typical symptoms?

[Loveopera]

I am again trying to get off prednisolone and after a few ups snd downs am nearly there after starting them in June 2020 at 15mg. I have been following Dorset Lady’s plan , which has worked very well but had to go back up a couple of times with pains returning..

Starting again at 3mg I am now down to 2 mg and was hoping Id be done in a couple of months! However whilst there is no joint pain but I have this last few days been feeling really lightheaded halfway through day with blurred vision and sleeping badly ( nocturia and a recent UTI doesn't help!) so I am feeling extremely fatigued and altogether fed up.

I have to honest and say I was probably trying to hurry up the process and maybe being a bit erratic with my plan- but are these symptoms typical even at thus stage of withdrawal after this length of time?

What next? !

[PMRpro Ambassador]

At this stage the slow taper is required because your adrenal glands must wake up and start to produce cortisol to replace the reduced amount of pred as essential corticosteroid. What you describe sounds fairly typical of adrenal insufficiency. If you go to the FAQs there is a lot of simple explanation about the adrenals, what they do and what happens on pred.

We KNOW people want off pred. We KNOW people think that a low dose like this isn't doing anything. But that is a major error in thinking - and one that even doctors make!!

It is well known it isn't over until the fat lady sings - but in PMR it isn't over until you have slowly tapered to zero and stayed there for 6 months without a return of symptoms. Even 1/2mg pred can be enough to hold a very low disease activity at bay. And it is said that it takes a full year after stopping pred altogether before adrenal function is consistent and reliable. There may still be a fair way to go and this isn't the moment to speed up.

[DorsetLady PMRGCAuk volunteer]

Would say most of your symptoms are adrenals stuttering -so another very good reason to go slowly. .. very slowly..

As many have discovered the last few doses of Pred are very often the most difficult-virtually no surplus Pred to play with and adrenal dithering.

Stop thinking about the end date -and concentrate on the current situation. I’d stay at 2mg for a couple of months and let adrenals “catch up” snd then 0.5 mg a time -and maybe lengthen the taper -that’s why there are 3 options..

Info on adrenals -and might be worth asking for cortisol test from GP -

healthunlocked.com/pmrgcauk...

[piglette]

As the others say it us your adrenal glands waking up. They do need quite a time to get back to normal. Just take it slowly and reduce say 0.5mg when you feel better.

[Bcol]

As already said, this is not the time to be rushing things, but, the time to take things really slowly with 0.5mg reductions. I'm sure there are some on forum who actually taper down in 0.25mg reductions when they are at this stage. If you haven't got one it's time to invest in a pill cutter. If you can get 2.5mg tablets then halving them to give you 1.25mg can be useful. They are expensive though so doc might not be too keen, but worth trying.

[KerryIreland]

Hi Loveopera I am at a similar stage, having started on 15mg in March 2020 and had to increase twice. I’m now down to 1.5mg and staying there for a couple of months if all goes well. But I’m decreasing a quarter each time. I bought a pill-cutter on line and it works well even though the pieces are tiny!

[Viveka]

I've been going down by quarters since 2mg. I know it takes ages but at these low doses pred isn't doing any harm and it is better to be safe than sorry. I think it's kinder to adrenals too.

[CarolF1312]

I started on Pred same time as you after having symptoms for about 6 months prior.I'm currently down to 1/2mg. But have found the last 6 months taper from 2mg very difficult with various issues, including sudden fatigue, and onset of what I'm told is OA in my hands/ wrists. Nevertheless, I'm now stable at 1/2mg 🤞and intend to stay there for another month as I'm due to travel long haul soon. I hope you manage to get through this difficult stage but definitely agree with others. Take it slowly !

[PMRpro Ambassador in reply to CarolF1312]

It might be OA - but PMR can also cause wrist pain.

[CarolF1312 in reply to PMRpro]

That's my fear ! However I had xrays and Rheumy insists it's OA. Strange as I didn't have this problem pre PMR ? At present its not getting any worse and pain remains solely in wrists/hands. Keeping fingers crossed that I have OA rather than PMR is strange but true !

[PMRpro Ambassador in reply to CarolF1312]

A lot of them don't know the difference!

[Loveopera]

Thank you everyone! Ill stop rushing to get off Pred - its clearly more of an issue than I imagined! Slowly does it.. and yes Ive got a pill cutter - a good buy from Amazon for once!!