My theory on tapering prednisone

I have done extensive research on Corticosteroids. My wife has a brain tumor. Dex is the drug of choice. They dont worry about the dosages its a terminal cancer. I have PMR. Ten months is or can be about the length time PMR can be active. Might be more might be less in some people. If you had any markers when diagnosed you should check those monthly. CRP and Sed Rate particularly. My PMR was not active in 6 months. Anyone on prednisone for more than 2 weeks has started to tell your body to stop producing cortisol through the pituitary gland. You can probably taper 1mg month if no active PMR until you reach about 5-8mg then your exactly right in my opinion. Your body then needs to slowly restart. Most on here hit 5mg wall. I hit the 5mg wall. Then the taper causes inflammation and pain which restarts the PMR markers. Its a never ending cycle. Meanwhile prednisone is wrecking your body. I think your doing great trying to get off. Everyone is different. The 10 months is not bad. Your body probably has not forgot. You will start to feel some pain or discomfort but that will settle down. There is another thread discussing everyone's life after PMR. The older you are seems our lives did not go back to the old days. But try to get prednisone free. Work through the discomfort. I have had 2 flares. The PMR is easy to see after diagnosed the first time. I went on a 5 day pack of prednisone. Fixed it.

I am back to 5 mg. now . After getting down to 3 mg. I went back to total body pain non-stop even though my doctor took the tapering very slowly. But it sounds like I might have to go even slower to get off this Prednisone. Thanks for the info.

you got this. The brain tumor advocates for reducing claim to start taking Boswellia, higher vit C and higher B vit. I was giving my wife an IV called the Myers cocktail. Boswellia comes in 500mg capsules. They say you need about 4000mg day. My wife could not stomach that many a day.

My experience with GCA and tapering has been different. I was prescribed 40 mg prednisone, then tapered 5 mg every week, until at the lower dosage, then the taper was incremental.
After a year and a half off Prednisone, I had a GCA relapse. Back up to 40 mg prednisone. I proposed tapering by 2.5 mg every week, but my Rheumatologist told me to taper down 5 mg every week. He said a slower taper would expose me to "steroid toxicity" over time.

The doctor had me dropping .5mg every two weeks(ish). After 5mg, though, arm pain started returning and became stronger. At 4mg, I backed up to 5mg for a day, then started at 4.75. No more pain. The reduction period became .25mg every 10 days, which worked very well for me and recently became once a week. (4.75 = half 5mg + quarter 5mg + 1mg.) Unfortunately, only 5mg and 1mg are available here.

I've been trying to keep the drop to 10% or less each week, but once you get into the 2.5mg range... Anyway, it's fiddly, but the 5mg pills can be cut into eighths (.625mg each); oh so many numerical combinations. I haven't tried cutting the 1mg by more than half - yet. Start was 25mg almost a year ago. I'm at 1.25mg going to 1mg tomorrow, so hopefully my prednisone journey will finish this month.

Actually, I've re-thought that drop from 1.25mg to 1mg planned to begin this morning. Too steep for comfort. For a few days at least, I'm going with 1.125 (half of a 1mg, 1/8 of 5mg).
Don't know why I didn't get better grades in math.

I had severe inflammation and tried various Pred tapering schedules but the only one that works for me is 0.25mg reductions every 7 to 10 days depending on level of pain. Down from 20mg to 5.5mg in 9mths. Hydroxychloroquine is helping calm things down as well.

In the beginning when I knew very little I had a GP who told me to decrease prednisolone 15mg to 10mg in 4 weeks and then 1mg per month. Not surprisingly I flared twice. A subsequent GP told me to alternate 11-10 for 2 weeks and then go down to 10. I tried this but thought it probably better for my body if I just decreased monthly in 0.5mg doses. I managed fine until 7mg when I took it more gradually and now have decreased by 0.25mg monthly to 5mg and so far so good. Thankfully I can just get repeat prescriptions without a query. I have no idea why there is this push to get us off steroids as fast as possible with unachievable regimes. Nobody wants to be on them but we can only go at the pace our disease dictates. Best wishes to everyone here with PMR. It is so helpful to discuss with others who understand.

Steroids are a life altering drug both good and bad. So many hidden issues your body will develop using steroids. In a relatively short amount of time. Most Dr will start a steroid and immediately start to discuss tapering. They should be checking if your PMR markers are still elevated. That should help them get you to the 10mg fairly quickly. Thats why they say 1mg until then. If your PMR markers are still elevated it would be hard to taper even to 10mg. If you have been on steroids longer than 2 weeks your body has already started to shutdown cortisol production. You dont need it since your taking the steroid. Below 10mg and particularly below 5mg you have to coax your body back to start cortisol. The longer on steroids the harder this is to do. The disease no longer dictates the taper. Your body is short of cortisol and reacts by restarting the PMR symptoms. Pain, discomfort, nausea, flu like. So you increase your steroids and go into a never ending cycle. You may not ever get off. If you have been on for awhile ask about newer drugs that will treat some of the symptoms of PMR while in this painful taper. Kevzara is one. If the Dr doesnt get you off steroids you will be forced to be treated for something else probably the rest of your life. You appear to be lucky. Your right go slow. Your at the taper wall.

I agree the tapering is a real challenge. I have been on prednisone for almost a year now for PMR, and the lowest I've been able to taper to so far is 10 mg from 15 mg. It's so discouraging. I'm very concerned about what this long-term prednisone use is doing to my body...but it seems I either have to take it, or have no quality of life due to debilitating pain and stiffness. In other words, "pick your poison". I have been tapering by 1 mg per month for the last six months, but when I got down to 9 mg, the pain started to come back in an unacceptable way within the week, so I went back up to 11 mg and am now working back down to 10 mg. I'll try tapering by 1/2 mg per month instead of 1 mg, and see if that works better. I don't see my doctor again until the end of July.