First time Rheumatologist, not happy: Hi everyone... - PMRGCAuk

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First time Rheumatologist, not happy

kate1978
kate1978

Hi everyone, had PMR for 5 and a half years, started on 15mg of pred and had got down to 3 mg, then had my first flare last November and had to go back to starting dose, this time it was in neck, shoulders and hips as usual, but also in my wrists, mentioned it to my GP and she said it might be RA and made appointment for him to check it out

Went to see him this morning, the first thing he said was (why are you still on steroids? They will kill you! )

Apparently there is a danger of heart attacks and strokes and broken bones!

I told him that I had finished taking Alendronic Acid after 5 years, he said he wants me back on it!

I tried to tell him about this group, but he wasn't listening, he just said I shouldn't google things!

In his opinion I should be off steroids within 4 months and just use paracetamol or ibuprofen

Altogether not happy

87 Replies
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PMRpro
PMRproAmbassador

Nor would I be - the flare was almost certainly you overshot the dose you needed and had you just gone up 5mg you would have been fine.

As for the rheumy - time to abandon anyone with such poor patient skills and report him. He's grossly overegging the pudding.

If there is anything you should be stopping after 5 years it is alendronic acid. Current recommendations are that you should not take it for more than 3 years before having a holiday from it.

Where in the UK are you?

kate1978
kate1978 in reply to PMRpro

I'm in Cheshire, everything he said contradicts everything I've learned

PMRpro
PMRproAmbassador in reply to kate1978

There seem to be some strange rheumies in the Manchester area.

Is private an option? What has your GP said about this? Have you spoken to her yet?

Has the higher dose of pred helped and what dose are you on now?

kate1978
kate1978 in reply to PMRpro

Yes I'm on 12.5 now and feel fine, but when I went to 5 or 10 I was no better. Will try dropping to 10 next week, I always thought it was better to take pred than take pain killers

PMRpro
PMRproAmbassador in reply to kate1978

I agree about painkillers! A friend was in hospital with a gastric bleed after 3 doses of ibuprofen for her pMR pain - not that it did any good!

kate1978
kate1978 in reply to PMRpro

Haven't spoken to my GP yet

PMRpro
PMRproAmbassador in reply to kate1978

Since this isn't an emergency there isn't any hurry for a week or two at least.

In depth discussion with the GP and go somewhere else. In the meantime someone on the forum may be able to recommend someone who isn't so obnoxious.

Oxford8
Oxford8 in reply to PMRpro

After waiting for months for NHS rheumy appointment, I went privately to Preeti Shah at Wilmslow Hospital in Cheshire. She was brilliant. I paid £250 for the appointment. She sorted out the difference between what was PMR pain and what was sciatica. Consequence of that was that I could fairly swiftly lower my Pred dose from 20mg to 15. Now 8.5. She gave me an injection for the Sciatic pain. When she realised I was self - funding, she transferred me to her NHS clinic at Altrincham, Cheshire. She arranged Dexa Scan, (good result so no AA - only adcal), X-Rays and MRI scan of lumbar spine - on the NHS.

I saw her again recently in her NHS clinic and she was every bit as helpful as she, was in Wilmslow.

I found her on line in a search 'Rheumatologists in or near Altrincham'.

I agree ,Hi Kate I am in Cheshire too !

kate1978
kate1978 in reply to PMRpro

I told him I had a fairly recent dexa scan and my bones are fine, I still take calceos, there is no way I'm going to go back to AA

Pongo13
Pongo13 in reply to PMRpro

I asked my dr about aa recently and she said I had to be on it five yeArs - then I get a ‘drug holidAy’ as she put it. Is there something I can quote next time to gently point her to new thinking without peeing her off!!!!?

HeronNS
HeronNS in reply to Pongo13

Near the end, a section on discontinuing bisphosphonates:

ncbi.nlm.nih.gov/pmc/articl...

I'm sure we can find more!

kate1978
kate1978 in reply to HeronNS

Thank you , interesting article, pity he didn't read it !

