Is 30mg of Pred a bit high for a trial? - PMRGCAuk

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Is 30mg of Pred a bit high for a trial?

Ebn49
Ebn49

I'm on day 3 of a trial of Pred, the GP is still reluctant to give me a diagnosis of PMR, mainly because she says she's never seen anyone as young as me with PMR (58), plus the blood tests came back negative. However, my brother had it aged 60 (has just finished taking Pred after 2 years), and I gather there may be a genetic factor in getting it. He tells me he started on 15mg, but I've been told to take 30mg for this 5 day trial. I've seen an amazing difference in just 3 days and already feel as if I'm getting my life back, which is fantastic, although I haven't had the diagnosis yet. I suppose my main question is, does 30mg seem a bit high? Will it mean it will take longer to taper off? Has anyone else here had a similar start? Thanks!

46 Replies
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Hidden
HiddenAmbassador

Hi ebn49, that is a high dose for PMR it's usually recommended 15mg to 20, with 25mg as high dose. Your gp is very behind the times. The condition is considered to be from 50 yes and I found a NICE document yesterday revised in Feb 2019 that had 40yrs upwards.

cks.nice.org.uk/polymyalgia...

Ebn49
Ebn49 in reply to Hidden

Thanks Poopadoop, that's sort of what I'm thinking having read around the forum a lot these last few days. I suppose I don't want to appear to be telling the doc her business (she's been very nice, and I haven't actually met her, we've only had phone appointments so far). But good to know. I guess GPs can't be experts on everything. Hopefully I'll get to see a specialist who's more up on it.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

I guess your doctor is trying to find out what effect the 30mg has - at the end of the 5 days trial you can safely stop it altogether or drop down to 15mg (if PMR diagnosed) and then taper as normal.

It is safe to take a dose of Pred for 2 to 3 weeks before your adrenal glands stop working - it prescribed for other illnesses on a short sharp basis.

Incidentally, 58 is NOT too young. Just because she hasn’t seen anyone that young, doesn’t mean it is true!

Good luck, and let us know how you get on.

Ebn49
Ebn49 in reply to DorsetLady

Hi Dorsetlady, thank you for that, I'm probably panicking for no reason then! The adrenal glands stop working?? That sounds a bit serious. Oh dear, I have some more research to do to understand this thing.

Onwards!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Ebn49

If you’ve been on Pred at a dose higher than 7.5mg-10mg for more than 3 weeks, your adrenals go into rest mode. They normally produce cortisol at around that figure - so any dose above that they don’t need to work, but switch off.

However, don’t panic, once you get to lower doses in the majority of cases they do start working again, but occasionally not. It is rare if they don’t, for example I started at 80mg and it took me 4.5years to get to zero - and mine are working fine now - they did stutter a bit thought, but eventually got the message!

This might help a bit - it also gives links to other useful reading. Don’t be too overwhelmed, it’s usually not as bad as it’s looks in black and white!

healthunlocked.com/pmrgcauk...

Ebn49
Ebn49 in reply to DorsetLady

Thank you for the reassurance and the info :)

PMRpro
PMRproAmbassador

SHE may never have seen anyone "as young" but she obviously hasn't much experience! Or done any reading. The guidelines are based on rather broader experience - and they say over 50. Someone said earlier that NICE say over 40.

It s a bit high, the usual concept is to use 15-20mg because PMR is said to be characteristic in responding well to such a lower dose, other things might respond to 30mg. About 1 in 5 patients don't have raised blood markers - although that may be a bit misleading since the "normal range" quoted is not for one person and its fine if it is anywhere in that range. The range is worked out for a population of 10,000 healthy people and runs from 1 to 20 - if your personal normal is low single figures, as mine is, it can run at 18 and no-one will remark on it because it is still within that range. But for you it is relatively high.

The adrenal glands don't really stop working - they know there is plenty of corticosteroid present in the body, albeit artificial, and so don't make any more in the form of the natural steroid cortisol. They still produce all the other things they make.

