What to do about coming of Pred just before a holiday aboad.

[Fetlar73]

thank goodness this site exists. I am on 1. 50 mg of Prednisolone from 15 Mg. Since Sept./Oct. 2021 . All has gone well I still have aches in arms and legs but liveable. I Started 1.50 mg. five days ago, feeling no difference to before the taper.

i am going on holiday to Portugal for almost three weeks starting 6th March. I have never heard from my GP since my diagnoses so I phoned him and asked for a blood test or tests to see if my adrenal glands were coming to life. He said that there was no point in testing as people can over test and get wrong results. I then asked if it was sensible to taper from 2mg to 1,50mg. Instead of taper one whole mg. He laughed and said “No”.

as I no longer take Alendrotnic acid, due six months ago to being told I required a tooth extraction. Which in the event never happened . Doctor said there was no point in me having another Dexa scan which I paid or myself a year ago. I want to keep an eye on my bones. GP a said it was a waste of money I should have one done every three years.

I would like your opinion on these comments, and I admit he may be correct at least according to NICE guidelines. I am feeling unsure about tapering less than 1mg a day before my holiday. Although I could be off Pred just before my holidy But when away if I have a flare up what should I do. I am taking extra Pred with me so that I can increase the amount if required. But to how much? Do sick day rules apply?

After the phone call with GP I was left just being told to keep on reducing, no other advice.. am I over anxious or should I be asking GP other appropriate questions.

Thank you so much for being here for us all.

[PMRpro Ambassador]

Don't think he and I would get on too well! "Overtesting and getting wrong results" my foot! He sounds decidedly lacking in empathy and a bit on the lazy side. I hope I am misjudging him. Unfortunately, NICE guidelines all too often do not fit with reality.

If you are currently on 1.5mg pred you can't assume you will be off pred before your holiday! 1mg can be plenty to keep low disease activity PMR under wraps but even going to 1/2mg could allow inflammation to build up again and symptoms to return, The smaller the step down while tapering the more likely it is to succeed and you not to find it very uncomfortable. You are also more likely to notice the PMR is still active and building up again.

[piglette]

I think reducing to zero by March is pushing it, particularly if you are having minor aches and pains now. I might reduce 0.5mg and see how things go. I can have a Dexascan every three years on the NHS. I would have thought yearly is probably not necessary if everything was OK last time.

[Fetlar73 in reply to piglette]

.well I was thinking if I do as my GP says I would reduce by 1mg this month and then 1mg in Feb. Then in March I would be down to zero. Hence my email. I have always had aches and pains but nothing like the pain before I took Pred. But I just keep reducing by 1mg every 4-6 weeks. Mostly four weeks.as I get to the end, I am becoming nervous. Hence I have reduced by 1/2 mg this week. Thank you for your advice I found it reassuring. All the replies are so helpful. I shall now take the tapering slower . Thank you.

[piglette in reply to Fetlar73]

Remember 1mg reduction from say 10mg to 9mg is ten percent reduction, 1mg from 2mg to 1mg is fifty per cent reduction. If the aches and pains have been the same all along that is fine, sadly not all of us are lucky enough for the steroids to help one hundred per cent with the pain. If the pains are getting worse than before then you should stop reducing for a while.

[Fetlar73 in reply to piglette]

thanks piglets that makes perfect sense but when I mentioned cutting the tablet in half that’s when my GP laughed and then said “No”. Very confusing but I have decided to take the slow route.

[piglette in reply to Fetlar73]

Do you have enteric coated tablets that cannot be cut or do you have the white ones?

[Fetlar73 in reply to piglette]

the white ones. I have a tablet cutter, or whatever it is called.

[piglette in reply to Fetlar73]

I wonder why your doctor made that remark in that case???

[PMRpro Ambassador in reply to piglette]

Probably because they think 1mg is a negligible amount anyway so why want to take even less ...

[PMRpro Ambassador in reply to Fetlar73]

Have they ever walked this path? Have they tried tapering after a long time on pred? When they have - THEN they can lecture and laugh at us.

[piglette in reply to PMRpro]

Soooo true

[Egunon]

My rheumatologist says “never taper befor a holiday, your vacation, or my vacation”.

[Fetlar73 in reply to Egunon]

sounds like a friendly doctor, good advice I guess.