HeronNS
HeronNS in reply to kate1978

Well in fairness most of the literature is advocating use up to ten years, and even this article seems a bit equivocal. But I think as the evidence mounts commonsense should eventually prevail. It stands to reason if old cells are no longer being removed the bone is almost certainly going to become more brittle, and the evidence cited that the risk of further fractures increases alarmingly with continuation of bisphosphonates after an initial "atypical" fracture should be enough to give pause.

PMRpro
PMRproAmbassador in reply to Pongo13

This is the original work from Imperial

ncbi.nlm.nih.gov/pmc/articl...

It is a preliminary opinion but it is enough to make me think even harder about their use until more and proper evaluation has been done.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Oh dear..what a disaster.

Steroids in themselves are highly unlikely to kill you - they may give some unpleasant side effects, but what a scaremonger!

If you’ve been on AA for 5 years or more, then you need a break from it!

Either new rheumy required or stick with GP.

Hidden
Hidden

Oh My Goodness, l wonder if he was a Locum that l came across several years ago - send me a PM with his name!

The first words out of his mouth were ‘Well, you’re going to die, simply going to die if you don’t stop the steroids & why are you on Methotrexate?.........

We were rendered speechless as l had just been treated for Cancer & l thought he was reading a pathology report!

I made a Complaint directly to my Consultant! And, apparently that was the last Clinic he held, as l wasn’t the first to complain but l was well know by the Team & not inclined to complain!.......

kate1978
kate1978 in reply to Hidden

He said his name so quickly I didn't catch it. He was Asian looking and so rude, it was at Leighton hospital in Crewe

PMRpro
PMRproAmbassador in reply to kate1978

I have a friend from the London area who met a similarly minded Asian rheumy. Complaint time.

Hidden
Hidden in reply to kate1978

Different Chap! Rude Whatever!

Soraya_PMR
Soraya_PMR in reply to Hidden

OMG MrsN!!! That’s appalling! I can feel a hot sweat and bounding heart on your behalf 😮 What a simply dreadful, unempathetic, cruel thing to say.

Hidden
Hidden in reply to Soraya_PMR

It was just awful, it felt almost dreamlike, but l got straight on to the Rheumy Team & the hospital where l was seen, apparently l wasn’t the first person he’d spoken to like that but l was very probably one of the last!......

Soraya_PMR
Soraya_PMR in reply to Hidden

Well you knew better, but what about those poor souls who think consultants are God?

Hidden
Hidden in reply to Soraya_PMR

That’s why l rang straight away, l spoke to the Team to see who he was, ie a New Consultant but no a Locum covering a couple of clinics, my Consultant rang me back to check out everything & l believe all Clinic Letters were checked because he told me stop Methotrexate & reduce by 1mg every 2weeks to Zero! As If?..........

Soraya_PMR
Soraya_PMR in reply to Hidden

😮 that might have killed you! 🙄

Hidden
Hidden in reply to Soraya_PMR

Exactly! When l rang up l said l wasn’t just ringing for me but for all the other patients who do exactly as they are told!....

Soraya_PMR
Soraya_PMR in reply to Hidden

Well done you!

Unless he’s going to give you a definitive alternative diagnosis, then getting you off pred and onto paracetamol and the horrors of NSAID’s ......and MORE AA, geez!!!!

Yes you MAY have RA, but some investigations and not castigation are called for.

It’s the sort of stress that’ll cause you a flare, honestly, some doctors! I despair.

PMRpro
PMRproAmbassador

As I just said to my husband - I'm doomed ... Heading for 10 years on pred. Maybe I'm dead and just a figment of your imaginations ...

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Always said you were an angel! 😇

Soraya_PMR
Soraya_PMR in reply to PMRpro

Did you say it in a Scottish accent like John Laurie?

PMRpro
PMRproAmbassador in reply to Soraya_PMR

Obviously!!!!! You silly lady ... ;)

Soraya_PMR
Soraya_PMR in reply to PMRpro

“Stupid boy” 😉

PMRpro
PMRproAmbassador in reply to Soraya_PMR

They don't like it up 'em you know!

Soraya_PMR
Soraya_PMR in reply to PMRpro

Loved the programme as a kid, love it even more now. So many things I didn’t understand as a youngster, it was really quite close to the mark for it's time.

