told off (again).

[Hugh_Marc]

I was with my GP this afternoon for a medical & as it was the first one since my PMR diagnosis I was expecting a different conversation than previous ones (which were really box ticking exercises)

Anyhow the good news is that he doesn’t feel my PMR interferes with my ability to foster ( which is what the medical was for).

Then we discuss what dose I’m on & I say 14mg.

he declares that he’s shocked & I should be on half that 6 months in.

“You’ll have to kept in touch with us more so we can monitor this” he says ( I’m thinking isn’t it your job to keep in touch with me).

mum trying to explain that I’d dropped to 13mg after Christmas & the horrible fatigue had returned

You might just have to live with some of these symptoms was his response. I want you on 12mg by the end of February & 10 by the end of March. Then 1mg reduction every 4-6 weeks, so by the summer you should be on a maintenance dose of 4-5mg.

I assume this just doctor being doctor, rather than doctor hearing the patient.

[SnazzyD]

Well, if my calculations are right, even by the NICE guidelines to get to 7mg it could take 9 months. A more importantly they state that “smaller reductions and longer durations may be needed to avoid relapses in some people”. Those who are leading research in PMR favour a slower approach. This is from the NICE guideline and the clue is in the word, GUIDELINE.

cks.nice.org.uk/topics/poly...

NICE guidelines

[Hugh_Marc in reply to SnazzyD]

Thanks.

[Francesbarbara in reply to SnazzyD]

'Reduce the dose of prednisolone slowly when symptoms are fully controlled''

The words 'fully controlled' strike me as being the most important. How many patients are told to reduce when they are still in pain, just to satisfy the GP. Delighted to see these Guidelines. Thank you SnazzyD.

[Hugh_Marc in reply to Francesbarbara]

Yes. If anyone who knows me were reading this they’d laugh. I’m famously stubborn (as those who’ve had the misfortune to be my boss from time to time have discovered) 😆

[PMRpro Ambassador]

Cloud cuckoo land ... It took me 4 years to get consistently below 10mg.

[Hugh_Marc in reply to PMRpro]

I was quite shocked tbh. He’s normally supportive. I might have hit him on an off day.

He was talking about the knife edge between help & harm with steroids, which is fair enough.

However I don’t think it’s viable to go that fast. It hasn’t worked for me before

[SnazzyD in reply to Hugh_Marc]

He might be supportive, but lots of doctors do have a love hate relationship with Pred. They prescribe it as the current best medication for PMR/GCA but then fret about side effects and try to get people off it. Many people grace this forum with the same story of being rushed off Pred only to suffer from relapse. Those who really specialise in PMR don’t go for this approach and see the value in seeing each patient as an individual. There seems to be a lot of ignorance about mitigation of side effects like weight gain and diabetes.

[DorsetLady PMRGCAuk volunteer in reply to Hugh_Marc]

He was talking about the knife edge between help & harm with steroids, which is fair enough.

But what about quality of life?.. and if you are taking in extra responsibilities with fostering, you need to make sure you are on enough Pred, and to be honest what he wants may not correlate with what your PMR requires…

In my view, on this occasion he is wrong…

[Hugh_Marc in reply to DorsetLady]

Thanks. We’ve been fostering for 30 years & the young boy we currently have is exceptionally challenging

We need to do a medical & get re-approved every 3 years this is the first time I’ve ever done the medical with a health issue he honestly wasn’t concerned about my ability to continue to foster.

I think he’d not reviewed my case for a while - hence his reaction.

The biggest problem is the length of time to see a rheumatologist.

As my wife said when I got home, once I’m under the care of a rheumatologist the pressure over what medication I’m taking is off the GP’s shoulders.

[DorsetLady PMRGCAuk volunteer in reply to Hugh_Marc]

I applaud you and your wife for fostering-I’m sure it’s very demanding but also very rewarding. So just remember PMR doesn’t cope well with stress, no matter how times you’ve been around the block before it came to the party.

Good luck 😊

[Pixix in reply to Hugh_Marc]

Just for your info. In my case, my GP is great & understands PMR very well. I have been able to taper slowly etc. but when I was referred to a specialist for a different disease, not connect and with PMR, the subject of PMR came up. He was very very angry, & paced the room, & said I don’t care if you are sick again (adrenaline issues I’d had) you are to reduce from 5mg to zero within the next 8 weeks. I will see you again at that time. Here is a blood test form. Blood test when at zero will trigger next appointment. The whole experience was appalling (there was more shouting & pacing when he found I’d had PMR for 4 years)L I didn’t get the blood test, didn’t go back, & I’m currently on 1mg. Just a small warning, you will find other posts referring to ‘bad’ consultant meetings, I’m sorry to say.