[Egunon in reply to Fetlar73]

He is friendly, but above all wise.

[DorsetLady PMRGCAuk volunteer in reply to Egunon]

So do I…and never did!

[PMRpro Ambassador in reply to Egunon]

Sensible - shame there aren't more like them!!!

[Purpleazalia]

Your Dr doesn't sound like a 'people person'! Have you had any symptoms to indicate that your adrenal glands are struggling to do their work? If you have, perhaps explaining those to him would encourage him to test you.

I wouldn't reduce the steroids just before a holiday, nor for a couple of weeks after I came back, to make sure all was okay before reducing again.

The FAQs have information about what to do if you have a flare - increase your dose by 5mg per day for 5-10 days, then come back down to the dose just above the one you were on when the flare started.

healthunlocked.com/pmrgcauk...

[Fetlar73 in reply to Purpleazalia]

thanks for all your info. I feel I now have a plan

[GrandmaPirate]

I recommend you not to decrease the pred now and I agree with your GP that tapering now is not a good idea. The tests are another issue. But if you want to enjoy your trip abroad take enough pred with you and stay at the level you felt OK. My rheumy always gives that advice whether it is before a trip abroad, a vacccination or any other event that may have impact on my biochemical and mental status.

[Pixix]

Interesting…my GP’s advice (I have other medical issues causing trouble right now) was that if I want to try to continue to reduce right now, try just half mg per month. Some doctors believe in it !!

[Fetlar73 in reply to Pixix]

Thanks. It is good to hear that some doctors approve this method. I am not used to going against doctors advice, but he actually laughed at my suggestion. Have had same GP for thirty years then he retired. My present GP always sounds tired. Poor man. Thanks for your encouragement.

[Pixix in reply to Fetlar73]

I think they are all worn out, & nothing gets any easier for them! My blood tests were cancelled last week & previous due to nurses off with Covid, & will hopefully go ahead Tuesday, therefore one receptionist spent many hours trying to contact all patients & move their appointments in a system which is completely full! It’s the other way round here, my doctor tells me I’m trying to reduce too fast, most of the time!! S x

[Fetlar73 in reply to Pixix]

I must say that our GP receptionist is very helpful and cheerful. Which is something I never thought I would say.

[PMRpro Ambassador in reply to Fetlar73]

Probably the best PMR rheumy in the UK approves of it - and used it in a study

[Fetlar73 in reply to PMRpro]

who is the best rheum in the country and do you happen to know where I can read his paper on reducing?

[PMRpro Ambassador in reply to Fetlar73]

She - Prof Sarah Mackie in Leeds. Not sure where the article is - though jinasc has quoted it a few times but she is a bit tied up at present so is unlikely to be around just now.

[Flivoless]

Personally I wouldn't reduce at all until after the holiday, especially if I still had some aches and pains.

[Exflex]

When tapering I use percentages as a guide. Currently tapering from 2mg to 1.75mg over a period of 5 weeks. That’s a 12.5% change and if queried by my GP I would point out it exceeds the 10% guideline.

Practically speaking, I see 0.25mg as the smallest increment so will lengthen the tapering period as I reduce further, eg using the 7 week taper.

[Theziggy]

Professor Dasgupta likes to keep people on 2 mg for quite a long time - 6 months +

[PMRpro Ambassador in reply to Theziggy]

Actually, I don't think he ever specified a time and his approach is almost certainly in patients who flare when they go lower so it could be even longer. Rod Hughes likes to leave patients at 5mg for up to 9 months (although also less) to let everything catch up

[Sharitone]

Fwiw, I reduce by 1/8 mg at a time, achievable by quartering 2.5mg tablets and mixing and matching with 1mgs. Then I probably don't stay on each dose so long as other people. It means I get a bit of encouragement more often!

[herdysheep]

The last bit of reducing is often the most difficult. Why risk spoiling your holiday? Go and enjoy it and try again after recovery!

[whitefishbay]

I would just stay doing what you are doing. Portugal will be a boost. Sun. Hurrah.

[Fetlar73 in reply to whitefishbay]

that’s a cheery email. Yes I fantasise about the sun and grilled sardines and sunshine and sunshine…and someone else doing the cooking.

[Fetlar73 in reply to whitefishbay]

thank you whitefishbay and all who replied.so many of you. Decision made no tapering until after the holiday.