Wanting to present argument for long term preds, (started at 40mg 2weeks ago) & slow taper to doc....

[caterpillar]

Hi fellow Pollys,

It has taken over 2 years to get a PMR diagnosis... had to resort to a private GP (UK)...

I was crippled with pain in my shoulders, she prescribed 30mg over 3 day’s, and tapering down very quickly to 5mg...

This didn’t touch the sides... I upped the dose to 40mg, over the last 2weeks, which is working beautifully , every time I have tried to taper down, within a day, am in agony in shoulders again... ... I feel fantastic, and, as yet, only good reactions to the Pred...

I am due to see my GP again, in a couple of days, and I want to present to her a case for staying longer on the high dose and tapering very slowly, due to the fact I was in agony for such a long time, that my body needs the pain rest now... I am a little like a rhino, and only high doses of meds work on me, from everything to pain killers , double doses of anaesthetic etc...

I want to go in prepared to my appointment, as I am terrified of losing the life I have reclaimed over the last two weeks... at the moment my body feels as though it is working at its optimum balance (albeit on 40mg of Pred)

Does everyone get side affects?

Any help with an argument for prolonged preds , with very slow taper please?

Thanks in advance Polly peeps.... 🙏🏻👍

[PMRpro Ambassador]

That is a VERY high dose for PMR - it is the dose needed for GCA without visual symptoms. Yes, I take your point that you always need a lot - but even so, you need the input of a rheumatologist I think. You could well be a "50% person" - the bioavailability of pred varies from 50-90%, the amount of the dose you actually absorb, and you could well be someone who needs a high dose to start with.

Your private GP - who presumably charged you healthily for the privilege - might at least have googled how to manage PMR. No-one, but no-one, has ever suggested a 3-day taper for any purpose in PMR! You needed perhaps 25-30mg over weeks before being able to reduce the dose:

rheumatology.org/Portals/0/...

Recommendations 2 and 3.

By no means everyone responds instantly (as I did) and speed of response has little to do with previous history - I had had PMR with quite severe pain for over 5 years but still responded in under 6 hours to 15mg.

At normal PMR doses no, many people do not have much in the way of side effects. Others do - yet another example of how we all differ.

But I'm not quite clear why you speak of arguing for "prolonged preds" - PMR is accepted to last at least up to 2 years, the median duration of pred management is nearly 6 years:

medpagetoday.com/rheumatolo...

"The mean initial dosage of prednisone was 16.9 mg/day; at 1 year, the mean dosage was 5.9 mg/day. Only 19% of patients discontinued glucocorticoids by 1 year after the onset of PMR, 37% discontinued by 2 years, and 50% discontinued by 5 years. Only 58% discontinued glucocorticoid use by 10 years after disease onset. At 10 years, however, at least 97% of patients reached a glucocorticoid dose of <5 mg for 6 months."

Your shoulder problems need imaging investigation - to establish the extent of the bursitis which is what is probably causing the severe pain or to rule out other causes. It took up to 6 months at 10-15mg for my hip bursitis to disappear. An injection would have speeded up the process. Oral pred doesn't get to high levels in synovial fluid - so it takes a long time to work.

[caterpillar in reply to PMRpro]

Thank you for your reply...

My Rheumatologist refused to diagnose me with PMR for over 2 years... left me with crippling pain, and insisted I was too young for PMR at 55... he put me on Methotrexate & Leflunomel, neither of them helped in any way, hence why I am seeing a private GP, as she is the only one, after seeing many doctors who agreed with the initial diagnosis of the GP I had seen 2 years previous (but wouldn’t prescribe meds, and passed me onto the Rheumatologist)

After several prescriptions for Pred, due to chest infections, and all my symptoms disappearing, it became obvious to me that I definitely had PMR... the only dose that worked with immediately no pain was 40mg...

I would like to be able to visit the doctor, in a couple of days, with a sensible plan for taking the preds, and looking at a sensible taper, as I am not sure she fully understands it, given that she told me 30mg for three days, dropping by 5mg every couple of days...

It is such a mine field for me, as I have not been lucky enough to get a rheumatologist or doctors who are willing to give a PMR diagnosis.. now I have found a doctor, and got on Pred, which has literally changed my life from being crippled with pain to freedom, I would like to manage it as sensibly as I am able....

[PMRpro Ambassador in reply to caterpillar]

Which bit of "over 50" forms the problem for these rheumies? And in fact, that is part of the criteria for including patients in studies - not saying that 50 is the bottom end of the age range for having it.

5mg at a time is a lot if you are a "50% person". You are in the UK? If they are coated tablets you have two choices, either asking for plain which you can cut or for smaller denominations of gastroresistant which come in 5, 2.5 and 1mg tablets (they must NOT be cut). 2.5mg g/r are common, 1mg less so:

medicines.org.uk/emc/produc...

What doses were you on and for how long in the past that triggered the PMR diagnosis?

And this is one tried and tested slow reduction plan:

healthunlocked.com/pmrgcauk...

Most people manage 2.5mg at a time at higher doses, a basic rule is 10% of the current dose but many don't manage even that in PMR. But you need a good 3-4 weeks if not more at the starting dose before even thinking of reducing. Do you have raised blood markers? They should have fallen to normal range and preferably as low as they are going to go and be stable. Then a small reduction - but spread it over a couple of weeks at least. Don't try to go from every day old dose to every day new dose overnight.

