PMRGCAuk
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PMR Diagnosed today.... is 30mg start normal?

So, after a few months of wondering why i was aching all the time and a couple of visits to a chiropractor I finally went to the doctor (a locum) who said "it could be PMR - get some blood tests and come back". That's all taken a month. And today i had a booked call from GP who hadnt read my notes, asked me what I wanted and then, after asking me which muscles hurt (?!?!) decided i have PMR and wrote out a prescription for Prednisolone and told me to take 30mg a day and come back in a month.

Of course, as soon as PMR was first mentioned, i read everything i could. I'm so unhappy and scared and would really value your help, advice and support. BTW, the gp didnt even mention GCA, so i am so grateful to your forum for bringing this risk to my attention.

Anyway, I have three questions:

1. why have i been put on such a high starting dose? - is this normal?

2. should I be taking any supplements - eg calcium?

3. I have already started addressing my diet: I don't eat meat but I am forcing myself to have oily fish. I have cut out dairy and sugar. I don't eat processed carbs (bread, pastry etc) but should i be concerned about natural carbohydrates (ie, pulses etc)?

Thank you.

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Welcome to the gold standard for information about PMR.

In my (non-medical) opinion, Your 30 mg pred dose is a bit higher that usual for an initial dose to treat PMR, however...it will most certainly ease the discomfort you have been experiencing.

My first dose was 20 mg for a couple weeks, then 17.5 for a week, then 15. There was very little concern about any serious tapering efforts until I had been on the drug for several months. I was diagnosed in Sept. 2013, and currently use 3 mg prednisone.

As you have noticed, we have the experts who can help you wind your way through the challenges you will be facing. It sounds like you have already begun to educate yourself on many of the issues, so just hang in there, and our Wise Ones will be along to answer your questions.q

Kind regards, Jerri

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Ah, thank you, Jerri! I have, indeed, been reading everything i can get my hands on. I have never been good at being told what to do unless i understand why - so I am reluctant to just start taking loads of chemicals unless it is absolutely necessary!

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Wise girl😁.

My mama always told be to be very leery of strangers in white coats who want to give me drugs..

.therefore, my responsibility is to be an active participant in the management of my own health issues...

I educate myself so I can understand, then ask questions that may challenge doctors,... to explain rationale, outline options and identify alternatives.

Ultimately, I am the captain of my own little dingy. ⁉️

You sound like one who shares a similar philosophy...welcome...

Be patient just a bit longer,...i hear PMRPro sharpening her pencil🤣

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BTW, my bloods showed an ESR of 40 and CRP of 20 which, according to the GP, is not particularly high.

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1) depends on the doctor and it is probably OTT but he didn't bother to read the latest guideliness. They used to use 30mg about 10-15 years ago. Why not try 20mg and see how you get on? Would have you nicely on a reduction if it did. (Personally I wouldn't tell the GP until a much later point.)

2) No hurry - you will need calcium/vit D supplements if you stay on pred. Maybe it won't work - and then the doctor will stop it.

3) Just worry about processed carbs - the rubbish stuff. And if you don't LIKE fish it won't be the end of the world. Vegetarians survive PMR too.

I suppose it is all relative! "Your" normal ESR could be 4 (like mine) and then 40 is pretty high. Anything above 20 should be regarded as raised (unless your GP is a dinosaur). And a CRP of 20 is pretty high in my book. Yes, it can get much much higher. But raised is raised...

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OK, great, thank you :) Yey... no fish!!!

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Funny thing, I didn’t much like oily fish before, always gave me indigestion and repeated for hours.

After starting pred, I thought I probably should persevere, and found I loved it and eat it at least every other day now. No indigestion. Almost a craving! That and eggs, didn’t like them either, love them now. And coffee, but restrict that to an occasional milky one. Weird this pred thing!

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That is odd. The main thing i have against eating fish is, that they were once alive - but also all the pesky bones that make eating it so tedious and ruin most mouthfuls. But maybe i will change!

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I do eat whole fish when someone prepares it for me - but at home laziness rules and I happily pay the extra to have salmon fillet. Our fish girls are very good - not a bone to be found 99.9% of the time!

Being veggie is different though...

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Oh yes sorry, WELCOME to the forum :)

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See, I told you so🤣🤣🤣😂

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:)

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Hello MakingDo and welcome to the site. You’ve picked up so much already! Yes 30 mgs is a really high dose unless GCA is suspected. A normal starting dose is anywhere from 25 mgs to 15 mgs. Most of us start at around 20 mgs. Stay on it for a month and if everything has settled then begin a very slow taper down, maybe 1 mg a month. You should definitely have been prescribed Adcal - vit D and Calcium. You should also request a DEXA scan to assess your bone density. I would get those results before accepting a prescription for Alendronic Acid or its like.

