Small increase - great improvement

[maria40]

Following a scare over a possible GCA flare last week, I increased my prednisolone dose from 9 - 10mg - my GP had left this up to me - and I'm feeling much better than I have for some time. Can 1mg really make such a difference? The flare symptoms have gone and I am less stiff than I have been for a while, My question is whether 10mg is too high for a maintenance dose. I raised the question of possible reduced absorption - all my pred is enteric coated - but the GP was sceptical. What do others think?

[DorsetLady PMRGCAuk volunteer]

Hi Maria,

Yes 1mg can and does make a difference, in fact many find that 0.5mg does!

The absorption of your tablets may be an issue, most people I think (I’m not the expert on this) get about 90% from their medication, but some only get 50% or so - if you’re in the latter group then you struggle.

If your body needs 10mg at the moment that what it needs, but that doesn’t necessarily mean it will require that next month, or the month after.

Next time you reduce try only a 0.5mg reduction, and maybe use a slow tapering plan - if you don’t already.

Here’s one I made earlier - healthunlocked.com/pmrgcauk...

[maria40 in reply to DorsetLady]

Thanks DL . I was using your plan and did well until first full week of nine mg , then this apparent GCA flare . Now on my 4th day of 10 mg and have just walked into town - 25 mins -- enjoyed walking around and still feel human. I think I will stay on this dose for four weeks at least and if I'm not gaining too much weight may stay put there. As I have taken prednisolone for 18 years now , much of it at 5mg below which I never been able to go this can't add too much to my already huge cumulative intake.

[PMRpro Ambassador in reply to maria40]

All doses below about 8mg are what are called physiological - equivalent to less than the body makes daily and which is essential to life. Just like your central heating boiler doesn't produce more heat when the room is warm enough due to a wood burner being on, your adrenal glands don't produce more cortisol when there is already enough corticosteroid present in the body - it doesn't care whether it is natural or artificial!

I've had PMR for 14 years - and every so often I have a flare that necessitates a return to a higher dose. I suspect it is typical of refractory PMR and I am far from sure there is an easy answer.

[SheffieldJane]

Hi 14 years is a long time to be at these sort of doses. I know that PMRPro has had PMR for about that length of time and she may well have some valuable advice to give you. I know she constantly manages her condition to achieve her optimum dose - which 10 mgs is for you, clearly. She may have something to add about the absorption issue.

Have you ever tried Pred that is not enteric coated? Obviously you would have to line your stomach first. I successfully use Greek Yoghurt and a little honey. I just wondered if that was a factor. Good luck.

[maria40 in reply to SheffieldJane]

It's actually 18 years since I was diagnosed with PMR with GCA coming along 7 years ago. I was on uncoated for quite a while but my stomach began to give me problems, omprezole gave me nausea so I requested enteric coated which I now have at 1, 2.5 and 5mg. I did try yogurt, porage and every other natural stomach liner but to no avail and stomach twinges could almost be timed from when I took the prednisolone. I shan't be too concerned about staying at 10mg for a while if it does the trick and restores me to normality which it seems to have done today.

[Inger62 in reply to SheffieldJane]

Hi ! I have a sandwich, coffee ANS swallow those white bitter ugh pills with ordinary zero-sugar yoghurt. I guess the white pills are uncoated, right? After nearly 5 mths of 15/12,5 mg Pred, I have no tummyaches at all, no indigestion issues. Is this normal? Is my stomach lined with leather? Or is it simply early days or pure luck? I don't know how I would handle constant tummy pain, nausea, aso.... Fingers crossed. I dont normalt eat yougurt, so thank you for giving me the yougurt-idea back in october! Oh yes, and the yougurt helps the slidingdown process. I find the pills hald and dry and bitter to swallow.. Happy Sunday !

[PMRpro Ambassador]

I once wrote a post about "what a difference 1/2mg makes" - and that was 1/2mg over 2 days not one!

I assume you have been on pred for PMR for the 17 years? It was 4 years before I got below about 9mg/day without trouble and that was after a horrendous few weeks in hospital during which time I had been given infusions of high dose steroids. Apart from the crutches for something else I almost danced out! Since then I have got down to below 5mg, 4mg was OK, 3.5mg was not but it was fatigue not PMR. I went back to 5mg but a couple of months later I had a strange flare and was back to 15mg. Now I'm back to 8mg - but that has taken 2 years.

There is a lady who goes to the Chertsey group who has been on well above 10mg pred for years too, mid-teens I think. Rod Hughes has said "refractory PMR". About 5% of us come into that category. I think she has tried other stuff but they all make her feel unwell - and really, in your late 70s I don't think there is any point in that.

