Tapering problem

[Clucket]

I am trying to decrease from 9 to 8.5 mg of pred on a long tapering reduction since the eginning of January. I have now got to 3 days old dose 1 day new , decreasing next to 2 days old dose , 1 day new, but on the last decrease day I could feel all the symptoms reappearing, just like before. They gradually lessened with the higher dose over the next 3 days. How do I reduce further without feeling all the symptoms of steroid reduction. Do I keep at 3 days old dose one day new till I don't get the withdrawL symptoms? How long should I then expect that to take? Or is there another way ? Many thanks . Carol

[DorsetLady PMRGCAuk volunteer]

I would stick to the 3 day/1day for a while longer, until you are sure you feel happy with it…then try the 2day/1day again.

Difficult to be specific, it’s your body, so you must listen to that ….but did you do anything different on the days previous to cause a blip?

Obviously if it happens again, you may need to go back up to previous step.

Sometimes it’s just not the right time, so don’t get in a stew about it….

[PMRpro Ambassador]

You are never tapering relentlessly to zero come what may: you are seeking the lowest effective dose for the moment. That means the lowest dose that is enough to manage the inflammation that is being created every morning by the underlying autoimmune disorder. The pred has cured nothing - it is a management strategy to allow you a better quality of life until the a/i disorder burns out and goes into remission and then you will be able to reduce the dose of pred to zero and get off it without symptoms returning.

I would say you have arrived there. For now at least, you will get lower, just not yet.

However slowly you reduce you won't get lower than that dose - that is what you need to stop the drip feed of inflammation. If you take less, the dripping tap will eventually fill the bucket and it will overflow - you will have symptoms.

[Thelmarina in reply to PMRpro]

So clear Eileen. I suspect the clarity is due to repetition - for which we are eternally grateful. But huge congrats on your patience (and Angela of course!) 🏆

[PMRpro Ambassador in reply to Thelmarina]

Not just - the first explanation was almost identical! The speed of typing it is due to repetition But if something isn't broken - why replace it?

[Thelmarina in reply to PMRpro]

😅👍

[PMRCanada]

I triednunsuccessfully four times, to taper from 9mg down to 8.5mg. These attempts were over 2 years (about 6 months apart). No matter how slow the taper, around the mid-taper mark or later, symptoms would emerge and get worse over time. So I strongly suspected I was flaring each time, and symptoms were not due to pred withdrawal which I’ve experienced before when I would’ve first lower my dose. Each time I ended back up to 9mg.

That may just be where you are in your disease activity, and 9mg is what you need. How long have you experienced the return of symptoms when you get to 2 day/1 day? Listening to your body is key. If you think it’s pred withdrawal, and not a flare, you could stick with 2day/1 day and see if they resolve. If the symptoms worsen it may just mean that 9mg is your “sweet spot” for now (the lowest dose where you can comfortably function). Doesn’t mean you will stay here forever. You can always try to continue wit a taper in a few months again.

It is hard not to get up in the numbers game. We are encouraged to constantly lower our pred dose, but how that journey unfolds is different for each person. If your symptoms emerge later in your taper and don’t resolve, in fact get worse, I would not try lowering further. If it’s a flare you’re experiencing, no sense in making it worse by forcing a lower dose. All the best moving forward.

[Clucket in reply to PMRCanada]

I never got down to 2 day/ 1 day. I only reached 4/ 1day, but realize now the prev decrease made me feel not right in niggle ways but then the one onto 4/ 1 day was a really strong change which has still not got back to normal. Things that have felt OK for almost a year have started up again, so I feel that like you for now 9 is probably it, which my rheumy will certainly not be happy with , but we will cross that bridge when we come to it.