Prednisolone for 14 months.

Started on prednisolone at 25mg & reduced to 15mg after a couple of months. Found it difficult to reduce at that rate after reaching 15.

Now down to 12mg after reducing by just 1mg every 5 weeks & hope this rate will be effective, although may reduce the rate as the dose gets lower.

Any comments or tips welcome in my quest to reduce to the magic 0mg.

I do however get slight sight disturbance & mild neck pain.

Live in the Bedfordshire countryside.

[Hidden]

The first tip...give up the magic quest...seriously it's best to live now and not think about zero until you are thereabouts. You are trying to find the dose that keeps symptoms away. Here's a link to the dead slow nearly stop tapering plans.

healthunlocked.com/pmrgcauk...

Has your vision been blurred by pred?? And was neck pain part of PMR pain (mine was...partially) or us it new? I suspect there's concern re GCA? Just keep a watch and if the pain it stiffness or your own PMR conditions start to reappear...stop and go back a step to where it wasn't.

Good luck on you new quest...getting to the dose you need until PMR starts to burn out...👍😉

[Hidden in reply to Hidden]

Thanks for your input.

Keep safe,

I wish you well.

[PMRpro Ambassador]

Don't try to fix your eyes on the finish line - because it is almost certainly at the other end of a longish tunnel which has at least one bend in it. If you are lucky it won't be a sharp one that takes you in the other direction!

Are you saying you dropped from 25 to 15mg in one step? How did that go? You are now doing the right thing - 1mg a month is about right now. From 10mg you may manage 1mg a month, some do, especially using a slowed taper, but if you need to don't reject the idea of 1/2mg reductions.

[Hidden in reply to PMRpro]

No dropped from 25 to 15 in a couple of months with little withdrawra

[PMRpro Ambassador in reply to Hidden]

Figures - because you obviously do only need a very low dose it was probably quite easy to reduce. You have done really well - I do hope it continues

[Hidden in reply to PMRpro]

Thanks,

Find your comments encouraging.

Good Luck,

Stay Safe.

[HeronNS]

The lower you get the slower you should go. I was able to reduce by 1 mg at a time, although I started dead slow neary stop taper at 10 mg, but even though I was doing well I slowed down even more at 7 mg. Now as I hopefully approach zero (five yeras later) I am doing each stage of the dead slow taper twice over, so it takes three months to reduce by 1/2 mg.

It isn't slow if it works!

[Openchamp]

Yes you can’t say for sure when you will succeed. I was very fit and it took 2 1/2 yrs with 3 or 4 partial successes before one day I forgot my tablets in the the Welsh mountains and found I was ok after having a tablet cutter and was on1.75 mg .I,d tried to come off this 3 or weeks before. Then this time

I realised after about 2 wks of no muscle ache that I was free.

So just keep trying to come down but accept it when you are not free.

I’m free now and I know what a blight it was .Have faith and good luck

[Dressage_Diva]

Hello, I agree with the previous comment don't focus on reaching 0 as it can be quite devastating mentally when it doesn't work out.

I started on 60mg in November 2017 and thought I would be off it in 12 months. I battled to get off it throughout 2018 and 2019 and got down to 3mg by October 2019 whilst also taking Methotrexate (a chemotherapy drug) but I was in so much pain in my spine, hips and various joints that a PET scan revealed that the Methotrexate was doing nothing and I was having a massive flare-up of the GCA so I had to increase immediately to 40mg.

Mentally, it floored me. I felt as though I was going to be on it forever but I was approved for funding to go on a new weekly Tocilizumab injection for 12 months which I started in February.

There is a 50:50 chance it will work and I will be off Prednisalone after 6 months. Fingers crossed but I won't hold my breath. Take each day as it comes and when you feel good make the most of it and keep smiling - even though you are probably having to self-isolate for 12 weeks at the moment!

Take care

[Hidden in reply to Dressage_Diva]

Hi, it sounds like you have been through the mill!

It will be interesting to see how actemra works. It is important to be realistic about the success rate isn't it. The impact can be devastating if you set a rigid time line for getting off pred.

I hope you are in the 50% that get the GCA controlled and into remission (but wish it was 100%). Good luck. Please let us know how you get on if you can. 🌻