Prednisolone & Nausea

[Orangecakes]

4 days ago I reduced my prednisolone dosage from 3mg to 2.5 mg. I stayed on 3mg for 6weeks and was having a bit of nausea in the morning towards the end of the 6 weeks. Now that I have reduced to 2.5 mg I am feeling nauseous all day.

Otherwise, I am feeling okay, now and again I have minor aches and pains.

I feel achy and stiff in the morning upon waking, in fact the aches and stiffness wake me up in the morning, once I am out bed, I am okay.

I have been sipping coke a cola for the nausea; a remedy that I was given for morning sickness when I was pregnant by my obstetrician.

I am thinking the cause of my nausea is due to adrenal insufficiency? Should I be concerned?

Any ideas, advice or suggestions would be appreciated, thank you.

[DorsetLady PMRGCAuk volunteer]

Nausea certainly is a symptom of adrenal insufficiency- really the only way to nudge them into working is to bear with it. Maybe stay current dose and see if it improves. From what you say, I’m guessing you aren’t using one of the slower tapering plans that take weeks to get from higher dose to lower but just dropping straight day. That’s probably not helping - with adrenals you need tiny step, slow taper, time and patience.

You could ask for a basal cortisol test from your GP to check the state of your adrenals.

But you do also mention you have some aches/pains - that could be adrenals or slightly too low a dose of Pred for your illness.

[Orangecakes in reply to DorsetLady]

Thank you very much for your input. Good idea to ask for a basal cortisol test. I will continue with 2.5 mg, I will wait and see, it is difficult to tell if aches and pains are adrenals or too low a dosage for my illness. What a bother this PMR is, so glad to have this forum and your advice, you and all who post have assisted me with my PMR for almost 3 years now. Thank you so much. Keep smiling and laughing. xx

[Hidden in reply to DorsetLady]

Question for DorsetLady and anyone else who might know - my rheumatologist told me recently that there was no point in checking my adrenal function until I'd been off prednisone for 6 weeks. Love these comments made as if they're carved in stone somewhere . . . but is it true?

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Not sure where he gets the 6 weeks from - the normal advice is that they may not be fully functioning for anything between 6-12months after finishing Pred.

But some on here have been tested to see if they are CAPABLE of working around a Pred dose of 3mg or below.

Others may have more insight.

[PMRpro Ambassador in reply to Hidden]

Some endos will start to look at 5mg and below but that is to see if anything is happening, you won't get an "accurate" result until you are off pred though why 6 weeks escapes me.

Some people will start to get adrenal function returning sooner than others - someone still on a few mg said the other day their synacthen test was normal. Otheres will have to get lower before anything registers. But there is absolutely no reason why they can't check basal cortisol every so often from about 5mg to see if anything is stirring. Basal cortisol may be dire at 5mg with levels under 20nmol/L, anything under 100 is considered definitely adrenal insufficiency, If you then have a look now and again as the pred level goes lower, you can see if anything is happening and if it is, how much. If nothing else, is will show if you are at risk of tapering too fast.

[SnazzyD]

I agree with DL. Have you read the bit about adrenals in the “NEW FAQ’s 2022 & 2023” on the right of this page? It should explain a lot.

[Orangecakes in reply to SnazzyD]

Thank you very much for your input. I will continue with 2.5 mg, I will wait and see, it is difficult to tell if aches and pains are adrenals or too low a dosage for my illness. I will have a look at the “NEW FAQ’s 2022 & 2023”. What a bother this PMR is, so glad to have this forum and your advice, you and all who post have assisted me with my PMR for almost 3 years now. It is a comfort to know that one is not alone on this journey. Thank you so much. Keep smiling and laughing. xx

[PMRpro Ambassador]

Just to add I agree with everything DL has said.

[Orangecakes in reply to PMRpro]

Thank you so much. xx

[Kendrew]

Haha!.... and I agree too Orangecakes.

I'm currently on 3½mgs of prednisolone and been experiencing intermittent nausea at times. It's beginning to settle down now and based on what I've learnt from DL, I'm pretty sure it's adrenal related.

