Dear PMR, Could I ask a question about dosage, tapering and possible relapse. My original symptoms were triggered, I think, a very, very bad chest infection 18 months ago where I was very ill for a month and a half. I appeared to recover, but then and after 8 months, these symptoms came about suddenly - 1Tightness ( in chest), especially towards the top of my chest, breathless, 2'Heady’, headache (esp lying down) and brain fog, 3Intermittent weakness in leg and arm - right side, 4Pain in ankles and wrists after getting up, holding books, 5Fatigue, could hardly raise my foot from a dangle at the end of my foot, 6Nausea, dizziness - regular as clockwork at 11:30am, 7Clumsiness, tripping, and dropped innumerable things, 8General nasty ‘fluey' malaise feeling. This went on for 6 months - I was put on Medrol, 15 mgs, in Sept 2020 (equiv to 20 mgs of pred, apparently), in Corfu. Much, much better! Optimistic, hardly any pain, coordination fine, no nausea (thank God) more energy (not perfect but good), head clear, but with some sleeplessness. Miracle! I now live in Malta where my Rheumy put me on 20 mgs, On 1stDec'20, I reduced to 18.75, and last week to 17.5 - strange sizes but dictated by the splittability of tabs. I have some inflammation markers, but nothing exorbitant. The first taper seemed okayish to 18.75, but the last few days I appear to have say 40% of my symptoms back after 17.5%, 1stJan'21. Should I wait to see if it's withdrawal? If so how long? And if the withdrawal does not resolve, how high do I have to go to get back on track to feeling better till I try again - do I have to overshoot 20 mgs to reset, would you say? I guess it could be a regular cold ... but how would I disentangle a cold from the symptoms above. That is a difficult one! Sorry - I know this is a re-run of many people's dilemmas and queries. But any advice would be gratefully received. Yours, T
Taper?- small reductions but is in relapse or wit... - PMRGCAuk
Taper?- small reductions but is in relapse or withdrawal ?
What are the readings for the markers? If they are raised you maybe need to be more patient before reducing because in theory you were at the right sort of dose for it to be a starting dose that would achieve the result you got.
Are you still on Medrol? Or does Malta use prednisone/prednisolone? I was switched from prednisolone to Medrol at one point and despite it supposedly being stronger at the same dose, at one point I had gone up to 20mg but it took until the afternoon to work and even then was not as effective as 15mg of pred had been. When I was finally switched to prednisone, I went from a dodgy result and adverse effects with 20mg Medrol to the original miracle with 15mg pred and no adverse effects.
Whichever way round it is, it shows that not all patients do the same on different corticosteroids.
PS - where in Malta do you live?
Thanks for prompt answer.Medrol (16 mgs in fact) worked well for me, but they don't do it here in Malta. So Prednisolone.
I am not having tests done at each taper point - partly because I think the effect of the steroid response seems more genuine an indicator for me than bloods for the suitability of the therapy. Furthermore, I am 'shielding' so that project will have to be put off for the medium term.
March 2020 CRP = .4 .
This (abv) would be the month before my PMR collapse.
July, 2020 Ferritin = 502. CRP = 5 . Sedimentation = 2mm 1st hour .
Started Medrol in Sept 2020. Dramatic 'clinical' improvement.
Funny that about the reverse working for you with Medrol - but, like you I am happy to stick with what I can measure against how I feel.
In general, I am relatively unaffected in terms of the scary side effects from steroids; so far. No weight gain (I am restrained), blood sugar within normal, no depression (much better than when ill), so I am rather tempted to go back to 20 mgs Prednisolone (Wockhardt is manufacturer) and do battle with Rheumy who is going to try to work me on down, and hold off until the underlying illness stops its attention-seeking behaviour to this extent, and then start off downward.
I know the bloods are sketchy. They keep wanting to take me off meds, so they can get a 'baseline' - nice for them but which only means misery for me.
Thanks again. T
The baseline now is pretty meaningless and taking you off meds would risk a major flare which is then likely to be more difficult to get under control. The ESR is low unless that is a typo. What is the range at that lab for CRP, do you know? The ferritin is high - that is the only raised acute phase marker I have.
What concerns me most is wondering if this is the a/i bit ramping up for GCA - the dose isn't enough to prevent that - so do keep an eye out.
If it were withdrawal it is more likely to have started immediately you changed the dose and then it would improve over the following couple of weeks. The delay suggests you are now at too low a dose.
Funny - I was daydreaming this morning about the icecream shop in Bugibba ...
A/i What is it? And I haven’t researched GCA at all. When shall I start to worry about GCA in terms of markers and signs. Does GCA likely go into remission after time too. Hope so. I am in Gozo. Gharb & Santa Lucija. Do you know it. Thanks again. Tim
Ah. A/i is anti inflammatory? What should I look out for? Thanks for caring, much appreciated. Why were you in Malta? When? Valletta is amazing now. T
What do you think. Should I now go back to 20mgs and watch for recovery and be alert to GCA signs? T
GCA often goes into remission quicker than PMR - which is the good news. If you get headache, scalp pain, visual effects, jaw pain when chewing then get hold of the rheumy asap - there are other symptoms but they are the most likely. PMR can also be a symptom - although by no means all GCA patients have PMR nor do all PMR patients progress to GCA.
I think you need to at least speak to the rheumy and tell him about the reduction problems. It is problematic when you only get 5mg tablets as the steps have eto be quite big. This might help:
healthunlocked.com/pmrgcauk...
It's 2 years since our last trip - we have a club membership which we'd intended using for winter breaks but my husband had been too ill to go in 2019 and 2020 disappeared even if he hadn't been ill! We came to Gozo for a day but there were a lot of delays which rather spoiled it and I would love to go back. I like Malta - love the food, especially the bread, and enjoy the easy availability of Brit food (well, cheese really but being there before xmas had its good points too) as I live in Italy.
Great, thanks. I am going to go back up for a bit and put off reduction for 2/3 months. I live between Corfù and Malta. Houses are quite cold in winter here! Otherwise no complaints at all. I hope things improve with your husband, and us, and the world! T
Like southern Italy - they just don't expect cold! OTOH, I live in the mountains up north - it was -20C overnight and -7C at best during the day. I haven't turned up the heating and am sitting here with bare feet and wearing a short-sleeved cotton shirt ...
Blimey! OH must be doing his nut (or are you in another room)? I know he feels the cold.
I have tights, a long sleeved jumper and thick socks on. It's 'freezing' outside - 3+!!😂
He has his room with the heating on full blast - I can't go in there, it just makes me feel ill!
He knows how to get peace if he wants it then.😂😂
He lives in there - emerges for essentials. Always did ...
I think the maximum measurable reading at the Lab is 5 for CRP.
Not horrendous then. People sometimes get CRPs in the hundreds but 20 to 50 isn't unusual.
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