Down to 1mg

[MarsiJay]

At last, I feel I am nearly there. Am seeing the GP next week. What is encouraging this time is that the PMR has been quiet. OA still bothersome but hey I can;t grumble.

[Hidden]

Yippee!!!!! Good on you!!!! Fingers crossed for an onward downward trend!!!!

[Hidden]

Fingers and toes crossed!👏

[MarsiJay in reply to Hidden]

Thank you - I keep pinching myself because it's a long time since I fely like this arthritis notwithstanding. Good luck to you too

[DorsetLady PMRGCAuk volunteer]

Good, so pleased for you.

When I got that low, and even though I was ‘sure” my GCA had gone I still reduced to 0.5mg first and then down to zero.

As others have said - fingers crossed.

[MarsiJay in reply to DorsetLady]

Thank you - you have always been a voice of comfort and direction to me. I shall certainly take it slowly from hereon.

[Footfairy-1 in reply to DorsetLady]

I'm on coatedPred and know these can't be cut. So how can I reduce by .5mg, when I eventually get there?

[DorsetLady PMRGCAuk volunteer in reply to Footfairy-1]

Hi,

The only way (unless you swop to uncoated and I guess you don’t want to) is to take your tablet on alternate days. But I’m not sure how much the nobody will like that even at such a low dose. The only way is to try I guess.

If that works okay, I would then try one tablet every 3rd day, increasing the days without any medication until you get to zero. That way you would be in control of how quickly or slowly you go. At this level the Pred is having no side effects, but it’s still protecting against the inflammation reoccurring. And despite what some doctors think 0.5mg can and does make a difference for some people.

Good luck when you come down that far.

[Footfairy-1 in reply to DorsetLady]

Thank you DorsetLady.

I don't really want to change as uncoated upsets my stomach and even the medication to stop that upsets my stomach ahhh. Also I understand that coated tablets take longer than uncoated to digest so this my make a difference.

Don't want to upset the applecart!

I've got quite a way to go yet but I'm armed with this information now and will give it a try.

[DorsetLady PMRGCAuk volunteer in reply to Footfairy-1]

No you don’t want to change anything if it’s working!

I always remember living next door to a mechanic when hubby was in army and OH said to him one day, I’ve never seen you messing about with your car, most other mechanics are always doing something.

Reply was ‘my motto is, if something’s running smoothly leave it alone, if you start tinkering with it, you b****r it up!”

Wish doctors would think that way sometimes!

[PMRpro Ambassador]

I do hope so - but my misery voice of reason forces me to say: you wouldn't be the first to find 1mg was enough, zero wasn't. Don't speed up on the home straight - it's a tiny dose, nothing to ever worry about.

[MarsiJay in reply to PMRpro]

Thanks. I shall follow the advice I have garnered re' the last stage and don't want to mess up so slowly does it. How valuable it is to read the experiences of others on the stages of the disease I had never heard of until I was diagnosed in 2015. Every good luck to you too.

[TooSore]

You must be ready to dance a Jig! It feels good doesn't it? I am right with you at 1 mg. I just saw the rheumatologist and am to hold for three months. Since he thinks an overnight drop is ok, the extra time works in my favor. I will start ahead of my appointment and start the taper slowly. I have been solidly at 1 for a month and was hoping to only hold for two more months and said as much. He replied to remember the tortoise and hare- slow and steady wins the race. My concern is that if he has me at .5 for June-August, then it's 0 in September when I start school again, always a crazy and busy time.

Good luck with the appointment. Just remember that although the end is in sight, go slowly. Happy Days

[PMRpro Ambassador in reply to TooSore]

It doesn't matter what sort of drop your rheumy thinks is OK - it isn't his PMR or his body!

[Irldino]

I am at 1mg too and taking it very slowly. Going down in 1/4 mg descent on slow taper. It will take the time it takes

[MarsiJay in reply to Irldino]

Do you cut the tablets into quarters? I have bought 2 pill cutters - one better than the other but neither very precise. I suppose you could just cut and take the one pill over 4 days even if it isn't an exact division. Anyway - thanks and very good luck

[Irldino in reply to Irldino]

Am tapering to 3/4 from 1. At moment am cutting an approximate 3/4 from 1mg tab and saving the remaining quarter for when I get to that stage in taper.

[MarsiJay in reply to Irldino]

Excellent - saves waste too.

[SheffieldJane]

We are all rooting for you. 👏

[MarsiJay in reply to SheffieldJane]

Thank you so much. If I've learned anything, it's that however bad you feel at times in the course of this pesky disease, things can and do get better. My very best to you all - especially those who are still in the doldrums.

[bunnymom in reply to MarsiJay]

Thank you for that. I have had a bad week but feel better today. It is a long haul isn't it?

[Jackoh]

All the very best- thanks for your encouragement!!

[GOOD_GRIEF]

At this point it might be worth it to try uncoated for a few days and see how you react. I would think that at this dose, stomach discomfort would be minimal if not entirely absent. Then you can split the pills without worries.

[powerwalk]

Very best of luck! Hope it goes well.