How can 1/2mg make such a difference?

[Attic]

Hi everyone. On Pred since 2014 and with many ups and downs got down to 1/2mg. I startled to feel symptoms when I got down to 1mg but carried on doing the dead slow method until I was on 1/2mg.

If all had gone well I would have been off altogether by next week, but it has gone completely pear shaped. I have a lot of pain and stiffness and have been waking myself up crying with the pain in my sleep.

I just don't understand how 1/2mg can make so much difference.

Thank you for listening, Jenny x

[Hidden]

Attic, 1/2mg can make a difference up at 10mg but once you are at 1mg dropping to half is a 50% drop........

Truthfully, if you started to feel symptoms at 1mg that is where you should have stopped.

Consider going back to 1mg or even 2mg, stay there for a while & then try DS Taper again by 0.5mg drop but STOP if the pain comes back & go back up to where you felt OK.

You are so low now, in the scheme of things 1mg or 2mg is doing you more good than risk of side effects.

Kind Regards

MrsN

[Constance13]

I have tried x times to go down to 3 1/2. I have been on 4 mg for over a year. I've just given up! I'll just stick on 4mg.

[PMRpro Ambassador]

I wrote a post with the same title about 9 years ago! But that was the difference between 17mg and 16mg over 2 days!

It is very simple: either you are on enough pred to mop up all the inflammation created each day or you are not. Just as if you are using an old-fashioned weighing scales, a single straw can be the difference between it sitting balanced nicely and dropping down on the heavier side. 1/2mg can be just keeping it OK but less leaves a tiny bit of leftover inflammation. Then, like a slightly dripping tap will fill a bucket in time and overflow, slowly the level of inflammation builds up until it is enough to cause symptoms.

I'm afraid this is NEVER a case of relentlessly reduce steadily in a way that works for you and get to zero - you are looking for the lowest dose that does the job. Anything under 5mg is a superb result and it sounds as it is 2mg or less for you. Don't be disappointed - be pleased it has gone so well so far.

Get a hold of it quickly: take a few days of 5mg to clear it out and if that works, drop back to 2mg and stay there for a couple of months before trying reducing again. It might not work the first few times - but eventually it will. And as MrsN says - 2mg is such a low dose it is not doing any harm at all.

[Jim-CJ in reply to PMRpro]

Hi PMRpro,

At what dose of Prednisone does no harm?

Thanks,

Jim & CJ

[PMRpro Ambassador in reply to Jim-CJ]

There is no answer to that - I have no identifiable damage at doses that have been over 10mg over years. Others have problems at 5mg.

But theoretically, below about 7.5mg you are taking a similar amount of corticosteroid to what the body produces naturally. It is excess of steroid that causes problems.

[Jim-CJ in reply to PMRpro]

Thanks PMRpro,

My wife is holding at 4 mgs (since early September, 2019) until the end of the year, down from 20 mgs, using dead slow and Actemra for 1 1/2 years. Has done well with weight loss using KETO and has shown little to no GCA symptoms. Maybe we just stay at 4 mgs?

[Maisie1958]

Jenny, I am sorry to hear this and certainly can sympathise. I’ve been hovering around the 1mg daily for the last two years-doing fine but any lower and the PMR comes back within a few weeks. I still can’t believe how such a tiny amount can make such a difference to my quality of life but think definitely have to accept 0.5mg does....even though I keep on making the same mistake. Please don’t do as I do. Hope a few days on 5mg or so and then reducing as PMRpro suggests makes a big difference to your pain. All good wishes x

[HeronNS]

As I've been telling people the last few weeks, I have been doing each step of the DSNS taper twice over as I reduce from 1.5 to 1. I also followed the same protocol from 2.5 to 2 and 2 to 1.5. Before that I couldn't taper below 2.5. It takes three months to complete a .5 taper.

[Attic]

Hi everyone,thank you for taking the time to reply to me. I have taken 5mg for the last 2 days and am feeling a lot better.

I will reduce over next few days back down to 1mg and stay there for a while.

The reason I seem in a rush is my Doctor who is putting pressure on me.

He blames everything on Pred and said that he wanted me off by August. I will just go and see another Doctor, I think.

Thank you for listening, Jenny x

[PMRpro Ambassador in reply to Attic]

"I will just go and see another Doctor, I think."

A good move I think. The other one wants his head read as my mother would have said. There is no justification at all for anyone to worry about a patient on a dose of 2mg or less ...

[Dream21]

I have asked the same questions. My body is letting me know that I need to go back to the previous higher dose. I agree, it seems minuscule.