Tapering advice please

[Hedgehogfriend]

Hi, has anyone tried alternating Pred doses? I am currently tapering from 6mg to 5mg but felt rubbish on four consecutive days of 5mg so have gone back up to 6mg for a few days. Tapering gets very complicated so I wondered about a week of one day 6mg, one day 5mg. PMR symptoms are ok but the brain fog and tiredness on after a few days on 5mg were grim

[DorsetLady PMRGCAuk volunteer]

Usual advice at your doses - is only 0.5mg a time and one of these -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[singingloud]

Alternating doses hardly ever works well for most people, especially dropping a full mg.

At your dose level have you thought of using one of the tapering regimens list on the FAQ’s? I would suggest you consider the dead slow nearly stopped and go down only by .5mg. You don’t want to flare and have to go up 5mg and start over.

Pmrpro and the others will be along to give you excellent advice soon I’m sure.

Stay well.

[PMRpro Ambassador]

Alternating doses might be better and you do get to that at some point using a slowed taper plan. But the slowed tapers take even longer to get there so are gentler ...

[SnazzyD]

Another big fan of 0.5mg here.

[Katkin1]

I have tried alternating doses from 10 to 9 and back up to 10 etc during the week a couple of times and it doesn’t really work, despite a Rheumatologist telling me to do so. I do find Dorset Lady’s simple taper is much better. I know a lot of people recommend reducing by a half but, unfortunately, I cannot tolerate uncoated Pred, can’t cut the coated, and my doctor won’t give me 2.5mg Pred because it’s on their black list! I would try DL’s simple taper.

[Bluey-1 in reply to Katkin1]

Try cutting uncoated 1mg in half and swallow with yoghurt. I can’t take uncoated either. Gastro resistant is much better for me.

[Katkin1 in reply to Bluey-1]

Thanks Bluey-1. Are you OK with half a 1mg uncoated or do you still get side effects?

[lennysmummy in reply to Katkin1]

Why are 2.5mg on the black list but not the others?

[PMRpro Ambassador in reply to lennysmummy]

A good question since 2.5mg uncoated cost far more than 2.5mg enteric coated!!!

[Katkin1 in reply to lennysmummy]

No idea! I have queried it several times with both my doctor and Rheumatologist, just as recently as last summer. The gist of the reply is that it is too expensive, and I have argued this, to no avail!

[DorsetLady PMRGCAuk volunteer in reply to Katkin1]

Very often it's not the GP's decision - it comes from the local Trust... even if surgery is [allegedly] balancing it's own books... EC tablets are deemed not to be as effective as plain ones.

[Bluey-1]

I’m on 3.5mg at the moment, 3mg gastro resistant, 0.5mg uncoated - sent by mistake so using them up. No side effects, although I had many on higher doses.

[PMRrunner]

My rheumatologist suggest alternate day doses of 4mg and 3mg to in effect drop to 3.5mg. It wasn't for me so I cut 1mg and did a very slow taper from 4mg to 3.5mg. I'm now using the same method to drop to 3mg. We've finally agreed that I do whatever works for me and she's happy that I stay at a dose till I feel ready to taper again.

[Hidden]

Good Morning Hedgehogfriend. Alternate dosing using tablets of different strengths produces daily variations in the prednisolone peak blood level. This is not the best way to achieve good therapy. I use several tablets of different strengths to hit the desired dose, or for difficult target doses such as 1.75mg, since I don't mind the slight transient bitter taste, I use a tablet cutter. Infact I have just bought a new one from my local pharmacy for £5. You can also buy these cutters on line.

[Rynn33]

I am currently doing that based on prescription from Rheumy to take me from 5mg to zero ( coupled with Methotrexate). It seemed to be work ok for me anyway eg 4 mg and 5 mg alternate days for a month and now I’m just on 4 mg for a month before trying 3 mg and 4 mg alternate days in March. Not sure what it will be like when I get to 2mg but it might work for you up to a point.

[Body_bonkers]

Since reaching 10mg I’ve switched to alternating doses dropping 1mg every five weeks as per DL plan. Struggling with it a bit to be honest as found it easier to tell if dose was right on the straight drops but will persevere

[DorsetLady PMRGCAuk volunteer in reply to Body_bonkers]

If you are struggling with alternate days why persevere with it… do what easiest for you.

[Body_bonkers in reply to DorsetLady]

Just presumed this was better for the adrenal glands and I'm happy to give them all the help they need !

[DorsetLady PMRGCAuk volunteer in reply to Body_bonkers]

Might be - not totally convinced tbh. But whilst you’re waiting for them to wake up might just as well be as comfy as possible in my book.

[Greytree]

Toggle back and forth by 1/2 mg when you are at 5. That’s what I did. Don’t know if this was right but I did a month before dropping down again. Am now at 1mg after months and months. Am worried about the next. Just started toggling 1 with 1/2 today! FYI I also am getting monthly Actemra infusions!

[Boss302Fan]

Take a look at DL’s 5-7 week Simple Taper and follow it. New dose should be not less than 0.9 x Old Dose. No shortcuts, no skipping weeks. If using non-enteric coated Prednisone can cut 1 mg tablets in half for 0.5 mg increments or quarters for 0.25 mg increments. 5 mg cut in half yields 2.5 mg, etc., you can add pills together to get target dose. You may be able to do 1 mg decreases over a 5 week period for old doses between 7-10 mg, 0.5 mg decreases for old doses between 3.5-6 mg, and 0.25 mg decreases starting at old doses of 3 mg or less. Doing 2.5 mg decreases for 12.5 - 20 mg old dose? Right, good luck with that! No greater than 10% decreases.

Obviously can’t do steps less than 0.25 mg, but can reduce the size of steps to that fraction.

Remember, can’t emphasize this enough, you are not treating the disease. Your goal is trying to find the disease’s current level of activity and match it with the amount of prednisone needed to handle the resultant inflammation. The disease could reach a plateau and stay at the same level of activity for months. It could decrease in activity or even increase in activity. The larger the dose reduction not only the greater chance of going too low, but also the magnitude of the deficient and harder it is to get back on track or even figuring out where the level of disease is. This going all over the place seems to be a common theme or complaining because cannot taper without a flare. To the later I say keep reducing the size of the step and if you can’t go below, then that’s the current level of activity. Stay at the dose that works for 4 weeks, and try again, at 0.5 or even 0.25 mg decrease. If flare again, then it is, what it is, go back up to where there’s no pain again and repeat. Everyone is different, there is no magic number with how long you’ll have the disease. Your Rheumy can throw out all kinds of numbers, 2 yrs, 5-6 yrs and you know what, you’ll find people who still have the disease after 10 yrs. They cannot predict, they can only guess using some statistical studies and then it’s just probabilities. My Rheumy kept after me because felt I should have been off Pred in 2 years, because he read it in some study. It was 2.5 yrs. Know what, after remission it may come back. Mine hasn’t yet, but…

Lastly, pace yourself. Reduce the intensity of your hobbies or whatever, and shorten the duration. If you try to continue your lifestyle (if very active) the way you did before, trust me, it’s eventually is going to come back and bite you. Don’t give it up, just reduce.

Just my humble opinion.

Good Luck.

[Hedgehogfriend in reply to Boss302Fan]

Thank you, that is very sensible

[Paulagcl]

I am tapering with alternating doses and so far it works for me. Then on the first few days of the lower dose, which I have been staying on for a couple of weeks before a couple more weeks of taper, I am very tired but by the end of a week feel better, so I guess the adrenals kick in a little more each time. So far, anyway. Everyone's body is different.