Easy Drop

[diana1998]

Last August I had dropped easily from 2mg to 1.5mg over a few weeks but increased to 2mg as a safety precaution when I badly broke my humerus. I stayed there till 1st January while healing but I've now managed the drop back down to 1.5 over a 2 week period really easily and no side effects at all. Does this mean the PMR has maybe gone?? And how long should I stay on 1.5mg before trying to drop to 1mg? I don't want to rock the boat at this stage...I was thinking maybe Easter? This journey has taken 9 years and I've only had one flare at the beginning. (I was on 2mg for 18 months as very cautious).

[Bedwell]

goodness! Well done. I’m hovering about the same dosage as you. And near your age.. older!!! 86 … Thought I’d try 3/4 from next week for a couple of weeks. Been on 1 for weeks! But hasn’t been easy reducing! Tried twice a week half but not great!! So going to try3/4 every day and see!!!! See what the experts say! For you…. 😘

[diana1998 in reply to Bedwell]

Thank you, that's really interesting. And well done! So near yet so far...Good Luck with 3/4. 🤞🤞🤞

[Bedwell in reply to diana1998]

Thanks. I don’t have flares at all.. when I reduce. Just feel weak and wobbly and can’t function. However will see what 3/4 does. So difficult to cut to 3/4 with these tiny tablets but got a new cutter.. bit better.

[SnazzyD in reply to Bedwell]

That’s probably your adrenal glands not quite ready and struggling to make up the shortfall with their own cortisol. It can make one feel like this and gentle. reducing is the only way. Annoying but normal for many.

[diana1998 in reply to Bedwell]

At this low dose I have no side effects at all luckily. I haven't found the pill cutters that reliable. I sometimes cut them with a really sharp knife on a board. Have to get one's eye in!

[SnazzyD]

There’s no rules so don’t rock the boat, go by how you feel. I found at these levels a particular reduction was really easy after a previous one was hard or vice versa. It was unpredictable.

[diana1998 in reply to SnazzyD]

Strangely enough I've found the drops below 5mg have been the easiest. Before, I used to feel very bad tempered and edgy for exactly 5 days. Must have been the adrenals playing up. Now my OH suffers no more haha 😂

[DorsetLady PMRGCAuk volunteer]

I’d say whatever you feel happiest with. 😊

[PMRpro Ambassador]

Maybe. Maybe not!!! 2mg can be loads to manage PMR at a very low level of activity nad cover all your adrenal-related needs so you need to keep going slowly as you have been. Though 18 months at a dose is maybe a bit over-cautious!!! But it worked - and that is what matters.

[diana1998 in reply to PMRpro]

Thank you. There always never seemed the right moment to attempt a drop. I then read (think maybe you posted it?) about the rheumie who keeps patients on 2 to 3mg for up to 2 years to avoid a relapse. My neighbour had PMR twice but she's fine now. Think I'll attempt a drop to 1mg at Easter if ok. 🤞

[PMRpro Ambassador in reply to diana1998]

Prof Dasgupta, President of the charity, told us in a seminar during Covid that he often left patients there long term, don't think he gave a duration.

[diana1998 in reply to PMRpro]

Thanks. Interesting.