Feeling unwell after reducing Prednisolone from 10 to 9mg

I was diagnosed with PMR in May and commenced 10mg Predisolone. After 6 days I felt amazing. I reduced this to 9 mg after 4 weeks as instructed but after 3days the pain was so intense I couldn’t cope. My rheumatologist advised going back to 10mg which I have done. After 3 days the pain is now controlled but I feel really tired and nauseated. Will this go and will that initial feeling of wellbeing return?

[SnazzyD]

0.5mg drops under 10mg tend to be kinder on the body, especially when you get under 8mg when the adrenal glands need to start working to make up the short fall. Do read the adrenal section in the FAQ’s to be fore armed. Did you by any chance do anything physically extra when you felt great, shortly before your pains hit?

[Hidden in reply to SnazzyD]

Hi SnazzyD. I have just read the adrenal section and it makes a lot of sense. Thank you. I also didn’t realise that you can get 2.5mg tablets which would really help to reduce more slowly. Thinking back I did do a 3k walk 2days before the pain hit. I wish I had joined this forum sooner as the tips here are invaluable. I have a lot to learn about managing this condition.

[PMRpro Ambassador]

You mean you were STARTED on 10mg? It is all very well using such a low dose in the belief it will result in less pred but it fails to clear out the accumulated inflammation throughout the body. This means that there may be no need to taper to titrate the dose to find the lowest effective dose and that it may take some time to be clear enough of inflammation to be able to get lower. Almost no-one would manage to taper from 15 to 10mg within 4 weeks which is what happened to you. You have to springclean before you can sit back and just do light dusting.

[Hidden in reply to PMRpro]

yes I was started on 10mg as I have had a gastric ulcer. It worked fine but took a bit longer to kick in. I am back on 10mg for a week then alternating 9and10mg. I am scared that this will happen again.

[PMRpro Ambassador in reply to Hidden]

If it were me, I would want to stay at 10mg for longer.

Think of it as a tap dripping into a bucket, eventually it will overflow and cause a puddle of symptoms. What you are looking for is an amount of pred that is equal to or marginally more than the rate of drip so that the level in the bucket remains steady. If the level of the inflammation is only just below the rim you have no leeway and even a tiny bit too low a dose is enough to have a bit of leftover inflammation and you feel it. When you have been on a higher dose of pred - even for only a short time - the level in the bucket is lower and is less likely to slop over the edge. Most people who flare because of overshooting the dose need a few days on a dose about 5mg higher than where the flare occurred before returning to the dose above it.

I appreciate the worry about the gastric ulcer but all that happens when you try to force a reduction when you have so little leeway is you flare again - and the more you do that, the harder it becomes to reduce the dose. The pred cured nothing - it doesn't switch off the tap, it just scooped out some of the water. You'll get a margin of safety sooner using a beer mug to scoop than if you use an espresso cup.

And cutting a plain 5mg tablet to get 2,5mg and then making up the dose with a 5 and 2 ones will be easier for your body to cope with than alternating the dose. And with a gastric ulcer, since you say prednisolone I assume you are in the UK, why hasn't the rheumy put you on enteric coated pred which does make a big difference for delicate stomachs?

[Hidden in reply to PMRpro]

I am on enteric coated tablets with stomach protection too. Your analogy makes sense and I understand a little more now. Thank you. I will go back to my rheumatologist to discuss this with her as I do not want to feel like this for the next 2-3 years.

[PMRpro Ambassador in reply to Hidden]

That's great then - you have 1mg e/c? Get the 2.5mg ones and it make 0.5mg steps easy down to 2mg.

And you could also try using one of the slowed tapers to ease the change in dose - that also helps. All to be found in the FAQs - link in the box just below the post at the top of every thread.

Please could you tell your story and indicate a bit about yourself, especially country, in you profile bio. It saves us waiting for replies to our questions to adjust when we tell you. This is an international forum and different things apply to different countries.

[Hidden in reply to PMRpro]

I have 1mg but will ask my Gp for the 2.5s as you suggest. Than you.

[PMRpro Ambassador in reply to Hidden]

Make sure it specifies 2,5 enteric coated ...

[DorsetLady PMRGCAuk volunteer]

Hi

Agree with others, and would be inclined to try a slower tapering plan -see attached for examples - personally think it’s easier than the alternate days regime some Rheumy’s send to think,

But stay at 10mg for 2-3 weeks before you try tapering.

healthunlocked.com/pmrgcauk...

[Hidden in reply to DorsetLady]

Thank you DorsetLady.

[PMRnewbie2017]

I remember at the very start before diagnosis and starting on Pred I felt dreadful - not just from the muscle pain and stiffness but also nausea, no appetite and very tired. I think that's all part of the inflammatory process so if as others have suggested you were under-dosed from the beginning, your tiredness and nausea may be due to the effects of uncontrolled inflammation rather than Pred. I appreciate that your gastric issues can also cause nausea too but until you get your PMR stabilised it's hard to tell. You can take Gaviscon as well as a PPI (Omeprazole etc) to give you extra relief if you need it.