As for diet you have got the right idea and should manage to maintain a stable weight if you stick to it. The people who cut out all carbs and sugar do the best.

Stick with us fairly intensively at first. You will find that the company, shared experience and the humour keeps the fear at bay. I would query that high dose though, it’s probably making you feel nervy, but it won’t hurt you. People with GCA often take twice that amount.

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OK, thank you Jane - GP told me to start taking it tomorrow, so I will see if I can question the amount first thing... I am so annoyed i didn't think quickly enough to ask her at the time. But I havent even met her, so the whole process has been very disconcerting.

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.... now that I have read PMRPro's advice (stupidly I started at the end and worked backwards - doh! - i'll start on 20mg and keep quiet - fingers crossed that will work

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I started at 15, which for me worked in less than three days to eliminate all PMR symptoms. I stayed at that dose for four or five weeks then began a taper, quite fast at the beginning, doctor's orders, 1 mg a week. But at 9 mg had to go back to 10 for a couple or three weeks, and after that started the dead slow taper which I have used with success ever since. I have never had to go back to my initial starting dose so really only had a couple of months or ten weeks above 10 mg. Everyone is different. I've heard of a very few people starting with only 10 and still being all right, and that is about as much too low to start as most of us would consider 30 too high. Can you ask your doctor why he started you at 30? Maybe it would be okay for you to go to 20 right away, especially if your symptoms have been well relieved very quickly.

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Greetings and Welcome, MakingDo :-)

Just a quick non-professional opinion from me, but based on personal experience:

Your introduction to PMR sounds fairly typical. 3 years ago, my GP also speculatively started me on 30mgpd Pred based on his interpretation of my presenting symptoms and his knowledge of these things. 3 months later, a Rheumatologist formally confirmed my PMR diagnosis and we went from there. At the beginning of the PMR Journey, there is so much still to learn about what can follow - as I well-know.

I won't venture any opinion on diet etc, since everyone's health and personal contexts are so different. But just to endorse 1Purplecrow's comments, you are in very good and trusted company here for support and advice.

Please keep us all posted on your progress - and try to keep smiling on this often unpredictable and confusing health Journey. On the positive side, things can and often do get better as time goes on. I'm sure the forum's 'Aunties' (experts / Veterans) will be along soon with their thoughts too ;-)

With best wishes

'Uncle' MB :-)

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Thank you - that does make me feel re-assured :)

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No worry, all 'part of the service' in this community..! ;-).

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Hi making do

None of us wanted to go on pred but as you have probably gathered looking at this forum is that it is the only thing that controls or dampens the inflammation. At least you can control the dosage of steroids using pred.

I have been veggie for 30 years and wouldnt include animals in my diet. If you want more omega 3 then include linseed etc. I eat legumes and pulses and occasionally quorn. You can follow a low carb high fat diet which will make you feel better anyway.

Dont let all the hype about pred put you off. Take it for a couple of weeks at 20mg as suggested and if it helps then you can make informed choice. Good luck.

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ok, thank you. I do add linseed to my porridge and homemade sourdough bread so it's good to know that should do me - i really don't like eating fish :)

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Rapeseed oil is good too. Glad to help.

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ok, great - i use rapeseed oil regularly so that's good - thank you :)

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Rapeseed (or canola) does not have the same cardio protective activity as olive oil, much to the surprise of researchers who thought it would. What I saw wasn't investigating inflammation, but I'd be wary of assuming canola is useful. Certainly in Canada nearly all canola is genetically modified although the original canola was developed from rapeseed through selective breeding. You will be eating the selectively bred oil, whether called rapeseed or canola, as original rapeseed was not fit for human consumption due to high levels of erucic acid. Whether vegetable sources of omega 3 (eg linseed) have anti inflammatory qualities, or indeed whether even seafood sources do, still seems to be up for debate according to what I could find on the internet (discounting sources such as mercola and axe - sorry, any fans out there). I do take a little hempseed oil every day, but I suspect the main benefit is a few calories, which I need.

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Thanks I remember years ago there was a big hoohahon the Asian continent about rapeseed. I just take it as there is not much veggie that provides omega 3. I use organic when I use it which is for stir fried. Anything else I use olive oil. I use linseed/flax for main omega 3.