You could ring her and tell you have had a miracle - and see what she decides to do. And I would then immediately drop to 20mg which should also be plenty and you will already have dropped the dose by a third. I don't recommend doing that again mind!!!

Are you in the UK? You may never get to see a specialist! PMR is often managed by GPs and a good, teachable, GP is far better than a bad specialist.

Ebn49
Ebn49 in reply to PMRpro

Thank you PMRpro. That's reassuring, and yes, I get the idea that guidelines are based on populations rather than individuals. It's the reason I chose not to take Tamoxifen after having breast cancer, and an intelligent discussion with the oncologist!

I think on the balance of what's being said here I'll wait until Weds when I have a phone appointment with the GP, but will tell her my concerns. It was actually she who suggested a referral may be appropriate, because she said my case was different to those she normally deals with and (I suppose) doesn't feel confident about making the diagnosis herself, but let's see.

PMRpro
PMRproAmbassador in reply to Ebn49

Lord knows who she normally deals with then! Over 70s maybe ...

But I trust she won't leave you on nothing until you see a rheumatologist. It could be a long wait - and in some places you might even get rejected. You sound pretty typical - do you know what your ESR and CRP are by the way?

Ebn49
Ebn49 in reply to PMRpro

Hi - well I do live in Eastbourne, and according the the BBC: "The Meads district of Eastbourne has the oldest average age in England and Wales, the Office for National Statistics (ONS) said. The average age in the district is 71.1 years compared to the national average of 39.7 years." !!

I wasn't told the details of the blood tests, no, but I could ask.

PMRpro
PMRproAmbassador in reply to Ebn49

Always interesting and something to add to the diary for future reference.

That is one specific area of the town is it? I thought there was some village in Devon with the highest average age. And explains why your GP sees mainly older cases ...

Dr Sam has a very good reputation

michelham.com/consultants/s...

You are not too young, there is a genetic factor and the usual start dose of Pred ranges between 25 mgs and 15 mgs. Most of us start at the low end. There’s not much long term value in giving it a high dose blast. However, I bet you feel pretty good. I hope this helps to confirm your diagnosis so that you can get on with a treatment regime.

Ebn49
Ebn49 in reply to SheffieldJane

Hi SheffieldJane, yes I do feel very good, I feel EPIC actually!! I am so glad I kept a diary of the last 2 months since the real onset of symptoms, cataloguing everything in detail, otherwise I would feel like a fraud now. Thank you for your good wishes.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Ebn49

The reason why you feel EPIC is the Pred! Approx 4 times your normal level of cortisol - like a child that’s been at the sweetly jar with no parental control!

It’s not actually doing anything for the underlying illness, so don’t get too excited! Just enjoy the extra temporary energy and hopefully the permanent lack of pain.

Ebn49
Ebn49 in reply to DorsetLady

Ha ha! yes I know the illness hasn't gone... but as someone suspicious of Big Pharma, and having had an unhappy brush with steroids in the past, I have to say I've NEVER been so happy to be taking the meds.

Hidden
Hidden

30mg does seem very high for a diagnostic tool if that is the only reason you have been given it? Normal test dose is 15-20mg as higher levels can also reduce symptoms of other conditions so are useless for dxing PMR. I started on 15mg and are still on that dose - I'm 59 and my markers were also normal - my rheumy told me 15% of PMR cases have normal markers for inflammation by the way . Glad it works for you so well though - took a whole week for 15mg to have same effect for me.

Ebn49
Ebn49 in reply to Hidden

Hi TonCh, and thanks -

Well I can only hope there's nothing else it could be masking... but from what everyone's saying 30mg seems a bit high but then again if I'd had a lower dose perhaps the effects wouldn't have been conclusive within the 5 day time frame... hmmm, so many ways to look at it.

