New tapering

[Sueloobyloo]

Hi all, I was wondering if you could help me and advise me, when tapering off steroids, how long in between your first cut down dose to the next one do I have to wait? Kind regards guys 😊

[DorsetLady PMRGCAuk volunteer]

hi,

See you been on steroids since July last year…what dose are you on now, and how have you tapered to date?

Most people find best option is to do it on a monthly basis initially , but that depends on a few things -

What your doctor advised,

How your PMR is behaving,

Most importantly,,how you feel in yourself.

Bit more info about your situation might help us to give a better answer..

[Sueloobyloo in reply to DorsetLady]

I still have pain in my hips, plus I sometimes feel like a punch in the ribs and as if I’ve had a needle stuck in me, or a bite feeling if you like in random parts of my body. The only thing is, I have other issues like spinal stenosis, lymphoedema, diverticulosis disease and the list goes on, so I get confused to the point where I don’t know what’s what 😫 so I’m what you’re called, a complicated case lol, but any advice will always be appreciated 😊

[DorsetLady PMRGCAuk volunteer in reply to Sueloobyloo]

Hips sound PMR ish -but not sure about rest -so maybe stick at 12.5mg for a bit longer and see how hips do….

[piglette]

I personally think as a rule of thumb to reduce at a minimum monthly. For some unknown reason some doctors give us steroids and then want us to reduce hell for leather which often just causes people pain and misery. Go slowly but surely.

[Sueloobyloo in reply to piglette]

You’re right there, it is a big jump dropping from 15mg to 10mg plus I had to up my dosage to 12.5mg so this time I am taking it really slowly, thank you for the advice 😊

[piglette in reply to Sueloobyloo]

It is usually suggested you should not drop more than 10% at a time.

[HeronNS]

It depends very much on your individual situation. The main things to remember, at least I think so, are not to reduce too quickly and not to reduce in big steps. I note your first, unsuccessful, taper some time ago was to go to 10 from 15 all in one go. This is 1/3 of the dose, when it is recommended never to taper by more than 10%. I was lucky in that my doctor told me to taper by 1 mg at a time, and I was able to do this weekly until I got to 10, maybe most people couldn't do it that fast. But at 10, as PMR symptoms had started to re-emerge, I started using one of the slow taper methods which do allow a monthly reduction, but over four weeks, not overnight in one go. Have used this method ever since. Given your past experience I would think a 1 mg taper would be wise, and not too fast, don't try that 1 mg a week which I now know I was very lucky worked for me when I was at higher doses. (I did know enough to stop tapering when symptoms reappeared and forum advice got me back to 10 from 9 for a couple of weeks before I started the slow taper.)

Slow and steady wins the race.

And the lower your dose, the slower you need to go.

Good luck! 🍀

[Sueloobyloo in reply to HeronNS]

I will try that and thank you 😊