The 50% bit DL mentioned: overall we absorb somewhere between 50 and 90% of the dose, doctors tend to think in terms of the average of 70% and that is probably what the majority absorb, 50 and 90 are the outliers. Those of us who are at the 50% end do need a higher dose of pred than anyone else.

The enteric coated pred IS a consideration - a very few people DON'T absorb it as well. Strange your doctor was sceptical - it is usually their excuse for not letting people have it! It might be worth asking to try the other stuff to see if it helps - you can always go back. But Medrol (methyl prednisolone) is supposed to be better, more antiinflammatory. For me it gave me side effects (beard, mad skin and hair, weight gain, muscle myopathy) and even 20mg did almost nothing for the pain and stiffness. Prednisolone in the UK was fine, both sorts. Prednisone as Lodotra now is also brilliant. The overnight dosing is great but it isn't an option in the UK except privately.

[maria40 in reply to PMRpro]

Thank you for your very helpful reply. As I replied to DL I've been taking prednisolone for so long now my cumulative dose must anyway be huge and, as I shall be 78 in April, I'm really not going to worry too much unless I start to get nasty side effects again. I've been able to take more exercise by walking today than I have for ages, so I hope that goes some way to offset the weight gain and do good in other ways.

Bought myself a snazzy new hat to celebrate - forecast snow was the excuse!

[Inger62 in reply to PMRpro]

Morning! Thank you for so much important info on med, and earlier on tendons etc. There' s hardly any info here in Norway. And if you want a rheumy you have to pay for it yourself (starting prize around 400 £), unless you're very young or very old and sick, the specalists in the public health system wont have you. Strange for one of the wealthiest welfare states in the world, isn't it? I get it you are in good hands in Italy, and I would also like to add that I do hope that you will get well one day, after all these years of so many bumps in the road- from quite an early age. Ps: You used to be a skier, didn't you? Have you had a peek at the OG from Pyongyang? Well, not be a crazy patriot or anything, but Mari Bjørgen is now the most-winning olympic athlete ever! Go girl! ⛷

[PMRpro Ambassador in reply to Inger62]

Have I had a peek? I have no idea what I shall do now after 2 weeks of the TV being on whichever channel had the best offer of wintersport... Just watched Marit get her gold from this morning as part of the closing ceremony.

Had a minor excursion into rugby union on Friday and yesterday - Go Scotland (they beat England and how!)

[Inger62 in reply to PMRpro]

Wow- Nice!! One sometimes wonder whether anyone outside Norway cares.. Good to hear! This OG has been exceptionally good for us, new talents on their way up, and good old Marit B, but then the summer OG and such, we do very poorly... indeed. Rugby doesn’t exist up here, but I’m definately a Scotland fan! Ciongrats! Are you scottish Pro?

[PMRpro Ambassador in reply to Inger62]

I moved to Scotland at 18 to go to Uni, met my husband there (also not a Scot) but my maiden name was Murdoch - must have been a Scot somewhere in the mix and if I were to return to the UK I think it would be to Scotland. We've lived there longer than anywhere else although not in one chunk and one daughter and my brother still live there. The other daughter is in Whitby. We have friends and family in the south but it is so expensiveI doubt we could afford to buy there!

I really only like winter sports - the summer is a bit of a desert except for tennis! I like really good crosscountry but prefer biathlon. The Tour de Ski happens just down the road from where we live but I have never been! My favourite skier is Axel Lund Svindal with Kjetil Jansrud a close second - they always seem such nice guys in interviews. ALS does my favourite ever advert but I can't find it on YouTube now!!!!!

[Inger62 in reply to PMRpro]

ah, I see. I’m a Scotland fan, and Edinburgh is is my favourite city on earth. My kids are quarter Scots. We were lucky to «borrow» a flat in Edinburgh many summers. Will see more of Scotland some day! Whitby looks nice too. The names are Old Norse: Hvitby, Esk, Skarberg (Scarsborough) Jork Aislaby, Nyholm aso. But then, that was how the PMR/GCA wandered over the Northsea some 1200 yrs ago.. Norw/Danishviking invation. We could be related you know 😉 Wow, sounds like you’re in the middle of the action down there! Soon the sun is warmer and you can enjoy your cappuccino outside in the sun and snow, and watch handsome skiers sliding by ⛷😎

[PMRpro Ambassador in reply to Inger62]

The older daughter lives just the other side of the Forth from Edinburgh, an easy trip on the train. I'd love to live in Edinburgh but I suspect it is too expensive! But Fife near a train station would do fine...