PMRpro
PMRproAmbassador in reply to Soraya_PMR

My father must have seen the first series, maybe the second, before he died at 49. He loved it - said it was the Home Guard to a T!!! And he was in it as he was a farmworker so a protected occupation. And blind as a bat ...

Longtimer
Longtimer in reply to Soraya_PMR

That's what I was thinking......brilliant actor!

HeronNS
HeronNS in reply to PMRpro

Well on the bright side we are all going to die of something someday. 🤣😁😆😉😂

PMRpro
PMRproAmbassador in reply to HeronNS

As a close friend once said - Just some of us will die healthier than others ...

Soraya_PMR
Soraya_PMR in reply to HeronNS

That’s what I say.....we’re none of us getting out alive!

I love the way everyone rallies! He’s a nutcase Kate, run a mile!

Did either doctor order a blood test for the usual RA factors? In particular the anti-CCP test? ard.bmj.com/content/67/6/903

kate1978
kate1978 in reply to Mahnahvu

No he said there was no point while I'm still on steroids!

Soraya_PMR
Soraya_PMR in reply to kate1978

Surely that blood test has been checked at least once in your 5.5 years?

Oh I'm seething for you! (I've been there). Please find a different rheumy. As if any of us would choose to be on these meds! They need a good dose of PMR pain and all that comes with it. See how smart they are!! Best wishes.

kate1978
kate1978 in reply to powerwalk

Well I certainly don't want to see him again

Endo I saw last year told me if my adrenals don't come back on line it was no problem to stay on 5 mg for ever. Not that I want to. But it stopped me worrying. Seeing Endo again soon.

To be fair we'd all like to be off them. I think more understanding about the final phase. I have got down to 2mg 4 or 5 times but it always flares when I try to get down to 1mg. Then I go up to 5mg or 6mg and it takes months to get back down again. I have consistently tried to get off them, and consistently failed. Any tips?

If you’re dropping from 2mg to 1mg, there’s your problem, you’re trying a 50% drop! No more than 10% drop is the adage.

Try 1.75 (a 0.25mg drop) which is a squeak over the 10%.

Going up to 5 or 6 to catch the flare is quite sensible, but you might be able to drop back to 2mg again fairly swiftly i.e. within the week???

Thanks, so what lower doses do the tablets come in? The lowest I have is ones...

HeronNS
HeronNS in reply to Daisy-Roots

This is where you get a pill cutter and make your own! And if you aren't already, use one of the slow taper methods patients like us have developed. I think most of us are able to manage with cutting a 1 mg tablet in half and creating a .5 pill and introducing the lower dose slowly, rather than overnight, is also very helpful.

I’ll take a photo of my pill cutter for you.

I cut up my 1mg. tablets with a kitchen knife - they do tend to shatter, but I keep the little bits in a small plastic pot, and select bits! I am currently on 3mg. and a quarter.

Best wishes.

NB cut PLAIN pred only. If you’re on coated, get some plain prescribed.

I use ice packs instead of painkillers as make me feel

sick - so sorry to hear you have been poorly for so long

Just reading the interesting articles and agree that some Rheumy's don't have a great knowledge of PMR. Luckily mine is open minded. Things I would like to know, and wonder if there are any stats are the number of years taking pred, will take off your life span, and is it automatic that you will develop osteoarth by taking pred. Actually my rheumy gave me a synacthen test which showed I was clear and to stop taking Pred. Great for a few days then Bingo, back with a vengeance. More blood tests next week.

Soraya_PMR
Soraya_PMR in reply to KCRoyals

What dose were you at when you just stopped pred?

Will you develop osteoarthritis whilst on pred???? That’s a new one on me! One of the best ways of avoiding OA is to maintain blood supply to the joints, which is why exercise is good. The positive/negative pressures from walking for instance causes synovial fluid to bathe your joints, providing nutrients and removing waste. Lack of movement & poor blood supply will hinder a joint, and both would happen in PMR without pred.

I don’t think pred shortens your life either. Without pred you may succumb to stroke, cardiovascular event, loss of sight. Quality v quantity!

