Tapering………

[Bayleaf1]

I’ve had problems tapering and now seem to be stuck at 7mg. I did try to drop to 6mg and that was a no go area. For the past 4wks I have been tapering using the “dead slow nearly stop” system to try to get to 6.5mg but have now started to get pains in my knees again. Looking for advice please. I don’t really want to lose the progress, however small, that I have made over the last four weeks.

[SheffieldJane]

7 mgs is such a tricky stage with the Adrenals chipping in. Have you tried a tablet cutter? Maybe drops of half a mg or even a quarter would work - maybe extending the 4 weeks between drops. It is very good for Adrenal recovery to go slowly as you may already know. Maybe 7 mgs is your optimum dose and you should rest there for a while. When my diagnosis was PMR only, I got stuck there for a year, then something shifted and I got down to 6.5mgs, then eventually to 3 mgs only to be diagnosed with GCA ( non cranial ) so something else was brewing. Always a possibility unfortunately.

[Bayleaf1 in reply to SheffieldJane]

That must have been awful to come all that way down to 3mgs and then have to go right up higher than you originally started at. I shall probably end up sticking at 7mg for a while now.

[DorsetLady PMRGCAuk volunteer]

The problem is if your PMR needs 7mg at this moment in time, it needs 7mg -no matter if you use an overnight drop or a slower taper if you go below YOUR required dose you will flare.

A slower tapering is not a magic bullet -it’s just an easier way to get from a. to b.

You have a couple of options -

go back to beginning and restart taper again,

go back a couple of weeks, and repeat the last couple of stages, hoping that will be enough.

But as your previous post and this one seems to confirm - 7mg is your lowest achievable dose for time being -won’t always be -but is for now.

No point trying to force yourself to a lower dose -you’ll just keep ending up in same situation…. give yourself a bit of leeway for a couple of months -and then try again.

[Bayleaf1 in reply to DorsetLady]

Thank you for that advice. I don’t really know why but I feel as if I’m failing but I know I’m not it’s just the GPS and rheumatologists who expect everyone to reduce to zero in a year that make me feel that way. All my rheumatologist said was that I wouldn’t see him again unless I had repeated trouble reducing the dose and then they would consider giving me another drug in addition to the steroid to enable a reduction. I didn’t like the sound of that either. I think I will go back and repeat the last two weeks and then if not possible to continue will stay at 7mg for a couple of months and take it from there.

[DorsetLady PMRGCAuk volunteer in reply to Bayleaf1]

Lots of people feel pressured by their doctors -and it’s so unfair that patients are made to think they are failures.

There’s enough issues with PMR without that and it’s not as if anyone wants to be on steroids longer than is necessary .,.,

So much for the caring profession 😳

..and agree on adding in another drug why don’t they let the best one (Pred) do it’s job properly in the first place.

Sorry, rant over.,. my GP was brilliant with my GCA taper -snd I do get cross when I see what other do through.

Best of luck…

[PMRpro Ambassador]

You aren't heading relentlessly to zero come what may. You start at a dose higher than it is hoped you will need, clear out accumulated inflammation and then start tapering the dose in a process called titration to find the lowest effective dose, the lowest dose that gives the same relief as the starting dose did. To do that you reduce to a dose where the symptoms start to return and go back to the last good dose - that's why it is best to proceed in small steps. When you find the symptoms return at the same dose a couple of times, however you reduce, you have arrived, For now - it doesn't mean you won't get lower, just not yet.

It is silly to add another drug that isn't guaranteed to make a difference and has its own unpleasant side effects at this stage - if it were 12 you were stuck indefinitely that would be another thing,

You aren't failing - they are failing you ...

[Bayleaf1 in reply to PMRpro]

Thank you that makes me feel better. I will try not to worry about it and carry on with 7mg for now and tell myself I’ve done well to get this far.

[PMRpro Ambassador in reply to Bayleaf1]

You have. A good doctor won't get too upset now you are below 8mg.

[Temoral in reply to PMRpro]

So many posts are concerning the pressure we feel when being 'encouraged' to taper quickly, when we cannot maintain a quality of life. So, we are trying to manage the medical opinion as well as the condition. It would be a good learning experience for some health professionals to read this forum and observe what the journey entails......just a wish....😉

[PMRpro Ambassador in reply to Temoral]

Even better if they "caught" PMR!

[darkred in reply to PMRpro]

Yes, that might result in some empathy!

[Mayadill]

My position, I have realized reading this forum, is in comparison to others I don't really care. If it ain't broke, don't fix it. Sure I'd care fast enough if my bloods went wonky, but they don't, sure try reducing periodically, but if it doesn't work, what's the worry. The PMR will diminish eventually and it'll work and by this non-method I happily got down to 4 before the vaccine got in the way. All the pill-cutting and the 0.25 mg just isn't how my mind works. To me any kind of pressure to reduce ahead of the curve whether from a doctor, or self-generated is unnecessary stress. .