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Yeah, that's the problem, vegetable sources may simply not be giving us what we need after all. That's why I tried to find some research, and the main article I found indicated that in a controlled study neither the seafood nor the vegetable (I think linseed) had any effect on inflammatory markers in the subjects. Now, they did use healthy adults so it would be more pertinent to study those who are ailing and have elevated markers because of our ailment. Which is why I think it's all still up in the air. Note that I haven't given up my hemp oil, which apparently has a very good omega fats profile. One lives in hope!

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I have ground linseed hemp and chiaechiefs on breakfast and live in hope.

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There's a kind of mix I can get here, it contains chia, hemp and quinoa and has to be soaked (in the milk you'd put on it anyway) before consumable. I should eat it more often, especially as I don't eat any of the traditional breakfast cereals any more. I got out of the habit because the chia seeds get caught in my teeth. 😣

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Ah, chia pudding with almond milk is lovely. But not really does need to soak overnight- which is hard to remember. I have been making chia seed biscuits (DeliciouslyElla recipe) which are a good mid afternoon snack. (Chia, ground almond, almind milk and a few medjool dates). Surprisingly good!

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I read yesterday that medjool dates are supposed to be high in calcium and good for bones. See heading no 6: draxe.com/medjool-dates/

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Lovely with walnuts.

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Mmm ok i suppose the thing is to use a variety of oils and seeds to try and cover all basis.

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Not a bad idea. It's true that we need fat in our diet in order to properly absorb our fat soluble oils, which include D3 and K2, both so necessary for bone health. My money is on genuine olive oil There are a few oils which seemed to be healthy in the past but are now considered less so, like sunflower seed oil. And I do love a little bit of butter, but use it sparingly. Like the King in the poem by A.A. Milne, I do love a little bit of butter to my bread!

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No - definitely someone who likes a bit of bread with my butter...

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Haha. We arrived in England when there was still some postwar rationing and I remember my uncle remarking that I should have butter with my bread rather than bread with my butter. I guess I was about to use up the whole week's ration on my toast!

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I got a copy of rose Elliot low carb for veggies which has at least given me ideas. I Am here are other books too.

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Gosh, Rose Elliot is a name from the past! - i think i had one of her books in the days when Sainsbury's used to sell them for 99p at the end of the check out! - Good call, i'll check it out :)

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Bet you can't even get them second hand for 99p now!!!!

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I notice several of her veggie books are 1p on Amazon but you need to pay two pound eight postage!

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LOL!!!!!

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Car boot sales are the way forward :)

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There are some recipes of hers on her website...

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Hi MakingDo,

Welcome,

You’ve had great advice, so I won’t add to it , other than say -a bit more reading that might help

healthunlocked.com/pmrgcauk...

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Ah, thank you - yes, this was an extremely useful read - and has already been distributed to my son and daughter :)

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Wow! I don't know why I am still shocked at how little doctors know about PMR and GCA, but I'm Gobsmacked!!!!! I wish you the the best on your PMR (maybe GCA journey). Perhaps ''tis will be useful.... rantingsofamadwomanblog.com...

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Welcome to the community, MakingDo. So sorry that you had to find us, but glad you did. 1PurpleCrow mentioned that it's the gold standard for information about PMR -- it is for GCA, too.

This is a pretty fabulous forum. And a huge reason for that comes from our members, particularly a couple of our members: DorsetLady and PMRpro. (There are of course many others that should be named, but I'm just going to mention them today.) When they talk/type, listen. This is how great they are: There are over 500 communities in HealthUnlocked. Recently Health Unlocked did a survey of all of the communities so that they could recognize members that went above and beyond. Out of the thousands of members in all of the communities, these 2 ladies got the award for "impacting lives of members in the most positive manner". We are pretty proud of them (and grateful to have them.) So know that you are in good hands here. Don't be afraid to ask questions!!!!

I see that you know PMR's wicked sister, GCA. Please make sure that you familiarize yourself with the symptoms of GCA. Any changes in sight, etc. hightail it to your doctor (or ER)!

Again, welcome!

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Thank you - the support i have received in such a short time here is fabulous. It is a truly amazing community. :)

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Hi there. You have landed in the right place for invaluable advice. The thing you will have noticed is there isn’t a one size fits all treatment for PMR.

I started on 40mg as I have GCA too. The common thread though is to try to reduce as soon as the inflammation is subsiding

After 3 months I am now tapered to 17mg with (so far) no returning of symptoms.

If you have more specific questions the search facility on this site will bring you excellent pieces with great advice

The shock will pass and you will get your head around it,

Keep reading !

Best wishes

Karey

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So, I sat staring at the pills for quite a while this morning before I finally took the plunge. (I was strangely scared! ) luckily a family friend who is a gp with special interest in Rheumatics also advised starting lower so I’ve taken 15mg on his advice and will see how it goes. ...