[Hidden in reply to PMRpro]

Pmrpro

Forgive my ignorance. I can understand it would be pointless getting coated pred then cutting, thereby negating the point of them. Is that the main point for not cutting them or is there a different, more substantial problem with cutting coated pills?

[PMRpro Ambassador in reply to Hidden]

Yes - cut them and you release the pred into the stomach not lower down the gut - so the risk of irritation is there, possibly magnified by the harsh edges of the cut tablet, they are very hard. Depends on the person but my husband really struggles to swallow cut tablets.

[Hidden in reply to PMRpro]

Thanks. I thought that must be the read On but always worth checking. I don't like smaller pills full stop. I am a bit blasè now as I tend to take a handful of pills 4 times a day but those little pred and Amitryptiline always get stuck in my throat.

[Soraya_PMR in reply to caterpillar]

So over those 2 years, what tests did these rheums run? What alternative diagnoses did they offer?

[caterpillar in reply to Soraya_PMR]

My Rheumatologist insisted I had inflammatory arthritis, and laughed every time I suggested PMR, he did ultrasound and insisted I needed surgery on both my shoulders & a new hip... my new private doc said that was ridiculous, I def have PMR, and I was to avoid surgery at all costs, as the ultrasound results pointed to inflammation from the disease, not mechanical....

[Soraya_PMR in reply to caterpillar]

Any raised inflammatory markers? (ESR/CRP)

[caterpillar in reply to Soraya_PMR]

I am unable to say, when I visited the Rheumatologist at first, he told me I had no inflammation, according to the bloods, but now, whenever he shows me my regular blood test results, he says the inflammation has gone down... he is very difficult to get a straight answer from, and I do try.. but he is often cracking jokes, or mildly making fun of me....

He is a peculiar type, or as my new doc called him ‘an oddball’...

I have learnt my bloods cannot be trusted, over the years, it took the doctors & hospitals over 4 months to discover that I had an inflamed & leaking appendix, which had collapsed half my bowel, because every test came back ok.. the only reason they found it, was the hospital decided to go in with exploratory surgery, (after a week of bloods, ultrasound, CMT, and others) to see why I was throwing up with pain...

I have a weird body....

[PMRpro Ambassador in reply to caterpillar]

I discovered recently that when I had a major flare about 6 years ago my ESR had risen to 18 - I had only ever been told it was "normal". My normal is 4 - so it was very elevated!!

Quite how a normal blood showing no inflammation can go down is difficult to accept...

[piglette in reply to caterpillar]

Dear Caterpillar, I always ask for a printout of my blood test results, so I can see what is happening. In fact now I can actually see them on line which is even better.

[Soraya_PMR]

Crikey! 40mg is high for PMR. I think it would have been kinder to you to have had a moderate dose over a longer period.

I’d lay odds on your returning pain being steroid withdrawal rather than returning PMR pain, as it’s hitting you day one. By how much are you trying to reduce?

[caterpillar in reply to Soraya_PMR]

By 5mg, as I have tiny tablets, which I would be unable to cut... I am going to ask the doc to prescribe the bigger uncoated ones next...

It is not a surprise to me to need a high dose, as it always happens with literally every medication I have needed in the last 30 years... even anaesthetics need to be doubled or tripled... I have a peculiar body, I think...

[piglette in reply to caterpillar]

Hi Caterpillar, you can get coated in 2.5mg and 1mg as well as 5mg. My rheumie just gave me 5mg and did not mention any others to me.

[caterpillar in reply to piglette]

Thanks, I will request the smaller ones...

[Rugger in reply to caterpillar]

Hi caterpillar,

If you want to stay on the 'tiny' white, uncoated tablets (1mg are smaller!) you can get a pill cutter from the pharmacy and you can cut the 5mg tablets into 2.5mg - sometimes you get a good half and a poor half and other times both are fine - but taken over 2 days the dose is equalised, even if one dose is 'crumbs'! The 2.5mg tablets available on prescription in the UK are all gastro-coated and take longer to get into your system, so you may, at this stage, want to use the uncoated tablets so that they act more quickly. As others have said, you don't cut the coated tablets.

If you want to go armed with details of taper regimes, have a look at the pinned post on the right of this page : Steroid Taper Web Application. That will show you just how many taper regimes there are and how SLOW they all are!

Let us know how you get on.

[Zebedee44 in reply to Rugger]

I get my prednisolone in 1mg, 2.5mg and 5mg in both uncoated and gastro resistant which makes it easier to juggle the tapering, and I split the dose and take the gastro resistant at bedtime for the slow release function and the uncoated in the morning with a little kefir.

It works for me, that's all I can say, and the doctors are happy to prescribe whatever I ask for. Bless them!

[Rugger in reply to Zebedee44]

Thanks for the info, Zebedee44,

I shall have to ask my GP and pharmacist for the 2.5mg uncoated tablets - they've not offered me any so far.

My GP was going to delete the 2.5mg coated from my repeats, until I stopped him and said I'd need them to make up the numbers as I taper lower at 0.5mg / month - he seemed in awe of how clued up I am about my doses.....! We have to be, don't we?!