My rheumy wants me off of prednisone as soon as possible

[Morningdew62]

First of all, thanks to everyone who replied me, and gave me valuable advice on my previous post.

This is an update. Previously, I mentioned that I wasn't happy with my first rheumy appointment as she thinks I don’t need steroids because my inflammation markers are in a normal range and this is not a PMR and my pain might be controlled by painkillers. I told my GP about this and I got a new rheumy referral for a second opinion. Unfortunately, the waiting time is approximately 32 weeks at the Royal Free hospital. So I didn't have a choice but to meet the same rheumy doctor again. My Desca scan returned with severe osteoporosis, the results are much worse than were in April 2020. The rheumy said that my bones density is like 90 years old person. The rheumy categorically insisted on going slowly to zero steroids. She said in 4 months I have to be completely off of steroids. I asked her how I'm going to live with a severe pain, she replied that it can be managed with painkillers. She also insists on to take Zoledronic acid an intravenous infusion treatment. I understand that steroids affect my bones badly. But how to manage my PMR then? I'm on 5mg at the moment and I’m feeling the pain so what is going to be if I reduce my steroids dose even more... I'm so confused. I will appreciate your advice.

[DorsetLady PMRGCAuk volunteer]

Morning -

So sorry to hear this -that’s bad service from Rheumy. as we know on here not everybody has raised markers with PMR -particularly when on steroids. I understand her concern regarding your osteoporosis but she should be offering more than just painkillers.

I think we mentioned in previous post a private appointment with a recommended Rheumy. I’m sure there must be plenty within travelling distance. Is that an option for you - there will be members who can suggest a name.

[PMRpro Ambassador in reply to DorsetLady]

Plus the point that if your PMR is controlled - you SHOULDN'T have raised markers!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Quite 😊

[Suffererc in reply to PMRpro]

is there no end to professional bad advice. Do they not care the stres they put peeps too. My GP think I have not got PMR because it has gone on for 4.5years. Am to tell her from now on when I have a flare (if).

[PMRpro Ambassador in reply to Suffererc]

It is their education - and then they don't keep up with developments. They were taught it is a mild, benign, self-limiting disorder that only happens to the elderly (who probably aren't working any more). Recent research shows it can be as disabling as RA, can lead to other problems when badly managed and while usually self-limiting, it isn't always gone as quickly as they think and is not simple but a very heterogeneous disorder. All of which means more work for them - and we have seen their response to that since Covid. What makes me angry is the speedy "oh dear, what can we do" in response to Long Covid. Which is no more nor less than an autoimmune syndrome - just like PMR. Which has been around for very long time and ignored.

[PMRpro Ambassador]

Apart from anything else - has she considered the adrenal function side of tapering from 5mg to zero so quickly? I have my doubts! She thinks it is slowly - but it may not be slow enough.

Take the infusion - nothing wrong with bisphosphonates when you need them and it will improve your bone density. What are your t-scores?

You are in London - can you afford at least one private consultation with someone like Rod Hughes in Chertsey? The first consultation is usually £200-250, follow-up appointments are less.

topdoctors.co.uk/doctor/rod...

circlehealthgroup.co.uk/con...

As far as I know he still works at St Peters alongside his private work - and will sometimes add patients to his NHS list if possible. He specialises in osteoporosis too as well as being an excellent PMR specialist.

[Morningdew62 in reply to PMRpro]

I appreciate your comment. Thank you very much. I talk to my husband yesterday we decided to go private for a second opinion. My husband was crying - bless him. I said to him it will be okay and we will go through all this.

My rheumy didn't show me the exact Dexa scan results. She said the report will be sent later to me but I noticed the red number on the screen, I think it was -5.2. I'm considering making an appointment with Dr Huw Beynon in private. He also works at the Royal Free hospital.

[PMRpro Ambassador in reply to Morningdew62]

Is he good at PMR though? We know Rod is. I would ask on the forum if anyone sees Beynon and for their experiences.

[Morningdew62 in reply to PMRpro]

I don't know much about Dr Huw Beynon. But he has been recommended by Marychristabel

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Morningdew62]

Fair enough. But if he works alongside your current rheumy he may be reticent in disagreeing with her. Second opinions are usually better from someone who works in a different Trust, even if you see them privately.