Soraya_PMR
Soraya_PMR in reply to KCRoyals

“Actually my rheumy gave me a synacthen test which showed I was clear”

Clear of what?

PMRpro
PMRproAmbassador in reply to KCRoyals

The synacthen test has NOTHING to do with PMR - all it can show is that your adrenal function is in a position to take up the reigns, not whether it will but that's another matter. You still need to reduce the pred dose slowly, you must not stop it suddenly.

But just because you are on a low dose of pred and the ESR/CRP blood markers look OK and a synacthen test shows normal function - that does NOT mean the underlying cause of the symptoms we call PMR is gone. It means you are on enough pred to manage the inflammation. Nothing else.

PMR has been found to not affect life expectancy - and since most of those patients will have been treated with pred I imagine that means it is unimportant. GCA could/would shorten life expectancy without treatment, leading to an increased risk of stroke and other cardiovascular events and peripheral vascular disease. Pred mitigates that.

Pred does have adverse effects - most can be minimised or avoided when you know how and are reasonably disciplined. After all, there are many drugs where you must not do certain things: methotrexate and alcohol don't mix well, statins (and many other drugs) and grapefruit must not be mixed, etc etc. So avoiding certain habits shouldn't be too onerous. The OA thing is claimed to be due to pred affecting the cartilage lining of the joints. But that can happen even without pred. I was told by a rheumy I had OA when it was in fact PMR causing the pain. 14 years later, after over 8 years on pred I had a bit of knee pain and was sent for an x-ray: no sign of OA at all. Over 7 years of pred had also not made a significant difference to my bone density and I have only taken calcium and vit D. I am no longer Cushingoid - I was, I lost 35lbs in weight on low carb eating and also changed to a different corticosteroid and all the extra fat in the usual places went. I have no sign of pred-induced diabetes - but I do eat low carb to avoid that risk.

Doctors sometimes make it up as they go along because they think we are not clever enough to check their claims that the only drug that works for us is dangerous and we should not take it or stop taking it. I don't really care a lot if pred shortens my life by a few years - because without it I can't live now without pain and disability and a/f that would confine me to the house and probably stop me driving. I had that for a few months - and believe me, it wasn't nice!! I'd had 5 years of no pred - that was almost as bad despite having use of the car.

Sounds like he needs to go back to the classroom - and not to teach!

Hi

A best friend of mine has taken steroids for over 40 years, large doses at beginning and smaller doses now (2mg) for MG. I believe she was on over 100mg for a long long time and she is now in her 70's having been told she would not live over 30 yrs. She is fine, she does have a lot of other medical problems (not down to steroids) but really is an advocate for steroids if needed. She often says Doctors do not know how they work and are frightened of them! ATB Angie xx

kate1978
kate1978 in reply to saffron52

What is MG ?

PMRpro
PMRproAmbassador in reply to kate1978

Probably myasthenia gravis - a chronic autoimmune neuromuscular disease that causes weakness in the skeletal muscles,

kate1978
kate1978 in reply to PMRpro

Thanks

kate1978
kate1978 in reply to saffron52

I wonder what my Rheumatologist would say to her !

PMRpro
PMRproAmbassador

Have you seen the reply from Oxford8 recommending a rheumy in your area?

KCRoyals
KCRoyals in reply to PMRpro

No but I'll check it out thanks.

kate1978
kate1978 in reply to PMRpro

Yes I'm not going back to him again

So many great replies, if it wasn't for this forum so many people would feel really lonely with this condition.

Thx

Doctors should not rely so much on numbers. They NEED TO LISTEN TO THEIR PATIENTS!

Hear hear!

Medical mafia no relief in sight for ignorance

run run as fast as you can. HE is a nightmare and he is wrong. Can you just go back to your GP who seems to have understood your situation. No more AA and I am so sorry you had to go back up. where are you now.. what dosage? My advice (as shoddy as it might be) is to continue with your prednisone.. tapering... take Calcium, D3, M7K2, magnesium and do some weight bearing exercise for your bones. Eat as well as you can. do as much as you can and listen to PMRpro and Dorset Lady!!!

