"New books about PMR" - the low down from PMRpro

[PMRpro]

Someone posted the other day about 2 new books about PMR they had found on Amazon. One is about myths in PMR and the other about current research.

healthunlocked.com/pmrgcauk...

Despite a degree of scepticism about this style of book, and because I am wonderful and love you all, I bought the myths one as it was only £4 or so as an ebook (even less really as my daughter funds my Kindle as an ongoing birthday/Christmas present). So here is my opinion:

To be brutally honest - it really probably is not worth the money, you can get everything that is in it free here!! The only plus I could think of is that it is all in one place and by ploughing through it, you will get a longwinded answer about each potential approach.

I suspect this is going to be one of about 20, each with a title linking it to another autoimmune disease! Even within PMR as a subject it was very repetitious. She deals with all the possible alternatives people will think of to try to manage without taking pred: supplements, acupuncture, reiki, massage, diet blah, blah, blah. So, a chapter each and I suspect she wrote one chapter and then went through changing "supplement" to "acupuncture" and adding the odd sentence specifically directed at the subject. Other than that, the same sentiments appeared again and again.

She was at least correct and consistent about her main theme: corticosteroids are the only treatment that works for PMR, none of the alternatives work and trying them may be dangerous because it delays proper treatment and the PMR gets worse.

I can't find much about her at all except she has been a health science writer for years. I think she may be Canadian because there was a mention of Canada somewhere. She mentioned prices in dollars - but not what SORT of dollar - and the obvious sources in the USA like the Mayo but the writing style wasn't I expect from American writers.

If anyone fancies trying the other book do go ahead and tell us what it was like. I didn't select that as it cost more!

[pmrdec112014]

Sitting here in the dentist waiting room when your post came in!Thank you for that PMRPro! That has saved some money and time!

Can't beat Health Unlocked and the sound support we get here.

Maybe I will write a book! I am sure I know it all really ( as most others here will too! ) and it would be first hand....

[PMRpro Ambassador in reply to pmrdec112014]

I do have to admit that I read it thinking - I could have written this!! But I didn't and tailoring replies to the question is more fun!!!!

[Longtimer]

I am waiting for your book, it would be a bestseller!

[PMRpro Ambassador in reply to Longtimer]

It's here - updated daily ...

[pmrdec112014 in reply to Longtimer]

I second that!Come on PMRPro!!!!!!

[tangocharlie]

I'm eagerly awaiting the next edition of Kate Gilbert's book and then I think somehow we need to get a copy of it to EVERY rheumatologist in the land and anyone dx with PMR should buy a copy to give to their GP. Provided it is suitably 'scientific' and evidence-based or endorsed by the charity to be acceptable to the medics of course

[PMRpro Ambassador in reply to tangocharlie]

The previous ones weren't particularly - but Kate has always emphasised it was her journey rather than aimed at medics.

[tangocharlie in reply to PMRpro]

Which is fair enough. Maybe an endorsement by a good rheumatologist would help?

[Polywotsit PMRGCAuk team member in reply to tangocharlie]

The new one is being co-authored with Dr Vanessa Quick who will be giving the rheumy perspective on the topics. And it will have a 'critical read' by another consultant plus a knowledgeable GP. So a bit 'upscale' on the evidence-based side as it will have to be for a doctor to put their name to it. We are thinking about finding a way to get a copy to every rheumatology service in the country, although the book will still be first and foremost written for patients.

There won't be any meal plans in it! 😀

[tangocharlie in reply to Polywotsit]

That is fantastic news, well done and thanks to you and all involved. The first Edition was a life-changer for me in helping me get better treatment

[PMRpro Ambassador in reply to Polywotsit]

Needs to be followed by a quiz that counts towards their CPD!!!

[Excelsior80]

Thank you!

[Excelsior80]

It seems odd that theres no 'about the author' section. Usually authors are keen to show they know something about the topic, professionally or personally. But I couldn't find anything on Cheryl White. Does she cite research or guidelines or is it take her word for it?

[PMRpro Ambassador in reply to Excelsior80]

I thought that too, I did look. Or maybe she realises people like us would rumble the duplicated attack!! Some chapters have a few references but I think I quote more!

[Sandmason in reply to Excelsior80]

Could be an AI book. They steal author's works....

[bright-horizon]

Thank you! I love your healthy skepticism though I long ago accepted that pred is the sole solution for GCA and PMR. Wouldn't buy such a book, so thanks for your sacrifice.

I've been taking Low Dose Naltrexone for over a year now and have found that the worst of my aches have noticeably eased. Three weeks ago the supply in NZ became unavailable and I've noticed a return of aching shoulders, arms and hips as well as increased fatigue.

Is it the change of weather? Is it the increased length of my morning swims? Is it the fact that our quiet house of two octogenarians has suddenly expanded by five additional humans, a dog and a cat? Hmmm? I'll know when the LDN supply is available next week.

[Rabbit090]

Could it have been written by AI, perhaps? Apparently that’s now rife in publishing.

Not that I don’t love my chatGPT - best way to create meal plans IMO!

[PMRpro Ambassador in reply to Rabbit090]

It could be - it has a very C&P feeling to it and I did wonder that. I found myself thinking, OK, I agree with this but this is very BORING!!!

Meal plans? That is based on what you can see in the fridge or freezer!! Very Italian habit - I have picked up the best ...

[Rabbit090 in reply to PMRpro]

It could do for sure, but I use it to come up with ideas that suit my nutritional goals. In fact, got blood test results last night very late and found I am quite dramatically deficient in vitamin D so was up in the wee hours trying to see what I could do diet wise and it created some daily plans with recipes and so on.