[Morningdew62 in reply to PMRpro]

Thank you for a good tip not to be involved with a doctor from the same Trust. My rheumy and Dr Beynon work in different hospitals but under the same Trust roof.

[Morningdew62 in reply to PMRpro]

As far as I know my rheumy didn't arrange any tests for me except this one after I will be on zero preds.

Blood test request

[piglette]

I was wondering what does your GP think about all this? Do they think you have PMR or are they led by the rheumy?

[Morningdew62 in reply to piglette]

I haven’t seen my GP since he referred me to rheumatology. At my last appointment the GP said that in his 20 years of practice if inflammation markers are normal it is not PMR .

[piglette in reply to Morningdew62]

It looks like your GP does not know much about PMR and steroids either!

[PMRpro Ambassador in reply to Morningdew62]

Dear dear - knows more than the real experts does he? I always feel a degree of mistrust when a GP disagrees with a large proportion of the research community in a field.

Though to be fair, my markers were never "out of normal range" - but they were very raised for me. My normal ESR is low single figures and my ESR trundled along at 16-18 during a really bad flare. Some people just don't mount the acute response - noone knows why but it happens. And anyway - PMR isn't the disease, it is a syndrome, a set of symptoms that can be due to a range of underlying conditions, ranging from cancer down. So why shouldn't some of us have a form that doesn't raise the inflammation markers they look at (my ferritin was raised, also an acute phase response, but they rarely look at that)? Or that lasts a lot longer than some others.

[Floridafan in reply to Morningdew62]

Very recently someone posted a very good video from a rheumatologist telling us all about PMR and one of the things mentioned was that not everyone has raised markers. Perhaps you could give your GP the link, then they would be more informed for future reference.

Found it, try this link: youtu.be/QsHIle6u0BY(Not working as expected?)

[Bothan in reply to Floridafan]

Thank you for that video link...if only all our Rheumys were like her!!!

[Morningdew62 in reply to Floridafan]

Thank you for the link - much appreciated. I suspect that some doctors who once qualified, no longer look into updating their knowledge. I told my rheumy that up to 10% of people with PMR don't have inflammation markers raised. She replied - no, just up to 3%. I said but there is the possibility that I'm in this 3% but she didn't reply to my comment.

[PMRpro Ambassador in reply to Morningdew62]

You looked at one paper, she looked at another - and there are a load inbetween!! Doesn't alter the fact that there are quite a few of us around whatever the overall figure turns out to be!

[jinasc]

Not so sure about that - the first sentence she has written is: "

"Polymyalgia Rheumatica, or PMR, is common after the age of 65. "

Well over 5 years ago new Diagnosis and Guidelines were introduced with the age range down to 50 - how do I know, 2 members of PMRGCAuk were Patient Representatives on the Medical Committee . Those two people worked hard and produced statistics which showed the age range from there and others experience. People who took part in those statistic collection were all from another forum.

[PMRpro Ambassador in reply to jinasc]

To be fair - she says COMMON after 65. Which it is - and a bit less common in the 50s.

[jinasc in reply to PMRpro]

Trouble is I would rather she had put in the wording of the guidelines. OK I am feeling grumpy - stood on a piece of broken glass and my foot is hurting like the Devil from Hell HQ.

[Blackcat1M in reply to jinasc]

Ouch bet that is hurting please take care

[Hidden]

 I so sympathise with you, at my last Rhuemy appointment, I was told I couldn't possibly have pmr after 4 years and to come off pred ASAP, I was on 2mlgs a day. Also not to take naproxin anymore as it is bad for the heart etc. I asked what is wrong with me then, she said rheumatism, I said what all over? She didn't answer. Iike you without these two props I can hardly move. I have increased the steroids to 5mlg a day but currently feeling very ill.

[PMRpro Ambassador in reply to Hidden]

What was more to the point is - why did she allow Naproxen alongside pred anyway?

A couple of years ago it was all Naproxen is fine, less gastroirritant (less isn't not) but they learnt different and are now panicking - so why can't they learn different for PMR too??

[Hidden in reply to PMRpro]

i was put on naproxin last October as my left ankle is painful, I asked at the time if it was OK and the gp said yes. I am wondering now if to continue tapering prednisolone but also keep taking 2 naproxin a day which seems to help the aches and pains more.

