Reporting back after hospital clinic and taper regime

[KinnearD]

Having limited response to nearly four weeks of 20mg Prednisone, I was referred to the hospital's medical assessment and planning unit this week Tuesday by my GP. My prednisone was temporarily increased last Saturday to 60mg plus omeprazole for stomach protection on the advice if the hospital medical consultant . No change first day on the 60mg however the next three days I had no pain or stiffness though feeling weirdly hyped and slow at the same time. The clinic came up with probable PMR and sent me home with the following taper regime. " 5 days × 40mg, 5 days × 20mg then 5 days x 15mg then reduce by 1mg each 1-2 weeks until stopped. If symptoms reoccur repeat CK and consider referral to neurology if raised ? Immune induced myonecrosis. If not raised refer back to medical for review" Bloods CK 39, CRP 10 down from 25, ESR 13, They did an addition blood test for PTH because of " hypercalcaiaemia 2. 62 slowly rising" that came negative. The suggestion to my GP was referral for CT in that case...not stated where to scan ( or endocrinology if positive). I take the prednisone around 2am with milk and the omeprazole. First day no symptoms, second and third ( today) some slight arm weighedness in the early evening. My GP agrees that the later taper is optimistic. She emailed me tonight to say that we will monitor the calcium along with CPR labs and suggests a blood test prior to each new taper. I'm keen to get off this higher pred. so wonder if it reasonable to expect to be able to get back to 20mg over these 10 days or is that going to be too quick. Also wondering about the Omeprazole. I know some of you just use milk as I was doing. Thoughts, advice welcome. I feel thankful that the GP is very collaborative

[SnazzyD]

Hello. Who am I to argue, but with a reduction like that, be prepared for some withdrawal which can make you feel achey painy amongst other things. I don’t get the logic. If they really think it is PMR I’m not sure how they think getting you off Pred in about 8 months will help a condition that lasts years not a months. The reasoning seems to be that if your symptoms come back, which is quite possible given the regime, then you don’t have it and they’ll look elsewhere, confusing. If they don’t think it is PMR really, why are they dabbling like this and whacking you up to a PMR dose twice over? Perhaps a discussion of the logic with your GP might be useful. Oh, the lively yet slow thing I got on high doses along with heavy limbs and I don’t have PMR. Anyway, PMR experts will be along soon.

[KinnearD in reply to SnazzyD]

Thank you. The good thing about the forum is become educated and being able to maintain healthy skepticism going through the motions and being able to argue for better options.

[PMRpro Ambassador]

Such high doses are a bit different, that's why they've said to use a PPI.

Why on earth did they go to 60mg? 20mg is relatively low and 25 is the top of the recommended range in the most recent Guidelines and 5mg is a lot in PMR. And that taper won't work if it is PMR - a high dose won't "cure" it, you should now be told to reduce to the lowest dose that works. Someone doesn't know a lot about PMR methinks...

CK isn't suddenly going to rise now you are on pred even if you did have myositis - which should have been ruled out at the start anyway.

I'd think that sort of fast taper back to 30mg is reasonable and then slow down a bit to 20mg since you didn't get far with 20mg to start with.

That is an adjusted calcium level I assume? It is still within some reference ranges - 2.2 to 2.7 mmol/L

[KinnearD in reply to PMRpro]

I'm appreciating that already I can read the proposed regime for PMR with skepticism thanks to the advice on the forum. The sticky part is the illusive diagnosis given my slow response to the early Pred dose. My GP is good...client centered. She wants a CPR test prior to the next taper so I thought I will continue the 60mg - 40mg for 6 days not 5 days since that is weekend. She will have time to email me Monday and perhaps we go down 10mg to 30mg Tuesday rather than 20mg to 20mg depending on symptoms and test result and continue cautiously. I'm very conscious of not having achieved symptom control at 20mg. An interesting dance this one. Not just disease and Pred, there's the "excuse me" cut ins from various interested and not so interested parties. I will not be agitating for referral back to the clinic. AAgain, thank you all for your input and time. I know my situation is very mild compared to what many have been through and are still facing. Actually, I have appreciated the benefits of the slowing down inherent in this illness. Days seen very precious. Self-care becomes paramount. Very different from my busy other-focused life as a professional woman and mother of a large family. More balance too in time.

