Hi everyone: Been away for a few days with 2 girl... - PMRGCAuk

PMRGCAuk

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Hi everyone

Lilymaerose profile image
10 Replies

Been away for a few days with 2 girl friends and had a great time, lots of laughter, rest and relaxation. I am feeling the best I have felt for a long time, forgotten how important it is to laugh. Also slowly loosing weight.

Still on 20 mgs of preds and trying to go down to 15, thought I'd do 15 and 20 on alternate days and see how I feel.

Anyway I thought I'd add a post on a positive note today for a change hope everyone else is feeling good

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Lilymaerose profile image
Lilymaerose
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10 Replies
piglette profile image
piglette

I am so glad you had a good time, as they say laughter is the best medicine! I tried 20mg and 15mg alternately and found it a bit much, I only was given 5mg tablets. I think I would have done better if I had had 2.5mg tablets at the time and done an alternative 20mg and 17.5mg. Have you got smaller tablets than 5mg?

Lilymaerose profile image
Lilymaerose in reply to piglette

That's a good idea from both of you I will cut them in half but also have 1 msg as well so will see how I go, but really slowly this time

I want to stay feeling like this

piglette profile image
piglette in reply to Lilymaerose

What sort of tablets have you been given? Just 5mg? If you have been given the little red coated ones they cannot be cut, only cut the white uncoated ones. You can get white ones as 1mg which makes life easier when reducing.

PMRpro profile image
PMRproAmbassador in reply to Lilymaerose

If you have 1mg tablets then go 1mg at a time!

Then there's the "Dead slow" approach

healthunlocked.com/pmrgcauk...

By the way - I can no longer send the copies of the reduction plans - but they are available from pmr-gca-northeast.org.uk (I assume using the Contact Us enquiry form)

Lilymaerose profile image
Lilymaerose in reply to PMRpro

I have the uncoated tablets and they cut in half quite easily and also 1 mg tabs

Gone back to 20 mg a day again my arm and shoulder started aching again after 1 day drop to 15 mg

Yes I will try it 1 mg a time

After feeling so well for the first time in ages I am happy to stay where I am at the moment

Already planning next holiday maybe November, me and 2 Girl friends are talking Florida. Can you see any problems with a 10 hour flight on steroids?

PMRpro profile image
PMRproAmbassador in reply to Lilymaerose

Don't be tempted to stick where you are for too long - I know the feeling well bit is almost irresistible!

I have done long haul flights several times and it doesn't bother me at all, neither does the time shift. I take a bit extra pred on the long day travelling out and then take the dose as normal next morning. The short way I just take the normal dose.

When you are doing the planning think hard about how you piece the travel together. I like to stay close to the airport going out so the journey to the airport is as short as possible and don't plan HAVING to do anything the day I arrive. Think about whether you could do something at home - if you couldn't do it here or would struggle it will be that much worse after a long flight and with jet lag.

Not everyone will do as well as I have though - and you might be one. But you won't know until you try. If you are going to the US do make sure your travel insurance will cover you for PMR - because it really wouldn't do if it were to change to GCA and you needed a US doctor it could turn out an expensive trip!

Lilymaerose profile image
Lilymaerose in reply to PMRpro

Hi pmr

Thanks for the advice about travel, we have been chatting about distance so not necessarily to the US

I already have GCA and PMR so no worry about developing that

I would take lots of extra preds with me where ever I go.

that makes sense taking a bit of extra preds before a long flight, and I hadn't considered about time lags.

will let you know what we decide.

Still feeling good and getting more mobile every day.

PMRpro profile image
PMRproAmbassador in reply to Lilymaerose

If you already are dx'd with GCA - what does your travel insurance say? Since they will take any chance to avoid paying out...

Lilymaerose profile image
Lilymaerose in reply to PMRpro

Not tried with travel insurance yet. But would definitely not go without it.

PMRpro profile image
PMRproAmbassador

Good to hear you had a lovely time and feel better for it - it does pay to push yourself a bit for some things.

If you have plain white pred tablets you can cut them to give 2.5mg - pill cutter available from any chemist which makes it pretty easy and it doesn't really matter if it isn't 100% accurate. As piglette says, the swing between 20 and 15 can be a bit much for some people, 20/17.5 for a few days then 17.5 for a few days and then 17.5/15 would be a better way to go about it.

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