"Highly Recommended" : Keeping in mind, I'm still a... - PMRGCAuk

PMRGCAuk

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"Highly Recommended"

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Keeping in mind, I'm still a "Newbie," (140 days since diagnoses) and I haven't read a great deal about Steroids in general... I must say I really enjoyed this book! Others, who are more well read, or who have extensive research experience, may find it naive and/or amateurish. However, I found the fact that it is written by two sisters (one who is diagnosed with and living with a debilitating chronic illness, and the other, a well respected doctor at a major Boston hospital, helping her navigate though the disease and treatment) added a very human touch... one that I could relate to. You are often given two perspectives, of the same situation, which makes it quite interesting and a bit humorous. This edition is the "revised and updated" version, so both authors are able to look back retrospectively and explain why they thought/felt something, that at the time seemed appropriate, but perhaps today doesn't hold true.

Easy to read, informative (if you are not already an expert) and relatable.

39 Replies
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Thank you! Sounds really interesting.

Sounds good, will explore whether I can download for my kindle. Shelves in every room groaning with books. Thanks for posting.

Hidden
Hidden in reply to SheffieldJane

YUP! I have 15 boxes of books in a lock up, as we moved from a great flat that had two floor to ceiling bookcases, into a flat with none!!!!! : (

SheffieldJane
SheffieldJane in reply to Hidden

We just took several bin bags of books to a Charity shop. It hardly made an impact. Every time I try to sort them I end up curled in a corner with a discovered book. I love books!

Hidden
Hidden in reply to SheffieldJane

Me too!!!!!

Rimmy
Rimmy in reply to Hidden

BOOKS !!! - we harbour 1000's of them !! - we have TRIED to stop collecting any more and I seriously 'attempt' to recycle any non-library books I have just finished - but can't part with our vintage children's books, AND the art, photography, philosophy, medical, psycholgy, biographies, poetry books - um well ALL of them really .... 'digital' ones just don't 'do it' for me I like to hold them - I even like the 'smell' of them despite the fact I choke on paper 'dust' - it's truly one GREAT addiction I intend to KEEP !

Hidden
Hidden in reply to Rimmy

I love real books! I like holding a book and the way it feels... and the way it smells. I resisted kindle for so very long until I broke down a few months ago...

Patience47
Patience47 in reply to Rimmy

Me too.

I've got to the stage where I can read a book and think it seems familiar and then realise I've read it before. Old age is kind in that way!

Hidden
Hidden in reply to Pongo13

I'm at the stage where I can watch a movie, not remember seeing it and enjoy again!!

Pongo13
Pongo13 in reply to Hidden

Yep! I recognise that! ( do you, like me, struggle with passwords for everything too?! I'm quite looking forward to being microchipped one day in the future!).

Hidden
Hidden in reply to Pongo13

Passwords.... KILLER!

It’s not on Kindle but can be got cheaply on Amazon. I guess you are on Prednisalone being in the U.K. Prednisone operates a bit differently in that I think the body has to convert it into the Prednisalone that we take. Not sure how much that impacts on the effects. Also, there have been studies since the book was first published. Some of them good news like the one PMRPro posted about long term side effects. Will probably give it a whirl though. Thanks!

Hidden
Hidden in reply to SheffieldJane

Yes, there are slight differences between Prednisone and Prednisalone, so not sure how that impacts the "coping" strategies... I just found it interesting and entertaining, and I like the written by two sisters, personal aspect of it.

PMRpro
PMRproAmbassador in reply to Hidden

The only real difference is that prednisone must be processed by the liver to form prednisolone which is the active form - which means the effects are due to the same substance. The doses are directly equivalent. Someone with liver problems may find prednisolone works better than prednisone but some people find one manufacturer's pred works better than that from another manufacturer - then it is mostly to do with the fillers used to form the tablets. Methylprednisolone is a different structure - the methyl group attached to it is said to make it more effective. But it also increases the potential for side effects - as I found to my cost!

30048
30048 in reply to PMRpro

Thanks for that clarification. Try to get that from a doctor. 😂

PMRpro
PMRproAmbassador in reply to 30048

They tended to sleep through their pharmacology lectures I suspect...

30048
30048 in reply to PMRpro

Yes...I am afraid they slept thru a lot.

I'm reading so much and firmly believe you have to make change or things stay the same. This can, however, lead me to confusion - for example, I read somewhere organic apple cider vinegar was good for ? (goodness knows what....steroid brain) and have concocted a disgusting drink to which I add turmeric, cinnamon and lemon. But yesterday, due to current oral thrush nightmare, I find I should avoid this on a candida diet. Sometimes I fear for my sanity. What I can say is I shall be ditching the disgusting drink for the time being! And I shall put this book on my reading list! I am a bird with a small brain and it seems easily befuddled. Enjoy the bank holiday! Im off on a wet dog walk now.... X

Hidden
Hidden in reply to Pongo13

I hear you! I try to take everything I read with a "grain of salt." There is so much conflicting information out there, it's easy to get befuddled!