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I felt better in a few hours but some can take a couple of weeks. Uptake into the body varies between people. Fingers crossed for you.

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I will try to be patient. It has been up and down over the last few weeks so today might be a good day - or it may be beginning to work. I definitely feel better than yesterday... Yey! Off to Yoga now :)

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15mg was plenty for me - but the latest guidelines/recommendations are to use the lowest effective dose in the range 12.5 to 25mg. If 15mg isn't doing it - don't be afraid to try 20mg.

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Yes, ok. Thank you:)

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Welcome to an incredibly helpful group (even tho’ nobody actually wanted to join). The experts have covered your concerns, I’ll just add my two penn’orth about your 30mgm starting dose. I’m also straight PMR, luckily not GCA. Through a misunderstanding between my own GP and the trainee GP who wrote the scrip, I was started (late 2016) on 30mgm as well.

As there were several months between PMR landing and being officially diagnosed I had, like you, already found this forum and knew 30 was high for a starting dose. I felt fantastic on 30 (thought I could fly!) so took a punt on my initiative and dropped to 25 within a couple of days. When I next saw the GP I told her what I’d done and with her approval then dropped again over a couple of months, first to 20, then 17.5 then to the 15 most people started at. It all worked fine.

Since then I’ve tapered slowly in much smaller decreases, as advised on here, now down to 5. So if you decide to drop down a bit from 30 on your own volition - and still feel fine - give it a try. Good luck

PS: Just saw your latest post, think we crossed. You’ve certainly taken control with a 15mgm starting dose. Wish I’d had that courage... good for you!

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Thank you, Mai45. It is extremely helpful to hear about your experience. How long did the euphoria last? Did you have any other issues while you were on the higher doses?

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Only keeping away from high windows!

Seriously, the 30mgm hit it so comprehensively it was like a miracle. I felt so well, so full of energy. It was advice from a good friend who works in a pharmacy that also encouraged me to cut the dose. She heard me burbling on the phone about how great I felt and warned me about the euphoria of higher dose pred.

Since then there have been the odd hiccough, of course, but basically as long as you take it steady, remember that Steroids are masking the symptoms not removing them, it’s ok. The hardest parts are the waves of exhaustion that arrive out of the blue, the learning to slow down, rest and pace (not that easy) - and the moustache!

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Eek, moustache!?!? Oh happy days 😁

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70s style s'stache and sideburns a la Elvis are de rigour dontcha know.

It goes so don't worry and no one else admits to seeing it when I point it out. Either i have lovely friends and family who are all liars or it's not as visible ible as I imagine.

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Ok, I’ll try to pretend I didn’t know about that then. Otherwise my natural competitiveness might make me start trying to out do my husband’s beard!

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😂😂😂

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I could have used that 30! 15 was nothing (PC) & 20 was nothing (Rheumy). And I only weigh 90 pounds.

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Hi MakingDo

And there are others like me (a man) who only has GCA. I started on 60 mg Prednisolone for four weeks then was reduced by the hospital (I was attending the Eye Department after a biopsy which confirmed that I had Giant Cells in my Arteries) to 40 mg for four weeks, 30 mg for four weeks, 20 mg for four weeks, 17.5 mg for four weeks, 12.5 mg for four weeks and then down to 10 mg after eight months.

The headache that I'd had for 35-days went in three days and I felt wonderful then I found out I was going to be on the Prednisolone for 1-2 years and I'm still on it 4-years and 3-months later. My CRP readings have yo-yoed since reaching that first 10 mg dose and I'm currently on 7.5 mg where I've been for two months. Last CRP reading was 11 and I had this months' blood test yesterday so am waiting for the result before I decide to go up or down.

That's some of my sad little tale, I am not a normal GCA patient as I have Klinefelters Syndrome as well plus nine other conditions. Finding this forum was magnificent and I have learned so much and found lots of friends who are similarly affected.

I do hope your reduced dose is sufficient to ease your symptoms

Best wishes

Colin

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Thanks Colin

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Omg. Cute dog.

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Aha, that’s Millie our toy poodle. 😁

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Lovely. My dogs "husband" is a crossed poodle Jack Russell or a jackerpoo. His daddy used to be on emmerdale or crossroads.think they must have trained for for a few months. Poodles and thing with poodles lovely. I I have cocker but could hav e cockerpoo next but not wishing my poor little thing away.

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Ohh, a celebrity dog! Millies loves learning tricks - it's hard to keep her amused sometimes.

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