Time of Reducing

[Robinsnest72]

I have two issues. I read how many individuals have been diagnosed after me and seem to have come down to a lower dose of pred quickly. My rhemy has told me it is a slow process. I was diagnosed last August and have just come from 15mg down to 11mg. I just reduced from 12 down to 11. This is day three and I do not feel to bad. He reduces 1 mg monthly.The last time I reduced I did it on the evening dose and was in great pain next morning. This time I did it on morning dose and did not feel any different. Would that be why?

[DorsetLady PMRGCAuk volunteer]

Hi,

Could be, but maybe a month further in, your PMR is less active. One never knows sometimes.

Listen to your Rheumy, he sounds one of the sensible ones!

Just be aware that some people find it a bit more difficult to reduce once they get into single figures. So you may have to speak to Rheumy, just see how you go. Once I got to 7mg I reduced by 0.5mg per month.

But he is correct, it is a slow process.

Take care.

[SnazzyD]

Ah, the perennial question of when to compare yourself to others and when not. I guess if you’ve got to where you are flare free, then it’s ok for you. Most of the inflammatory products are made at night so I expect you’d feel the reduction more in the mornings when you need all hands to the pumps to cope with it.

[HeronNS]

Are you on two doses a day for a reason, or is this just the way you started out? Usually people only split the dose if the effects don't last through 24 hours. And as you've discovered tapering one dose rather than the other does seem to make a difference, and only the person taking the med knows which is going to be better.

[Robinsnest72 in reply to HeronNS]

I am taking 3mg around 8:30 in the evening and 8 mg about 6:15 in morning. Rhemy wanted me to go with the single dose in morning but I just ache to much if I do that. This works better for me. There is so much controversy on the dosing. When I was picking up my last pred the pharmacist was surprised that I was splitting the dose so she looked it up and said it was fine. When I get lower I will try to stay with morning hopefully.

[PMRpro Ambassador in reply to Robinsnest72]

The reason you can't reduce the later dose is probably because 2mg isn't quite enough to suppress the returning inflammation. The anti-inflammatory effect lasts 12-36 hours - you are obviously nearer the 12 hour end. There is still room for manoeuvre in the morning dose but not the evening one.

[Robinsnest72 in reply to PMRpro]

Thanks for the info. I am anxious to get off this stuff and when Insee people who are on lower doses and have had PMR same amount of time I wonder why he did not reduce faster.

[PMRpro Ambassador in reply to Robinsnest72]

Because more haste frequently means less speed. You need what you need to manage the inflammation and you will need it for as long as you need it. PMR is a chronic illness and the median duration of management with pred is 5.9 years - all the pred does is mop up the inflammation so you have a better quality of life in the meantime until the underlying autoimmune disorder burns out and goes into remission. Sometimes that is as soon as 2 years but that isn't usual. If you try to reduce too far, too fast or force a reduction all that will happen is the symptoms return. Which often means going back to a higher dose which is exactly what you don't want.

[Hidden in reply to PMRpro]

Btw prmpro....where's my ferrero?

[PMRpro Ambassador in reply to Hidden]

Thought YOU sent them to ME ...

[Hidden in reply to PMRpro]

😂😂😂

[Hidden in reply to Robinsnest72]

Tapering depends on a lot of factors. I was DX in June 2015 did the 1mg reduction to 8mg and it was too much too soon. I ended up back at 15mg by the December. I have been up and down a couple of times and currently at 6mg. I am a 12 hour person I think and have tried taking pred at all times split or otherwise. However full morning dose works for me(at the moment). The Rheumy said that "bigger" (he stuttered trying not to say the wrong thing), bigger people often find dose not enough once single figures come along. To be honest I am ok with staying at 6mg if I have to. It's a similar dose that my body would naturally produce so fair do's. So perhaps he is doing you a favour at the moment.

[PMRpro Ambassador]

Everyone is different!

How are you splitting the dose into two?

[Soraya_PMR]

If you have a Rheumy who favours a slower approach, thank your lucky stars and stay with them. It’s not a race!

My GP instructed a 5mg drop from 20 to 15mg. Guess where I ended up? Yup, back at 20mg.

My rheumi instructed a drop from 15 to 12.5, guess where I ended up? Yeah..... you guessed right! No reduction achieved.

