/fi...

They start at 60mg, but you really need a month on 40 and a month on 30 at the very least - and that depends on whether your symptoms are well controlled and your blood markers are falling - I assume your GP has checked them in the meantime?

DorsetLady is our GCA person - she has all the t-shirts! I'll leave it to her to pass on her wisdom.

[Chia123 in reply to PMRpro]

Thanks for your reply. I assumed I was started on 40mg because I am very slight. I was started on the steroids on the 2nd of May and a review of the medication booked in for the 3rd of June. I assumed it was with the Dr but it was the pharmacist. When I told her I hadn't had my appointment with the consultant yet , she said I needed an appointment with the Dr and made one that afternoon. When I told him all my symptoms had been effectively addressed, he suggested I cut down to 20mg. I said I had an exam at the end of the week and wanted to feel fit enough for it and also felt I should have my consultant's appointment first. I also hadn't had any further blood tests since the 30th of April.

[PMRpro Ambassador in reply to Chia123]

Dropping from 40 to 20 after amonth is a bit harsh! I'd definitely go via 30 - and maybe in smaller steps if that doesn't work!

[DorsetLady PMRGCAuk volunteer]

Hi,

Air travel for recently diagnosed GCA patients is not really recommended, so you will need to check with your Rheumatologist if he happy for you to fly.

The dose should not be reduced ASAP - where have you got that information from? True you are given a high dose initially to control the accumulated inflammation, but you should stay on that dose for a month, and then decrease slowly to find the dose you need on a daily basis.

PMR is not wear and tear, it’s an auto immune illness.

Your daughter doesn’t need to be aware of GCA - it’s not contagious - but it can be debilitating so you need to be sure you are fit enough to cope with a new baby and mum! However your travel insurance does need to be aware - although usually it’s not a problem.

You might like to have a look at attached before you see your Rheumy on Monday -

healthunlocked.com/pmrgcauk...

[Chia123 in reply to DorsetLady]

Thanks for your reply. I know the seriousness of PMR. I should have challenged Dr when he concluded it was wear and tear. At the practice they don't have time to look at your history. Last time I was ill, apart from pregnancy, was 1983.

[SnazzyD]

By July you’ll probably be still on a fairly hefty dose of Pred. If you are cleared medically to travel and your insurance provider is covering you, it might be advisable to tell those around your daughter if not your daughter as well. GCA can make you feel pretty fatigued and Pred has its effects too that do accumulate a bit. You may find it tricky to pretend all is normal and I think you’ll have a more enjoyable time if you and others know the score so nobody worries if you have to have rests. GCA is serious and if you did require any sort of medical attention others need to know. I hope you can travel and share the joyous time.

[Chia123 in reply to SnazzyD]

Thanks. Good advice!

[SheffieldJane]

Life does this to us doesn’t it? - a basket full of joy and terror. Obviously you must be there. Obviously you must take the GCA dose you need and at times of stress- even happy stress, it is more not less that you will need. 40 mgs is a modest start dose, 60 mgs is more usual. Of course your daughter needs to know that thank God this thing was caught and you are safe. You won’t be exactly your old self, actually you are quite ill, but still perfectly able to feel the joy and rise to this once in a lifetime occasion. You will be fine to fly, get clearance from your consultant as others have said, of course, airport assistance would be wise and all the well hydrated, flight socks, precautions, should be taken. Wishing you and your family great happiness. Pace yourself Granny. Sleep when the little one sleeps. This is a time of quiet, peaceful happiness. X

[Chia123 in reply to SheffieldJane]

Thanks. Sound advice.

[alvertta]

In addition to all the advice below, your face is likely going to puff up. And the back of your neck. So you might as well tell your daughter. She will wonder about your appearance.

[Chia123 in reply to alvertta]

Why are they likely to puff up? A reduction in the steroid dose?

[DorsetLady PMRGCAuk volunteer in reply to Chia123]

Steroids are notorious for making your face rounder - and sometimes your neck as well. Not everyone but many! So if someone has seen you for a while it can take them aback!

[alvertta in reply to Chia123]

I have had two people I know NOT recognize me. Scary. I puffed up fast and am staying there. Started at 60 in mid October. On 22 now and no sign of un puffing. Sadly. Avoid mirrors.

[alvertta in reply to Chia123]

I make sure I wear a shirt with a collar or a scarf. Turn up the collar. Look cool ! 😎