Tapering the dosage down

[golfnutter]

So here we go again !

I’ve been sitting very comfortably on 8mgs for eight weeks reasons being ,busy days that can’t be avoided and not wanting to subject my body to unnecessary stress.

Spoken to my rheumatology nurse who advises reducing to 7.5mgs alternative days for the next two weeks. I’m quite nervous about doing it this way as I’ve already been down this road before with unwelcoming effects.(7mgs )

If I’m lucky enough that things go well over the next fortnight can anybody here advise the next step please from the alternate day doses.

I’ve checked out several slow tapering plans and suggested to the rheumatology nurse the one that took 7 weeks to reduce a mg. She said that was too slow!!!

What do you guys 🤔

[PMRpro Ambassador]

Tell her it is YOUR body and you are now at a dose where you need to go slower, not faster. For two reasons: you are entering the realms of the need for normal adrenal function to return and going slow encourages that and the lower you get on dose, the closer you are to the dose you are looking for, the lowest effective dose. You are NOT tapering relentlessly to zero, you are looking for the lowest dose that works as well as the starting dose did. The fact it went pear-shaped at 7mg last time is a warning to be extra-careful this time. You are already at what is called a physiological dose, similar to the amount of corticosteroid the body produces naturally in the form of cortisol and where adverse effects are less likely.

This isn't a race - except the sort the tortoise won and not the hare.

[golfnutter in reply to PMRpro]

Totally agree. I get it ! and she doesn’t.

I was on the Lethfludimide and pulled myself off it due to unwanted side effects ( gastric upsets, nausea etc etc

. I really appreciated your informative advice and I will do things my way.

[DorsetLady PMRGCAuk volunteer]

It’s not too slow if it works...and doing it too quickly will inevitably lead to a flare, so you end up taking more Pred and taking longer.

[Bcol]

Good morning. I think PMRPro and DL have said it all. I am on a similar path and also kept myself on 8mg for an extra two weeks to make sure I was fully comfortable. I don't use the alternate day approach and I have just started my next slightly modified DL taper to 7mg and, if all goes well, will get there in the next 7-8 weeks. If not then it will take longer. There doesn't seem any point to you having to rush a reduction particularly as it caused problems last time which will/did lead to you taking even more Pred than a slower approach.

[Marijo1951]

I've now reached 5.5 mg pred per day and it seems to be working. Until now I've always had trouble getting below 7 mg without a flare. Fortunately I have a rheumatologist who is happy for me to take it at the pace that suits me best. The only way I don't follow her advice is that I don't alternate 5 and 6 mg, but use a pill cutter on the 1 mg tablet so I can get as close to 5.5 mg per day as possible. I think my body copes better this way, and I'm certainly becoming more skilful at cutting the tablets evenly.

[123mossie]

I’m now at 4mgm after a 6week taper from 5. I added another week or so to the review date, I don’t think the gp notices & it gives me time to know I’m ok on the new dose.

[MamaBeagle]

That's what I did....added a day at the new dose each week and then stayed at the new dose for at least a month and sometimes longer. I've had a comparatively easy ride so far. I'm just reducing from Img very very very slowly at the moment😏