Thanks for all your replies and advice I'm on 12.5 will try to drop to 10 next week, I take the chewable calceos . Do you think I should take magnesium?

HeronNS
HeronNS in reply to kate1978

Yes, magnesium, especially if you are already taking extra calcium, is a good idea. Take magnesium at a different time (not with pred either) unless it is already included in your calcium supplement in which case it is probably properly balanced. You can also get lots of magnesium from green plants, magnesium being to plants what iron is to animals, and through Epsom salts baths or foot baths. With oral calcium supplements a little goes a long way! Good book - The Magnesium Miracle by Carolyn Dean.

kate1978
kate1978 in reply to HeronNS

Thanks for the advice, I can't have a bath or a shower for a while, I was borrowing a friends electric scarifier, he just said he wasn't in but to take it out of the shed, went round, took his lawn mower out, the scarifier was behind it, a rat jumped out, I was so startled, I screamed and stumbled back on to the mower, took all the skin off my shins! Went to minor injuries at the hospital, waited for over 2 hours, it looks like raw meat! They dressed it and told me told me to keep it dry, so missing my bubble baths, not the same just washing.....

my cure all for everything nice hot bath and some chocolate ! Been back twice to the nurse at my health centre to have them dressed, look like Nora Batty... but still got my chocolate, I need to put some weight on I'm only 8 Stone 4 lbs

Seems like you will waste your time with this Rheumy. It looks like a change is necessary!

kate1978
kate1978 in reply to Jackoh

I didn't want to see a Rheumatologist anyway it's because I had pain in my wrists and GP thought it might be a good idea to check for RA. My wrists are fine now.its always been neck shoulders arms and hips but the wrists we're new symptom

So it just seems better then to stick with GP if you’re happy. I don’t know about others but you questioned taking magnesium. I do take it .

Sounds like the Rheumy appointment I had a few weeks ago. He wanted me to go onto Methotrexate and Ibuprofen, take Omeprazole and come off Pred. as he said my adrenals won't work again if I stay on it. I asked to think it over until my next appointment at the end of May. I'm reducing to 3 mg. at present with no ill effects so far. I would think my adrenals should be working by now at this low level of Pred., shouldn't they?

PMRpro
PMRproAmbassador in reply to Joan-E-D

Not necessarily - they take up to a year after coming off pred altogether to settle down completely. But what he thinks he can achieve with methotrexate and ibuprofen at this stage is beyond me! mtx doesn't work on its own, ibuprofen usually does next to nothing in PMR, and the most likely effect of stopping pred at 3mg is a flare! mtx should be used to help people who struggle to reduce to single figures - you are WAY beyond that stage.

I'd be asking for a serious discussion with my GP to see if they will continue from here on. That is a very low pred dose and nothing at all to be worried about.

Joan-E-D
Joan-E-D in reply to PMRpro

Thanks for this information. I didn't realised that adrenals could take so long to settle.

I would have thought to stay as you are, I can't see the harm in such a small dose

First I am in Spain. I was in terrible terrible pain with no hospital appointment so went to see a rheumatologist privately and he was brilliant. Put me on prednisone 10mg then upped to 15mg. My protein levels were through the roof. The relief was amazing. Anyway my hospital appointment came through and I saw a Consultant for internal medicine who was angry that I had gone privately. He didn’t believe in steroids and said I had to come off them and take paracetamol. I was near to tears. I will not be going back and will pay to go private.

PMRpro
PMRproAmbassador in reply to GlynisE

How unprofessional! He may not believe in pred - but in that case, he can't believe in PMR and GCA either can he? I have heard such variable reports from Spain in the realm of PMR/GCA - the medics seem poor and yet there are some excellent research groups.

GlynisE
GlynisE in reply to PMRpro

He was very aggressive too. As if paracetamol can control the pain. He didn’t even look at the blood tests.

PMRpro
PMRproAmbassador in reply to GlynisE

Of course an inexperienced physician who is not rheumy trained is not ideal. It is only recently that we have a real rheumatology department here in my region in northern Italy - before it was shared amongst physicians and the rehab people who are often rheumy trained. And the further south you go in Europe - the less common it becomes.

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