That’s when I (and the expertise from the forum) took over. 1mg a month, and you know what? It’s worked, right down to 6mg, a few hiccups along the way but no disasters like the medics caused, just some sticking places where I needed a bit longer before reducing. Now I’m going 0.5mg a month as I couldn’t achieve 1mg.

Now go read that famous story about the tortoise and the hare! Seriously you can’t compare yourself to others, they may be taller, slimmer, fatter, have better absorption of pred, have a different cause for their PMR, do less exercise, have more stress, any or all of these in any combination. You are you! And if it ain’t broken, don’t fix it!

I undertook a recent experiment, moved my evening dosing to the morning. It really wasn’t a success, I’d have had to increase my dose if I’d stuck to mornings, but changed back to evenings and settled. The evening dose just seems to work better (for me) as it’s ready and waiting for the daily inflammation, and possibly has less to do as the inflammation doesn’t grab hold like it did with the morning dose.

Considered evening out your doses a bit? 5 nocté and 6 mané?

[PMRCanada in reply to Soraya_PMR]

Well said!

[Lejazzhot]

From the beginning i have split my dose taking part 12-1pm and the rest 12-2am. This suited my eating and sleeping habits and best controlled my symptoms. My rheumatologist would have preferred a single dose but it did not work well for me so i continued with 2. It also gives me flexibility to take from either dose when i taper; and it has made a difference from which dose i reduce. My doctor has also pushed me to taper more quickly than what is advised here. I was diagnosed w PMR mid january, stabilized at 20mg, tapered to 19mg feb 26 and have been reducing by 1mg since. Whew it does seem fast. It’s only because i follow this forum and trust the advice and personal experience of its members that i have been able to resist the rheumatologist’s schedule tapering more slowly and in smaller increments.

I have recently developed blurry vision, prednisone induced, which has made my rheumatologist more insistant i taper. Yes i want to taper, i will taper but on my schedule. Thank you everyone

[Robinsnest72 in reply to Lejazzhot]

What dose are you at now and how often do you reduce?

[Lejazzhot in reply to Robinsnest72]

Im now at 13 split in 2 doses. Because the 1mg decrease frm 14 has been the most stressful.not totally pain free but tolerable. Will stay here for a while. Usually i have stayed 3-7 days. It has been a week. Not rushing this.

[Purplecrow in reply to Lejazzhot]

👏🏽👏🏽👏🏽 Well done! We are our own best advocates!

[PMRCanada]

Yes, it’s hard not to get caught up in the “numbers”, and compare yourself with others who are similar re timelines of the condition.

I did this at the beginning but after my first flare (that put me back up at a higher dose for 6 weeks), and due to my needing to split my dose, I realized my tapering experience is unique to me (although there are commonalities with others).

I take a split dose 2/3 (6mg) at 2am and 1/3 (3mg) at 2pm, and as I lower I take turns reducing by .5mg from each dose as I lower. For instance I’m currently tapering down to 8.5mg from 9, so I take that .5mg from my 2pm dose. When I taper again, I’ll take the .5mg from the 2am dose.

Sounds like your body is letting you know when you need the higher dose.

[Noosat]

Do examine if there is change in your activity and/or diet. I was down to 3,5mg, feeling a little cramp in one leg at night, but when I got up to use bathroom it would go away. So thought I was doing Ok, but on Friday, this is Tuesday morning in U.S., found I had a leak under my kitchen sink. I managed to get down on my knees twice to mop up the water with a bath towel. It was really flooded. Then put container under leak until my son could come to repair. It was a lot of up and down using my arms and legs to push and pull. By Saturday, I had severe pain in left back/hip. Was it PMR returning or the usual arthritis? I took Tylenol which did not help. So by Monday night took .5mg more of prednisone before going to bed. I am hoping it will work, so that I don't have to increase dose, but if I have to, OK. I will start tapering when I think feasible. The old adage, "listen to your body"

[Lee1945]

Please do not try to rush your reductions or you may end up on a yo-yo reduction that will upset you.

Just reduce by 1 mg per month.

Be guided by your rheumatologist - he/she should be helping you.

It may seem to be taking a long time BUT it is vital that you do not rush.