Cumulative dose of Prednisolone

[HamishPMR]

Are there figures available for the maximum cumulative dose of Prednisolone?

[PMRpro Ambassador]

Not quite sure what you mean - anyone who kept a spreadsheet would know accurately but since pred is sometimes used for many years, not only in PMR/GCA, there will be a widely ranging cumulative dose and anyone who has been on pred for a very long time is unlikely to ever get off it entirely.

[Megams]

~HamishPMR - please can you be more explicit in your question so I can understand better?

I have kept a daily total of my steroid intake over a period of 5+ years - what I do know is that my intake over those years has crept up slowly to double the amount I started out at originally - am I close to what you are asking?

[HamishPMR in reply to Megams]

I was talking about the total number of mgms that one had consumed. Presently I have taken 4600mg of Prednisolone since I was diagnosed with PMR. I'm sure there are figures to indicate the most that one can take before trying to find another medicine.

[Megams in reply to HamishPMR]

~Ahha - thanks Hamish - that gives me a better idea and haven't ever added my totals up but would be most interesting to say the least ~

[PMRpro Ambassador in reply to HamishPMR]

" I'm sure there are figures to indicate the most that one can take before trying to find another medicine."

I don't think it is a question of CAN take, it is how much it may be advisable to take. I've taken well over 20g - not sure exactly how much - but methotrexate was only broached about 18 months ago and it was a nightmare. Leflunomide is next - it terrifies me to be honest! I am well managed and happy on pred, too high a daily dose to be comfortable about it but I am trying again to reduce and see where I can find a balance that is acceptable.

I think you can't say a specific cumulative dose - it does to some extent depend on the dose. You could remain on 5mg for life for a variety of reasons - that's 1.8g per year, doesn't take long to get to 20g does it? And that is the sort of dose that 40% of PMR patients end up on and after 10 years it is unlikely (not impossible, unlikely) they will get off it.

practicalpainmanagement.com...

But that is what is called a physiological dose - the same as or less corticosteroid than the body requires to function day to day. So should that count to your cumulative dose?

[Odosmum in reply to PMRpro]

Don't fear leflunomide. I've been taking it for at least 15 years now and it suits me. I know some people can't tolerate the UK, digestive disturbances, so lay in supplies of imodium or your favourite stopper! Methotrexate, I struggled with - and it had no positive effect on me but leflunomide changed my life for the better - that was for inflammatory arthritis though. Good luck!

[PMRpro Ambassador in reply to Odosmum]

I have to be able to function as a sole carer - the gut effects are not an option. And it isn't so easy to get imodium and things here!!

[Odosmum in reply to PMRpro]

That's a real shame. I had to 'go' only after hot food and only once a day. It settled very quickly and only recurs occasionally. Overeating is a problem!

[PMRpro Ambassador in reply to Odosmum]

That MIGHT be acceptable ... but was it worse at first?

[Odosmum in reply to PMRpro]

Couple of times a day and no great urgency, as I recall. Settled down very quickly. One thing though, I didn't start off on a high dose to test tolerance. It was just 2 5mg pills from the start and the dose has not changed.

[HamishPMR in reply to Megams]

No I was not referring to the daily intake, I talked of the total mgs since original PMR diagnosis.

[Megams in reply to HamishPMR]

~Indeed yes - I did pick that up from your last thread.

[MrsNails]

Hamish

Is this what you’re asking about?

healthunlocked.com/pmrgcauk...

MrsN

link.springer.com/article/1...

[HamishPMR in reply to MrsNails]

Thank you Mrs Nails, that is the type of info that I was after. 6000mg tops?

[MrsNails in reply to HamishPMR]

I’ve added an extra link to my original reply

link.springer.com/article/1...

[steamloco]

sorry but my wife is still trying to find the level that suites her , cannot give you any advice