[PMRpro Ambassador in reply to Hidden]

What is the maximum daily dose for the Naproxen? Do you take any stomach protection medication? Is that October 2021? t is longterm use like that that is most likely to cause a problem - have you tried any other painkillers such as paracetamol or tramadol?

[Hidden in reply to PMRpro]

yes, october last year . I take omeprazale first thing then naproxin at 10am and another at 10 pm. I find that paracetamol doesn't touch it but I have some tramadol, is that better than naproxin?

[PMRpro Ambassador in reply to Hidden]

It doesn't have the gastric irritation downsides of NSAIDs - just other downsides, Not sure about the cardiovascular and renal adverse effects compared to those of Naproxen - but chronic use of practically any pain killer can have cardiac effects.

[Hidden in reply to PMRpro]

oh bugger

[PMRpro Ambassador in reply to Hidden]

Discuss it with your GP - optimism makes me suggest a pain clinic referral! How much naproxen are you taking? Not tablets - number of milligrams!

[Hidden in reply to PMRpro]

250 mils per tab. I spoke to my GP who was not happy with with me taking naproxin but when I said it was the only way I could fu nction she said at the end of the day it was my call.

[PMRpro Ambassador in reply to Hidden]

At that dose you probably aren't too bad off, it is quite low. Can you function better at a slightly higher dose of pred?

[Hidden in reply to PMRpro]

i have increased pred to 5mgs this is day 3, no naproxin. Feeling as if I'm back to square one regarding sympton though will persevere for a few more days.

[HeronNS in reply to Hidden]

I just spent a few minutes trying to figure out what is meant these days by "rheumatism". Most commonly rheumatoid arthritis. Is that what your doctor meant? I wouldn't have thought that taking you off all meds was quite the appropriate response to such a diagnosis. If it was more a dismissive comment implying that one has to expect this sort of thing when aging, I believe it's more generally recognised now that pain in the elderly is not normal and should be treated (not necessarily through medicines, depending on the particular condition).

What dose of pred were you on when you last felt your symptoms were properly controlled? And if naproxen is helping more, then either your pred dose is far too low to have a useful effect, or it probably isn't PMR as I think most people would agree NSAIDs of any kind only, at best, take the edge of PMR. Given a choice, having had experience of using naproxen although not for PMR, I'd opt for longterm treatment with low dose pred over any daily NSAID.

[Hidden in reply to HeronNS]

sorry osteoarthritis, I asked about having a test for RA but apparently it's not conclusive and my knuckles don't show evidence anyway. Itm knees and ankle so painful and the usual pmr along my shoulders down my arms.

[PMRpro Ambassador in reply to Hidden]

Rheumatoid factor isn't anything like conclusive but the anti-CCP test is pretty good if it is positive, less so if it turns out negative:

creakyjoints.org/diagnosis/....

[HeronNS in reply to Hidden]

You know, I have osteoarthritis. I've had it for decades. In my experience PMR pain is very different. OA hurts certain joints for a time when it is flaring, and then it doesn't hurt, although there can be stiffness and discomfort with movement. Lately I get a lot of referred pain from my arthritic spine, but even that is very localized, not the all-over pain of un- or undertreated PMR. There's nothing to stop us having more than one condition. I think a fair number of people have both PMR and OA, judging from posts here and in the OA communities.

NSAIDs taken on a regular basis for OA interfere with cartilage renewal and end up being more damaging than the minor pain relief they provide is worth. That's just my opinion. I have x-ray proven arthritis in my hands, feet, spine (especially neck or cervical spine) and knees. I do not take painkillers for any of these problem areas, but I do have a sheaf of physio exercises! On the other hand there is no way I could function without pred for PMR.

[Hildalew]

Oh dear, Morningdew, I am so sorry you have had such bad advice and medics who seem to have been reading some unhelpful sources. (If they're doing any reading at all!)

Am I right in understanding that nobody has mentioned taking calcium supplements or eating calcium-rich foods? I can't make any claims about the good that that can do because I am not qualified - I just know that from day 1 (almost 4 years ago) the most frequent advice I drew from this forum was - a) 'don't try to rush Prednisolone, it's not a race' and b) 'make sure you get enough calcium - from supplements and foodstuff' and but research the supplements because the rate of absorption of calcium seems to vary according to the way the supplement has been produced ..........

I do hope you get to see a properly experienced rheumy very soon.