Not that there’s much I can do without eating more than my body weight in salmon at this stage. I probably need a whole lot more in the way of supplement (I already take AdCalD+). I learned a lot and slept very little.

[PMRpro Ambassador in reply to Rabbit090]

Vit D via diet - next to impossible I fear!! Lots of wild salmon, UV-radiated mushrooms and in the US the fortified products. You should have asked here - would have saved you the lack of sleep as I have all the numbers stored in my brain!!! I take a 4000 IU tablet, was daily, now alternate days. I know from experience that if I don't, my vit D level will slowly fall over months to very low levels. But you probably need to start with a very high dose course to fill the black hole.

[Rabbit090 in reply to PMRpro]

I do enjoy my little deep dives into stuff so it was OK. I found out some fascinating stuff about why oily fish is pretty much the only way to get Vitamin D (their diet of plankton and how they store the D they get from it, etc).

I’ll definitely be speaking to my GP. I am a little surprised they didn’t test for it without me requesting it, TBH, especially considering she told me it’s one of the few supplements they actually do prescribe!

[PMRpro Ambassador in reply to Rabbit090]

In that case, she should give you a couple of high loading doses but you get a better result with more and moderate doses before starting on a regular small dose to maintain it.

[Rabbit090 in reply to PMRpro]

I will ask. My GP is very accommodating and seems very willing to run tests that I request.

I’m also surprised that CRP isn’t a standard part of normal blood work. They might have caught this earlier if so I think. I’ve suggested to my daughter (she lives in South Korea) that she should make sure she asks for it when she has checkups. My thing may be rare, but if there is a genetic component I’d rather she’d not have any delays in diagnoses.

[PMRpro Ambassador in reply to Rabbit090]

Accommodating GPs are sometimes VERY useful ...

[Rugger in reply to Rabbit090]

When I was diagnosed, my GP checked my Vitamin D level and it was sadly lacking. I had a short course of VERY high dose drops (orange flavoured I recall) before starting on prescribed tablets, which I've been on ever since.

PMR: 2016

GCA-LVV: 2019

[proactive in reply to Rabbit090]

I think the blood test to check Vit D levels is quite expensive. In Canada, it is not covered, but the patient can pay for one if the Doctor orders it. Current price is about $62 Canadian. I think the attempt to save money in the health care system is why it is not routinely ordered.

[Rabbit090 in reply to proactive]

Interesting. My GP said tests for magnesium isn’t routinely done (and I didn’t get it) but she seemed happy to check D, folate and serum potassium.

[PMRpro Ambassador in reply to Rabbit090]

It is a bit pointless as blood magnesium doesn't necessarily reflect the level in the muscle cells which is where it matters. The blood scavenges from the cells to keep the blood level stable so the cells can be quite low without it showing in tests.

[Rabbit090 in reply to PMRpro]

There’s another test though, isn’t there? RBC much is more relevant? I guess there’s also a loading test where they inject magnesium and test the uptake in urine but that sounds like a big deal.

[PMRpro Ambassador in reply to Rabbit090]

Sorry - don't know what you mean? Another test for what?

[Rabbit090 in reply to Rabbit090]

Magnesium. I understood there was a serum test that’s not accurate at all and a RBC test which can detect long term deficiencies (although also not that accurate) and a loading test that’s more indicative of deficiencies.

[PMRpro Ambassador in reply to Rabbit090]

Oh right. Possibly but I doubt they are done routinely and a lot of labs probably don't do it.

[Telian in reply to PMRpro]

I recently had a 5 week course of 30000 Vit d (to fill the black hole as you say) prior to having my 2nd Zolendronic Acid infusion. Only found out by the hospital where I have the infusion. I’d been feeling unwell for a while with weakness and the shakes. Although they haven’t gone completely symptoms are much improved. I wonder why my GP didn’t think of it.

[PMRpro Ambassador in reply to Telian]

It is one of the first rule-outs you would think as the symptoms can mimic PMR.

[Telian in reply to PMRpro]

It certainly did mimic PMR. I do have other things going on like daily hypos - been as low as 2.6 for three consecutive days. Hopefully Endocrinology can sort me out. I go for a day stay next Tuesday after fasting for 18 hours. Hope I make it as sugars plummet when I do eat!

[Rabbit090 in reply to Telian]

So odd. Especially as the NHS apparently recommends D supplements for everyone in the winter months (I’ve now read). They clearly don’t have the courage of their conviction there!

[Telian in reply to Rabbit090]

True. I know it can be a minefield as to which illness produces which symptoms but they should check everything. I’m definitely more clued up now!

[Predniso141]

YOU really ARE a PRO!! Thanks!

[Musiclady18]

Thank you for your thoughts and synopsis of the book, very very helpful and wise advice. This site is the best resource for those trying to understand and make their way through PMR, thank you to all of you on Health Unlocked! I did purchase only one book on Amazon that is Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. Paperback – May 29 2016by Kate Gilbert PhD (Author) which I have found to be a very good book in finding my way with PMR!

[PMRpro Ambassador in reply to Musiclady18]

As I said further up - she is one of our own!!

[LemonZest11]

Come on PMRpro, bring us your book!! Mind you, with all that I've learnt from you, I could probably write one myself ... we all could! Instead of immediate responses, you could refer us to your book, "Section 3, subsection 4, clause 9, line 13". Go on, do it!!