Hidden
Hidden in reply to Hidden

You may be misdiagnosed. Nearly everybody notices effects in a day or two. You felt it in a week? Combined with the ability to run within target of your pr tells me you may have something other than pmr. The pmr I have Would not allow me near my pr Soon after diagnosing. I probably could have gotten close but would have paid for it dearly afterward the next day particularly. Just odd that you are completely different than anybody else with pmr. I know you’re healthy but I was too. Running twenty five miles a week, biking eighty, and swimming two miles. I was on top of my game. Only to be crippled, essentially. But within six hours, I could feel the prednisone working.

Hidden
Hidden in reply to Hidden

I did have all the classic symptoms and have tests for everything including Lyme disease - everything negative ! Pred did start to improve stiffness slightly after 2nd day and everyday after better. My GP was reluctant and referred me to Rheumie who says probable PMR. Waiting for liver scan and PSA test for prostate cancer, but how does prostate cancer give you stiff shoulders? 😂😂

Hidden
Hidden in reply to Hidden

Lol. My gp and rheumy had me doing the same thing. Mine went a step further and wanted me to have a colonoscopy too. Luckily everything turned out negative. I think the cancers can trigger pmr by getting your immune system all excited to attack things. I guess that’s why men at our age with pmr get common types of cancer tests. I sure miss racing this year. Going to do a sprint tri later in early fall. Just going to muffle thru it.

Hidden
Hidden in reply to Hidden

really scared now as apparently one CAN get PMR-like stiff shoulders with advanced Prostate cancer which is also likely to have spread to the liver. I'm having a liver scan because i also have a tender spot on my liver!!!! Will this nightmare ever end? My GP wanted me to have a PSA too last month, but i declined as it scares the hell out of me.

Hidden
Hidden in reply to Hidden

I’m sure you’re fine. I think you would have other symptoms other than pmr and minor aches. Hang in there bud. Take your test and just think of it as going a small speed bump on the way to the podium

Hidden
Hidden in reply to Hidden

great news !!! PSA negative along with various other non-cancer conditions - phew! Just liver scan now to worry about.......

Hidden
Hidden in reply to Hidden

Cool. I understand your cancer test anxiety as I went thru the exact same steps a month or two ago. I find it odd getting pmr when I was perhaps some of the best shape of my adult life. I think I could have been pushing my body too far. I was so healthy, I didn’t even have a cold for years. Then a few days after appendectomy, the pain started. It was like my body just wanted to attack itself cause it was bored and thought it had to attack something due to the appendectomy. Anyway, I find it odd that you to were attacked by your body when you were in great shape. Makes you think being too healthy makes your immune system bored and when it gets an invader it goes crazy and doesn’t know how to stop fighting

I was 52 when I got PMR- 59 (very nearly 60 ) now and still have it.

Well yes! I was started at 20mg for six days, then moved to 30mg to get rid of the inflammation. This may have been a bit over the top, but it worked for me. I stayed at 30mg for three weeks then down to. 25mg for two weeks, 20mg for two weeks, 17.5mg for two weeks, then to 15mg, whereupon my taper slowed down significantly. After four and a half years I'm now at 2.5mg. It's been a very slow taper, but I have avoided any "flares".

I think the problem at diagnosis time is finding out what dose you need at the start to clear any inflammation. It's a bit of trial and error, and everyone is different.

Good luck

Paddy

Ha!

As though autoimmune diseases read calendars!

I was 61 when I was diagnosed. There are people in this group 50 and under who have also been diagnosed.

They also initially tell a lot f us it only lasts 2 years.

Ha!

I was 56!

Started on 40mg - worked like a miracle - taper ok - I am 66

I can't answer your question but I CAN tell you I was diagnosed with PMR at age 56. An immediate suspected diagnosis by my GP, a very speedy appointment with a rheumy (only a matter of days but I'd practically ceased up by then) straight onto prednisolone and such relief after just 24 hours. My initial dose was 15mg.