[KinnearD in reply to PMRpro]

Hi there. I have followed the clinics taper from 60mg to 40mg for 5 days, I have then dropped 10mg to 30mg (rather than their recommended 20mg to 20mg) for the past 2 days. My CRP was normal yesterday. You had questioned the move to 20mg given I was not controlled at that level and I was noticing more stiffness with the second reduction. My doctor is happy for me to keep the taper slow with blood tests along the way. I'm thinking to try for 25mg by the end of this week and then the 10% maximum taper if I'm stable on 25mg. Does this seem too slow? How long should I stay on each of the doses from 25mg? Also at what point could I stop taking the Omeprazole given for high dose Pred? When is it no longer high dose? How do you stop it. ..heard that it shouldn't be stopped abruptly but it's just a single capsule. Thanks for your help!

[PMRpro Ambassador in reply to KinnearD]

When did the stiffness start? Was it immediately you dropped and then improved? If so it is more likely to be a reaction to the size of drop. So smaller would be better.

20mg is the border between moderate and high dose pred. I've never taken omeprazole at all and didn't ever have stomach problems - had a lot of others with 20mg methyl pred!!! It also depends on how long you have been on it - you could alternate days for a while and see how that goes and keep zantac or other remedies handy just in case.

How long at each dose? I think you need at least 3 weeks to be sure you are stable at a new dose. And remember that ESR/CRP may lag behind any return of inflammation and in some cases won't rise at all while you are on pred: symptoms rule.

[KinnearD in reply to PMRpro]

Thank you. Reassuring to be able to check in. I'll see how this week goes and hopefully the big doses have mopped up built up inflammation and I can be more controlled on a daily basis within the recommended range.

[KinnearD in reply to PMRpro]

Hi there.

I've reduced to 25mg for the past three days and note some extra weighiness in my arms though pretty good. Need rest. I'm lagging behind the clinics regime but my GP is relaxed and there's no need to refer back to them. I'm thinking to stay at the 25mg for at least another week before dropping 10%. It's good to sit within the guideline range even the upper end. Definitely better control of symptoms than on the early 20mg and less zonked out than 60mg, 40mg or 30mg. I think I need to gauge a benchmark idea of what control on PMR feels like experimentally before adding variables. I take zophiclone in the odd night or two when sleepiness catches up. I look at the tapering schedules however they seem for lower doses. I'm moving into 10% max reduction over 2-4 weeks and probably monthly bloods rather than the current weekly tests. Not sure of the question...more reassurance. Hope life is good for you.

[PMRpro Ambassador in reply to KinnearD]

It depends on the person - many people can drop 2mg-ish from one day to the next without any problem, others struggle and do better dropping the 2mg using the slow tapers at any level, still others struggle with 1mg even at 20+mg however they do it. You try - and if it doesn't work you go back and try a slower approach until you find one that works for you.

[SheffieldJane]

I love that you are getting such close goldstar attention. I can’t begin to understand the thinking behind your Pred regime though. 60 mgs would knock out pain from most conditions. My fingers are crossed that you get a definitive diagnosis and appropriate treatment very soon.

[tangocharlie]

It's taken me over two months to taper from 40 to 20 after a relapse so that reduction plan is possibly optimistic. The key is to listen to your body - it tells you what it needs. If it is PMR there is no way of knowing in advance how long you will have it- doctors always optimistically say 2 years but research shows the median time to be 5.9 years. So why they try and rush us off the only medication that works in the meantime I have never understood, other than that they are absolutely paranoid about the potential damage steroids may cause.