scones

[Creamtea]

Hello I am Creamtea and am new to this forum. I was diagnosed with PMR last April and commenced on Prednisolone, the dose of which I have been reducing over the months as per Rheumatologist instructions. I managed to get from 15mg to 6.5 mg in 7 months but pains then came back. Have now been advised to increase to 10mg for 1 week then reduce weekly till am on 7mg. I am now booked for a ct scan...... is this normal.?

I am planning a long haul flight in a month (11hours). Is this a good idea? has anyone got any ideas on how I cope with pain and stiffness.

[SheffieldJane]

Hello Creamtea and welcome! I hope you find the site as valuable as I have,

That was an awfully quick taper I am not really surprised that your body protested. Do make sure your symptoms have properly settled before you taper down again. This disease doesn’t work to a timetable I’m afraid.

The CT Scan is quite usual, unless your doctors have told you differently, they are just making sure that nothing else is going on.

As for long haul flights, well as someone who has the incentive of 4 grandchildren and 2 daughters in Australia, I have done that 23 hour flight 6 times since I have had PMR. We shopped around and found very reasonably priced Business Class flights so much cheaper than others. That really takes the pain out of it. Leg room is a must anyway. Also - I get confused here but I took my Pred at the normal time in the Uk and then again on Australia time in their morning. I ended up with more over the 24 hour period which sustained me. PMRPRO or DorsetLady explain this so much better.

[JulianJ]

Welcome Creamtea , you will get good advice from PMRpro and DorsetLady, they are both very good and knowledgable. If it was me I would spend more than a week at 10mg and then reduce using a well proven taper, more of that will be explained better in due course by the above people.

Good luck in getting back under control and finding a taper that works for you.

[PMRpro Ambassador]

Why a CT scan? Have they said?

To get from 15 to 7mg in 7 months is fine - what's their problem? Or are they good enough to realise this was the sign 7mg is the dose for now?

I do 10-11 hour long haul flights every year or so. I'm small so don't have too much problem with cattle class seat sizes! I travel to the airport the day before I fly and stay in a hotel not too far away. I book airport assistance which is invaluable. And I don't plan anything for the first day or so I arrive - travel early if necessary as we are going to science congresses.

[Telian]

I wouldn't reduce any more until after your holiday. The stress of the flight on your body needs that extra - it wouldn't hurt to take an extra 2mg for the journey then stay at 10mg for the duration of your break.

Like SJ we always travel business class to Oz - couldn't do long haul with OH anyway - that was before my illness. Rheumy advised me not to travel long haul on the high doses 50+.

Have a good trip.

PS: is Scones the cat's name?

[SheffieldJane in reply to Telian]

Er that is a Fox Telian.

[Telian in reply to SheffieldJane]

So it is - must get the other cataract done! Still wondering if it’s called scones.

[bunnymom in reply to Telian]

Me too. A fox in the yard named scones?

[Telian in reply to bunnymom]

I’m sure Creamtea will explain. Creamtea - Scones - they go together.

[PMRpro Ambassador in reply to Telian]

Sc-oh-nes or sc-o-nes? Or even sc-oooo-nes...

[Creamtea in reply to Telian]

no scones and cream tea go together.

The Fox's name is Brer

[DorsetLady PMRGCAuk volunteer]

Special Assistance is a must! So much easier for you, let someone else take the strain!

I always work out what time will elapse between taking your dose at your normal home time (say 8am) and 8am in the country you are flying to. If it’s more than 24hours I’ll take an addition dose or half dose on the flight.

If it’s less, then I usually don’t bother, but a little extra will do you no harm - flying is stressful anyway.

Make sure your medication is in your hand luggage in its original packaging, and take a copy of your prescription as well. I always list any supplements as well. Then I just show both to customs - never had a problem.

As PMRpro says have a free day the day after you get there. Just needs a little planning, and make sure insurance company know about PMR - not usually an issue.

[Koalajane]

I found it easy to get up and walk around on long haul and yes special assistance is a must