[PMRpro Ambassador in reply to Hugh_Marc]

It isn't a "knife edge" - it is far broader than that. I was at a research meeting with one of the leading rheumatologists in the UK in the PMR world. There were a few GPs there too. And the thing that came out at the end of the half hour session yesterday seemed to me to be "enough pred" and "slower tapering" in terms of what is important to patients. They have to look at it in the round and it is no use dangling this carrot of pred, relief from symptoms and being able to have a decent QOL and then turn round and snatch it away again. The bottom line is that I don't WANT to live a few years longer if the years up to the end are so painful and disabling I can't have a half-decent life. Two of us at that meeting have been on pred for 14 years and more - neither of us are crumbling and both of us live well. Because of pred.

[Stills in reply to Hugh_Marc]

I don’t have PMR and not current my taking pred however between the ages of 17 -22 I was taking 15 mg per day for Stills Disease. No preventative measures prescribed and now nearly 63 and I can honestly reported no known side effects at all. Bain fog is a symptom of my condition and not a side effect of steroids taken over 40 years I’m sure.

[alangg]

I'm dismayed by the different approaches that GP's have to treating PMR. The GP that treated me (male, 59 when diagnosed) was happy to prescribe Pred according to my needs. She was even happier when I produced a tapering plan (based on DL's DSNS plan) as she wanted to keep it for future use.

The Rheumy dept said 'textbook case, responding to treatment, don't want to see him' and so I tapered over nearly 3 years from 15mg to zero with no apparent side effects and no flares with the GP's support all the way.

If I were you, I think I would go back and negotiate or find another GP.

[MiniSpec]

I don't know what your GP is talking about when he says there's a, "knife edge between help & harm with steroids". I've been on Pred since July 2010 (i.e. nearly 15 years) and so far I haven't found any harm from Pred other than mild tinnitus. I can live with that as I ignore it most of the time, so I think he's talking out of his a***.

Meanwhile, being on Pred has allowed me to live a relatively normal life, instead of the crippled heap who was in constant agony, and who could only walk with a walking stick, that I was before I was given it.

Just as PMRpro has said many times on here, the PMR is in charge, not you, not the doctor, but PMR, and only PMR. Trying to force you into pain and suffering through his ignorance is doing no-one any good.

So just ignore him, and if he tries to prevent you from getting the amount of Pred you need, then complain to the practice manager, pointing out the dire consequences of adrenal insufficiency, and if necessary find another doctor.

[Hugh_Marc in reply to MiniSpec]

I’m wondering this morning if it might be worth paying for a rheumatology appointment just to see what their view would be.

[Tappo in reply to Hugh_Marc]

I would! I have just booked one. £200 but (hopefully) money well spent 🙏 On recommendations from here I will be seeing Professor Rod Hughes in Chertsey.

[Hugh_Marc in reply to Tappo]

That’s interesting. I was wondering how much an initial consultation might be.

[PMRpro Ambassador in reply to Hugh_Marc]

Depends who you see - but Prof Rod Hughes in Chertsey talks a LOT of sense, and is always for a slow taper that fits YOUR PMR so you would be safe. He likes a first consultation f2f but afterwards video calls are an option.

[Pickets]

It was definitely worth it for me. A one off with a real expert who answered all my queries and anxieties in an unhurried and caring consultation! I came away optimistic and confident I’d get through it (when previously I was confused and really very down about how truly grim I was feeling..)

[Hugh_Marc in reply to Pickets]

Thanks. It’s always helpful to hear others experiences on here. Some days it can feel like you’re trying to sort this on your own.

I’ve honestly had more help here than from any medic so far. 👍

[Pickets in reply to Hugh_Marc]

Agree this is the most informative help ever! The forum provides human responses to our lived experience of a minefield and is priceless for that!

Good luck ! I hope you get some clarity and feel you’re getting through the ‘fog’ soon!

[Pr0jection]

While you might not agree with your GP's opinion, he's a lot better than mine who says to drop from 7.5mg to 5mg in one go. He doesn't understand, or want to understand, about tapering. He says that my PMR is gone, because the text books say that it's over in 2 years. However, I'm trying to sweet talk him into being reasonable. It's hard!!!! Wish you well on your journey......

[PMRpro Ambassador in reply to Pr0jection]

"He says that my PMR is gone, because the text books say that it's over in 2 years"

Refer him to Prof Sarah Mackie's Mythbusting series in the PMRGCAuk Newswire and on RheumNow.

pmrgca.org.uk/pmr-myth-bust...

rheumnow.com/user/27983

[Pr0jection in reply to PMRpro]

I'll read it with pleasure, but Dr A is not a man who has an open mind, as he really believes he knows it all. Harsh judgement, perhaps, but true. With only 2 rheumatologists in my area, and the alternative has misdiagnosed me in the past, I'm managing to manage, if you get my drift, with the helpful advice here.

[PMRpro Ambassador in reply to Pr0jection]

Oh I get your drift - it is a campaign message she and I are keen to see spread!!!! It just isn't acceptable that such arrogant doctors mess up their patients lives.