Yes, Ebn49, I did. I was several months without any treatment, getting progressively worse. My osteopath had felt sure it was PMR and sent me to my GP, but the ESR and SCR results hardly rose above the normal spectrum. (ESR, range 2-20, once jumped to 27, otherwise normal. The SerumCRP, range 0-7, jumped at the same time to 13, otherwise normal, but neither were considered high). This was in 2016.

In the end I had a teary meltdown in the surgery, not proud of that but was at the end of my tether, and was told I could try Pred as a last ditch diagnostic test. The trainee GP prescribed 30mgm. By then I’d found this forum and knew 30 was a higher than normal starter dose. Didn’t argue! After a couple of days of pure magic (was pretty sure I could fly, climb Everest etc...). I just quietly reduced to 25mgm.

Seeing my own GP a week later she accepted it was PMR and ever since has referred to mine as ‘symptom led’ though I still have regular blood tests to be sure. Dropped through 25 to 20 to 17.5 then to 15 reasonably quickly and once I’d joined the more common dosage level ever since used the slow taper, small decreases, everyone else has written about.

Hope things improve for you - good luck

Ebn49
Ebn49 in reply to Mai45

Thank you Mai45 that's really interesting.

Started on 15mgs, upped to 25mgs, for a week before full relief, then dropped to 20mgs pretty quickly. Tapering slowly, now at 10mgs after two years. We’re all different and have different pain thresholds. I found PMG pain very specific and different from the aches and pains exercise helped.

Good morning from the US. I was 53 and started on 15 mg prednisone in 2017. I have tapered, with a few bumps in the road, to 7.5 mg. I describe myself experience as the Tin Man in the Wizard of Oz. Once I had that oil in my body, I was like a new person within the first day. Best of luck to you.

Ebn49
Ebn49 in reply to JanetGarrettN

The Tin Man! Ha ha! Yes I said this morning to my husband it's like someone has squirted WD40 on all my moving parts :)

Hidden
HiddenAmbassador in reply to Ebn49

That's a result!

JanetGarrettN
JanetGarrettN in reply to Ebn49

Yes great minds think alike, LOL!

Yes, I started off with 30mg. After a year I'm down to 7mg with one flair.

My GP started me with 3 days of 40mg, because my symptoms were so debilitating then drop to 20mg. I am now tapering.

Hi, I am 53 and my doctor wanted me to do a week at 40mg. Spoke to another GP who told me to go on this forum, as it was the best place to look for information, and make my own mind up. As a small woman I opted for 15mg which I have been taking for a month. I have read that some GPs like to hit with a high dose to confirm PMR diagnosis, then immediately taper. Glad to hear you are feeling so much better.

PMRpro
PMRproAmbassador in reply to selkie2019

But the point is that a high dose like 40mg would get a result with other things - the moderate dose is the slightly dodgy diagnostic test.

I was diagnosed at the age of 54 and started on a dose of 15mg. it seemed like a miracle! Good luck.

Just wanted to say thank you all so much for sharing your own stories for comparison and for all the advice and encouragement. Tomorrow I'll be speaking to the GP about how the trial has gone. Although today I was having some gnawing niggles in my right buttock and felt rather tired I think it's maybe that I've just been overdoing things, in my enthusiasm (swimming, walking, gardening in the hot weather. But its a miracle to be able to (eg) squat down to empty the washing machine without thinking twice. I guess patience will be one of the hardest things for me to learn, but I will. Thanks again, brilliant forum.

:) :)

Telian
Telian in reply to Ebn49

Best wishes Ebn49. Savour the moment!

selkie2019
selkie2019 in reply to Ebn49

Great news. All the best and keep us posted x

I was started on 30mg, it did the job though and 8 am 58yrs old, GP not convinced at firs5 but further bloods indicated that I did have it, together with the rapid relief from steroids. Best of luck,

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