Increasing pred dose- how long do you allow for it to have the desired affect?

Hi Eileen - I have only just increased today so I have not seen any benefit yet.

I know about the system of going up to a higher dose briefly and then coming down to a bit above the flare. However I have had to do this 3 or 4 times since the early spring -- one of them quite recently.

I  just wonder if it is not doing me any good and maybe  should try a smaller increase and give it more time to take effect - I sometimes think I am too impatient.

But I don't know what is a reasonable time to settle.

If this is happening repeatedly - then you are trying to reduce too far in the first place. Once you have things under control, slow down your reduction, especially just above the doses where you have flared. That is the sign you have found the dose you are looking for - that manages the inflammation as well as the starting dose did. It may not seem very low - it doesn't mean you won't get lower, just not yet. And it will be perhaps 1mg above where you notice niggles of returning PMR symptoms - but heading for that you must reduce 1/2mg at a time and remain at the ney dose for at least 3 or 4 weeks to be sure it is still enough. Go in too big steps or drop too often and you will overshoot the dose you want and have no idea where to stop.

Thanks for your advice.

Having been on pred since the beginning of last year the lowest I have ever been is 9 and some of my flares have happened at 10 - niggles even at 11. 

I am okay about this but it seems an awful long time and I worry not so much about taking the pred but a GP pressuring me to do so and maybe cutting the prescription.

So far I have had a lovely GP who lets me manage my own dose but this may not always be the case

It took me 4 years to get reliably below 10mg. Some people only absorb 50% of the dose they take - while others absorb as much as 90%. Obviously that makes a big difference. 

Eileen that is very interesting.

I don't suppose there is any test which determines how well you absorb it?

 

Obviously I can't know how well I do or don't absorb pred.

However I do know that I don't absorb vitamin d very well-  wonder if there is any connection.

Well presumably there is or they wouldn't have been able to work out the bioavailability! I imagine it is a case of getting serial readings of blood level after taking a standard dose, drawing a graph - and fancy maths to work out how much was absorbed. 

I don't know if poor absorbtion applies across the board?

Drugs given by i.v. infusion have a bioavailability of 100% - and I'd think so do i.m. shots. Google bioavailability and look at the Wiki link - explains it better than I could! All sorts of things affect it.

 

EileenH, just trying to understand. Some people people only absorb 50% of the dose they take - while others absorb as much as 90%. What effect do you think that has in getting to zero, if any. Hope all is going well, with your husband's recovery. Think positive and smiling. 🙂

None at all - except the person who absorbs 50% will apparently run the entire journey at a higher oral dose but that may also be the case because their disease activity is higher. At any time you are taking the dose that manages the symptoms for YOU - and that is why you titrate the dose the way we do. Everyone needs a slightly different dose and time. You will take the pred as long as the disease is active - the pred won't change that, it doesn't act on the disease process itself.

And you basically excrete the Pred the is not use by the body. I read articles online trying to understand. The article on Bioavailability, from Wikipedia, got me going down this path. Never thought about the different levels of absorption and ramifications. I wonder if that may have any bearing on a person ability to get off Pred.

You excrete all the pred really - after it has done its job. But no, the different rates of absorption etc aren't particularly significant - you will need pred as long as the underlying cause of the PMR is active. Once it has burned out and gone into remission there will be no inflammation and you won't need any pred to wipe it up. So you will be able to reduce the dose to zero and stop without having symptoms.

Thanks EileenH, for once again supplying a great explanation. So the Pred I took in the spring and summer, has done it job and damage. Therefore accumulative damage has been done, get to the lower dosage. Just do not flare again go nice and easy. Thanks again, I am thinking positive and smiling. 🙂

Thanks for sharing - how long did it take you to get off completely?

Hi greentea 26

It took me best part of a year...i had withdrawals and bone pain when i came off them..but i rode it out...i feel more in control now 10 months on..even though i do get some pain i use NSAIDS, painkillers and rub in oitment which i cant name on here...but my mental state is great now..preds made me depressed and highly emotional...i am back to normal now my adrenals and cortisol are not suppressed by the preds anymore and are starting to function normally although it can take up to two years for adrenals and cortisol to come back 100%...