I just happen to stumble across this and I found it interesting and entertaining... it didn't change my life!

Enjoy your wet dog walk! I so jealous!!!!!!

angiek
angiek in reply to Pongo13

Pongo 13 - its not just small brained birds that are befuddled tho-One Green Planet.org tells me that apple cider vinegar ( with the Mother) is a wonderful REMEDY for thrush!!! And I do believe that for me it has worked. I add a tablespoon to every litre of water that I am drinking throughout the day and hardly taste it at that dilution, it has also (touch wood) got rid of the acid reflux which I was plagued with last year!

I'm also about to brave the elements on a dog walk- between my daughters and I our 5 spaniels are going stir crazy! X

Hidden
Hidden in reply to angiek

Five!! Not mad Springers surely. That's a lot of mud to hose off! Enjoy.

angiek
angiek in reply to Hidden

One cocker, four sprockers! Duly walked, was fun even in the mud! The aftermath in the car and house not so much fun tho!

Hidden
Hidden in reply to angiek

If I had known you could have taken my cocker. My sister used to say she was a sprocker but she's a working cocker. I bet walks are full of activity!!

Pongo13
Pongo13 in reply to angiek

Dogs dried, and sitting with more of the dreaded drink disguised in green tea. I shall persevere angiek x

There was a lively thread about cider vinegar some months ago. You didn’t dream it. Sorry about the Thrush!

PMRpro
PMRproAmbassador in reply to Pongo13

The organic apple cider vinegar stories are probably worth taking with several grains of salt!!!! Marketing...

On the other hand, this is an interesting read:

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

The thought of drinking even 20ml of vinegar in water before dinner doesn't appeal greatly - the report of the woman who drank 250ml per day is just mind-boggling!

Slowdown
Slowdown in reply to PMRpro

Very interesting article, especially in relation to blood glucose control in Type 2 diabetes. Salads with oil and vinegar dressing - my favourite lunch. Thanks for this info.

PMRpro
PMRproAmbassador in reply to Slowdown

Mine too - providing the salad leaves are something more exciting than iceberg! I'm in Malta on holiday - you can have iceberg or something local resembling romaine. The appartment doesn't have a salad spinner so unfortunately, iceberg it is!

Slowdown
Slowdown in reply to PMRpro

Not feeling TOO sorry for your leafy deprivation since the sun must be shining in Malta. You could revert to the old tea towel method of 'salad spinning' as a last resort. Anything rather than iceberg... Enjoy your holiday!

PMRpro
PMRproAmbassador in reply to Slowdown

The only tea-towel they provide is a towelling one...

The sun IS shining - but it is pretty windy. Onto our balcony today for the first time - usually it is sheltered! But infinitely preferable to the UK this week. Home is similar sun to here now - except minus whatever overnight so the mornings will be perishing.

Hidden
Hidden

When I was tapering off lanzaprozole I took a dessertspoon full everyday for a few weeks and it seemed to help And was okay with it neat. I have cooked with Apple cyder vinegar for years. No idea if it does me any good generally but I like the sourness tinge.

Thank you !

Thanks for this! Every little bit of information helps with getting through.

How funny, I just finished this book a few days ago. I found it to be very informative and liked that it was from the affected persons point of view.

Hidden
Hidden in reply to Sunnyd7

I enjoyed it too!!!!!

Thanks for recommending it- sounds good. Will give it a whirl!

I just finished the book. I found it lacking in the technical sense. I had the feeling it was “dumbed down”. And many parts were vague. That may have been because it was for such a specific disorder. But it offered good resources. My favourite part was where the doctor told her sister (as she was looking to change doctors) to be sure & check the doctors medical school. When she finally got around to it, the doctor responded. “Belgium. I couldn’t get into any school in the US.” The best part - he was super!

Hidden
Hidden

Hi ConventCassieYes, I totally agree, which is kind of why I enjoyed it so much!

I read a lot of medical/technical/research type abstracts (on PMR/GCA) that go right over my head... Or I have to spend a huge amount of time researching the language or studies they reference, that I forget the gist of the piece I'm reading!

I did mention that people more well read (on the subject matter) than me, or who have had extensive "research" experience, may find it naive and/or amateurish; happy you read it though, ...and yes, that Belgium trained doctor was brilliant!

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