Now Off Prednisolone

[Callymac]

I was diagnosed with PMR August 2020. Came off prednisolone February 2022 using the slow tapering method. Everything was fine and then I got Covid. I didn’t suffer much but over the last month things have deteriorated. It’s not been as bad as way back at the beginning of PMR but similar. Aching joints and muscles, constant fatigue and lots of brain fog! However I would like to avoid going back onto steroids.

Our GP practice is struggling at the moment and it was suggested in February I should make a face to face appointment with the GP at the beginning of June to see how I was. Do you think this may be Covid related and that things will improve with time?

[PMRpro Ambassador]

You may want to avoid going back onto steroids but what you describe is absolutely typical of someone who reduces to zero and it all looks fine - for a few months - but there is still a very low level of disease activity ongoing and, in the same way a dripping tap fills a bucket and overflows sooner or later, the little bit of inflammation created each day in the absence of pred builds up day by day until there is enough to cause symptoms. And then it builds from a little puddle to a big one.

You were never heading relentlessly to zero - you were looking for the lowest effective dose and for you that is almost certainly well below 5mg/day, possibly even 1mg but zero is a step too far. We often say that that last few mg should take a long long time: a couple of months at 2mg, similar at 1.5mg, even longer at 1mg, longer still at 1/2mg - and even then, you may find that zero doesn't work.

The longer you wait now, the higher the dose you may end up returning to. If it were me, I'd take 5mg for a week and drop to 1mg and see if that does the job. If it does - try 1/2mg. And when you try to get off 1/2mg - treat zero as the new dose and aim to take months to get off it.

It doesn't really matter WHY it is happening - and be honest, it isn't IMPROVING is it? It is getting worse. It IS happening, it looks as if the inflammation is building up again. So wiping up that puddle will make life better - if the 5mg of pred for a week doesn't make you feel better you can discuss it with the GP when you can get a f2f appointment but if it does, then you have evidence that it is due to inflammation and pred helps. At that sort of dose it is harmless - but increasing inflammation in the body isn't.

[Callymac in reply to PMRpro]

Thank you so much for your prompt reply. This is all so helpful. When you say take 5 mg for a week does that mean I then drop to 4mg again for a week and so on til I get to 1mg or do I go directly to 1mg after 5 mg?

This forum has been a life saver for me over the last 20 months. Advice and support has been fantastic and I’ve learnt so much. I’m very grateful.

[PMRpro Ambassador in reply to Callymac]

No no - just take 5mg for 7 days or so and then drop straight back to your chosen lower dose the next day. You might notice it but I doubt it and having been off pred for a while it won't have affected the level of adranal function you were at, wasn't long enough or high enough.

This is in the hoe that having got to 1mg before it was still enough - it might turn out differently but cross that bridge if you get to it.

[Callymac in reply to PMRpro]

Thanks for that. Really helpful.

[squashie]

I had the same experience. On zero for nearly 6 months after 3 years, then covid, then returning stiffness. I took 5mg for a few days, and have progressed to 2mg over 3 weeks. It is working well. I see my GP next week to work out where to from here.

I must say, the improvement has been so noticeable I suspect I had low level symptoms even before covid although not obvious enough to ring any bells.

[Callymac in reply to squashie]

Good to know I’m not alone!

[PMRpro Ambassador in reply to squashie]

That happens a lot - trouble is, sometimes it can just be the adrenals readjusting to no pred, But that should improve, if it gets worse it is more likely the PMR

[Carver63]

I have a similar path. Diag May 2020 24 month of roller coaster Pred, successful taper to zero as of today April29. good blood indicators for 6 months at 5 -0. 1 yr on Actemra. now about to go off Actemra. Like you, April 1 i contracted Covid had a battle with Blood oxygen but now recovering well and feeling great. I hope i am off Pred for life but i take it from on day to the next. I wish you the best as i can relate