[Inger62 in reply to PMRpro]

Oooh- nice! Me too! We could time-share a flat together! If not we’ll be sure to end up on a bench on top of Princes Gardens with a tasty lunch box, sanwiches to share, samosas, double lattes from M&S across the road, and street mucisians playing outside Nasj Museum next to us, and later take a stroll up the High Street! And after a few pints in an outdoor pub, we’ll stroll up to the Castle singing Sunshine On Leith together with Jane, who also loves Edinburgh me thinks 🏴󠁧󠁢󠁳󠁣󠁴󠁿🍻

[PMRpro Ambassador in reply to Inger62]

Now there's a thought!!!!

[tgca in reply to PMRpro]

My daughter went to the university and loved every minute of living in Edinburgh and I loved visiting her. As for the Olympics, my favourite were the cross boarding and skiing and cross country... kinda wish I could knock off a few years...don't we all?!

As for pred, I will have been on it for 3 years in March for GCA and am dsns-ing to 7.5.

Snow in the south here is forecast and the weather man says we are now as cold as Norway and Iceland brrrr!

[PMRpro Ambassador in reply to tgca]

Don't complain too much - it snowed in Rome today! You can image the chaos THAT caused

[tgca in reply to PMRpro]

Hang on a minute, Rome suffered snow? Just wait til our trains realise there's a flake on the line...

[PMRpro Ambassador in reply to tgca]

stol.it/Artikel/Chronik-im-...

Sorry - it's in German but pictures are multilingual!

[SheffieldJane]

And North Korea and South Korea are talking in spite or because of the idiocy of Trump a real Olympian result!

The spontaneous rendition of “ Sunshine over Leith” was tear inducing to say the least.

[PMRpro Ambassador in reply to SheffieldJane]

Having watched it in any language but English - didn't catch that!

Hmm - not sure I'm holding my breath! Though as long as they keep talking until after I've been to Seoul in July that's fine.

[Inger62 in reply to SheffieldJane]

Yess Jane-so right! North and South, one team! Now I need to check out Sunshine over Leith! , or «on» Leith You mean? Only know the Proclaimers, but was sung in relation to Korea/OG? Missed it. Guess I could check out Trump tweets, I’m certain he’ll have sth sensible to say about it 😉

[Patience47 in reply to SheffieldJane]

You really do hate my president! I don't make political comments, so why do you? I have always admired your posts and the compassion you have for others. I find your comment offense and upsetting. Can we please refrain from further political comments. ......PLEEEEEEZZZ

[GOOD_GRIEF in reply to Patience47]

Fellow Yank here.

I don't have any problem hearing the views of those in other countries. Comes with the territory of being the world's leading power. We need to listen.more. We're strong enough to withstand some criticism.

[Patience47 in reply to GOOD_GRIEF]

You say this because you dislike Trump too. I don't mind criticism but this isn't the place for it. Perhaps you should listen more.

[northwesterner in reply to Patience47]

I agree. I hear enough criticism of my president every where else. I like being able to here for medical and health experiences of others that have some of the same Dx as myself.

[GOOD_GRIEF in reply to GOOD_GRIEF]

Alwayaheadache • northwesterner

Keeping in mind that stress is not good for our condition, and keeping in mind that others are different from me, I'm going to choose not to react to a slight and wish us all all peace in our time.

Chill, folks.

[SheffieldJane in reply to Patience47]

I am sorry that I have caused you upset. Here in Britain the reporting of his harsh dialogue with Kim Jong Un feels frightening. We have traditionally looked to your president as the leader of the free world. I will refrain from mentioning him and remember that it hurts you in future.

[Patience47 in reply to SheffieldJane]

North Korea has only gotten stronger just as Germany did in WW 11. Past American presidents have done nothing to stop North Korea from increasing it's ICMB capabilities, and NK grows stronger every year. The problem isn't going away, and it would be naive to think otherwise.

That's all I have to say about it. Jane I know you mean we'll and I appreciate your post, and I thank you. I come to this forum for knowledge and hopefully friendship.

Best wishes, Edward

[SheffieldJane in reply to Patience47]

Thanks Edward. I need to be more careful in what I post sometimes. I take all your points on board. You are quite right, once we start on religion and politics the forum stops being therapeutic.

I hope you are feeling well in yourself. I am finding this disease very tedious and frustrating at the moment.

[Patience47 in reply to SheffieldJane]

Thank you Jane.

[SheffieldJane]

We live in hope!

[SheffieldJane]

The Scottish rugby supporters began to sing The Proclaimers, Sunshine ON Leith when things were going their way, according to a Tweet from James Corden with footage attached.

[PMRpro Ambassador in reply to SheffieldJane]

Oh right - didn't hear that on the Italian coverage. The commentators LOVE their rugby and were getting VERY excited and loud! I DID hear Flower of Scotland towards the end...