It happened after my taper from 4mgs down to 3½mgs too but I've been using a very slow tapering regime so nausea not as constant as yours appears to be at the moment.

Mine usually occurs when I've woken in the morning (at 65 I'm pretty sure it's not morning sickness!😂) but doesn't last too long and doesn't happen every morning. I've also experienced it in an evening but otherwise ok.

I've also experienced some aches & pains that I also feel are adrenal related and not quite the same as the ones that manifest from the PMR.

Hopefully your symptoms will settle down but if you're not already tapering using a 'slow' method, then I'd seriously urge you to consider using one of them.

Good luck.

[Orangecakes in reply to Kendrew]

Hi Kendrew, Yes, as well at my age, I know the nausea is not due to pregnancy. Not sure though if I 'd rather be pregnant or have PMR, lol.

Thanks for sharing your issues with reducing, it is a comfort to know I am not alone with these symptoms, although wish neither of us had them nor PMR.

I thought a slow taper was to decrease every 6-8 weeks if feeling okay, maybe I am missing something here?

I hope for you, that your symptoms settle down as well. All the best to you. Thank you for responding.

Orangecakes xx

[PMRpro Ambassador in reply to Orangecakes]

It is but at the really low doses the adrenals may not be able to keep up even with that, Good mantra: the lower, the slower!

[Orangecakes in reply to PMRpro]

Thanks Pro, I will adopt the mantra the lower the slower. I thought 6-8 weeks if feeling okay was the slow taper. Wondering how slow is slow?

[PMRpro Ambassador in reply to Orangecakes]

8 weeks is slow. Sometimes you just need to be even slower!

[DorsetLady PMRGCAuk volunteer in reply to Orangecakes]

Ahh….but do you mean staying at each dose for 6-8 weeks following an “overnight’ reduction or taking 6-8 weeks getting from one dose to next…

.. the second option is the better way for adrenals….

see tapering plans in FAQs - healthunlocked.com/pmrgcauk...

[Orangecakes in reply to DorsetLady]

I mean staying on each dosage for 6-8 weeks then drop by .5mg (always if feeling okay), staying on that dosage 6-8 weeks before reducing again by .5mg.

I will have a look at the tapering plans tomorrow, time to avoid any more screen time before bed.

Thank you for your continued help, I may have more questions tomorrow regarding tapering.

Also wondering how to discern age related aches and pains from PMR as I taper.

What a mine field this all is. Anyway, will get there in the end, mustn't lose faith, keeping positive.

[Kendrew in reply to Orangecakes]

You will get there eventually.... we've all had things to learn along the way.... some things we've researched ourselves, some things are passed on to us from others and some things evolve through personal experience, trial & error.

Definitely look at the slow tapering plans DL has sent you the link for.

A slow taper means staying on a particular dose for approximately 6 to 8wks till stable on it, and then taking anything between 3 to 5wks minimum to gradually introduce the new dose on some days but interspersed with days on the old dose....building it up gradually till you're taking that new dose every day. The tapering regimes will make it clear when you look at them.

I can usually tell if I've dropped the pred dose too low because PMR symptoms take a few weeks to manifest as the inflammation gradually builds up again.

Aches & pains caused by withdrawal from the previous pred dose usually emerge within a few days and then diminish again within one to two weeks.

It can be quite confusing but you will get to a point where you're better able to understand your body and what it's telling you. In the meantime....always lots of help and support here.

[Orangecakes in reply to Kendrew]

Morning Kendrew, Thanks again for your support and advice, I will see if I can figure out the slow taper of gradually introducing a new dosage, right now seems complicated but need to investigate it more. What a blessing this forum is and has been. Take care and have a lovely day and weekend.

[DorsetLady PMRGCAuk volunteer in reply to Orangecakes]

Mine isn't complicated - that's why it's call DL Simple Taper-😊 if you look at the 7 week one it much same timeframe as you're on- just stay on final week one more.

healthunlocked.com/pmrgcauk...

[Kendrew in reply to Orangecakes]

DorsetLadys and PMRPro's slow tapering regimes both very easy to follow. I printed off the regime I opted for and now write on my calendar what dose I need for each day when I'm tapering. Really simple.

[DorsetLady PMRGCAuk volunteer in reply to Orangecakes]

Tapering - a slower plan may help a little more with nudging the adrenals - I don’t know…. But it’s always worth a try.

As for discerning normal aches/pains from PMR- agree that is difficult- but would say nausea doesn’t fall into that category…. and that is what seems to be your main issue.

[Orangecakes in reply to DorsetLady]

Good morning DorsetLady, I can understand that a slower tapering plan would be best for nudging adrenals. I will look at the tapering plan in the link you sent and Kendrew has mentioned of alternating current dosage then new dosage, a bit confusing at the moment. Thanks again for your valued advise and help.

[PMRpro Ambassador in reply to Orangecakes]

What Kendrew mentioned is just an outline of what the slowed tapers do - it will be clear from the posts recommended by DL

[Orangecakes in reply to PMRpro]

Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Orangecakes]

Just replied above - will PM you on subject

[Orangecakes in reply to DorsetLady]

I just had a look at DL slow taper, yes please, I would like like a copy of you spreadsheet. Not sure how I PM you to send you my email?

[DorsetLady PMRGCAuk volunteer in reply to Orangecakes]

I have just contacted you..so look at the Chat function - icon looks like paper arrow - top banner -[you may get notification email] - accept then reply

[Pegasu]

I wondered why I was feeling nauseous, I'm also experiencing upset tummies a bit. I'm down to 3mg now, tapering one mg per month on the advice of my GP. My aches and pains are coming back but nowhere near as severe as they were a year ago. I have stopped the amitriptyline just to see if I can manage without pain killers. I have also found that the aches and pains start directly after reducing the pred and then easing off for the rest of the month as Kendrew has described. Interesting!

[agingfeminist in reply to Pegasu]

A drop of 1 mg overnight is a tremendous challenge when you are on a low dose. Better to use the month to make the transition. Just introduce a lower dose one day and week, and then two separated days in a week etc. It takes 7 weeks to make the transition. There are times when even this doesn't work. The disease isn't forced into remission...in fact I wonder why it ever goes into remission (inverse of why did it ever start? ). We are just following the path this disease decides to amble along. Hope yours is a short straight path , with no twists or turns.

[PMRpro Ambassador in reply to Pegasu]

Below 5mg you are courting trouble if you continue at 1mg per month. Not more than 10% of the dose is the rule for the step - not ours, top experts in adrenal insufficiency said it - and at 5mg that is 1/2mg, even less as you go lower. Less than 1/2mg is tricky - which is where our slowed tapers come in. The adrenal glands can't just turn up the heat in response to a 20+% change in oral pred dose, they have to get used to it gradually.

If what you have really is PMR then the chances of ANY painkillers, including amitriptyline, helping is small. It isn't nerve pain, it is inflammation, And the right dose of pred is the most effective painkiller for PMR and GCA.

[Karendeena]

I had nausea, low appetite, weight loss, diarrhea and everything in-between when my doctor decided it was a good idea to taper 1 mg every 2 - 3 weeks. Moving forward I was so poorly I paid to see a rheumatologist and he immediately put me back to 5mg tapering 1mg every 3 months. I listen to experience on here and take it down on an even slower taper by half mg. I am down to 2mg but don't want to waken the beast again so being very careful this time. Repeated flares make it more difficult and I have been there twice

[Gossiplady]

hi orange cakes! I too suddenly developed nausea when I reached 3mgs. Awful! Purchased from A of course, online, Queasy Drops , 21 in a packet to suck. I gather they are used by patients on chemo.Worked really well. Stopped as the mgs tapered but kept in the kitchen just in case. Keep smiling.

[Orangecakes in reply to Gossiplady]

Hi Gossiplady, thanks for your empathy and suggestion of Queasy Drops. Yes, certainly keep smiling and laughing. Take care. All the best.