Book: Living with PMR and GCA

It sure is on Amazon. I bought my kindle version. Two days ago. The paper version was also available, but I prefer kindle.

I think you must be talking about Kate's book?

OOPS, sorry the title was: Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition by Kate Gilbert. It mentioned the same PMRGCAuk, so I thought it was the same book as mentioned in the "pinned" addresses and resources.

I am sorry for confusing everyone.

Sorry Eric, I mixed the books up. I read:Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition by Kate Gilbert.

By mistake I thought it was th same as mentioned in the resources.

Totally my fault...

Hey, look at it this way, now lots more people know about all of these resources! 

If I remember rightly BOTH are mentioned. I personally have a predeliction for "Living with PMR and GCA". But then, I would 

I forgot to say it was Kate's book in my first reply -  Kate has written two

Kate was one of the original 5 - who were known as PMRfightersfive many moons ago. We all met on this forum and it is thanks to two tyneside GPs who started this forum that there are now 3 charities and support groups.

Kate  is now a Trustee of PMRGCAuk and was previously Chair. Kate became a Trustee on PMRGCAUK about 2 years after I had resigned from PMRGCAUK. Wendy Morrison runs PMRGCA South West and is Trustee on PMRGCAUK, Jayne we all lost touch completely. Perhaps one day Jayne will make contact.

Pam and I started PMR GCAuk North East Support a registered charity at the same time as I was a Trustee on PMR GCAUK.as well as Chair of PMR GCAuk North East Support.   I also had GCA and found it too much - so resigned the position as a Trustee on PMRgcaUK (I had GCA whilst the others 4 PMR).

Nearly 9 years on I still Chair, Pam is Secretary and we were joined very quickly by 5 others, so we are the Seven Silver Surfers + plus PMRpro whom met us 8 years ago when she was on a trip to the UK, when were launching the DVD  in the Centre of Life in Newcastle.

I was in my wheelchair outside when PMRpro arrived, we found a gem and PMRpro is glued to us, she cannot get away.  We have history.

I have now told you more than I ever would have because of one posting by koen1 who wrote "This is not the start of a discussion."

I have been told that in the second book the five are acknowledged.

Goodness me, it is about time I found the edit button on this site, I have just read what I have written and am appalled at spelling and grammar  - I cannot put it down to 'steroid brain fog, I have been in remission coming up to my 7th year.

Apologies all round.

Hi Eileen, hope you remember me, had my stomach removed in feb, hace had problems ever since after getting septasemia, then having to go to london to therasic surgion who saved my life, now have large hernia in my stomach cavity to which i am having surgery when   i am fit enough, however my PMG has come back with a vengance, mornings are so bad especially when i wake up and can hardly move at all but once i start to get mobile it eases off, cannot start steroids until after my next op and then ido not think i will be able to take lodotra being that i have no stomach guess thetime release will not work, i do not bother the doctor with this as so many otherthings going on but perhaps you will know the answer     for lodotra, this was so good for me   because taking it at night i had no pain in the morning. Thank you so much for your advice in the past, like a friend i have never met.x

Edit button - there isn't one! Even I end up with errors - and you can imagine how I feel about that!

So pleased to see you back on the forum Vanessa - and to hear you have got through this last 7 months.

Your answer to PMR will almost certainly be depot injections under the circumstances. If you go to this post

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and scroll down, just below the "Bristol paper" you will find a link to the "2015 Recommendations for the Management of Polymyalgia Rheumatica - a EULAR/ACR collaboration".

In Recommendation 5 you will find the discussion about using intramuscular methylprednisolone. There is a lady on one of the forums who cannot take oral pred of any sort so is managed with injections very well - even when she had a flare of what was almost certainly GCA. They give some information about it there so show it to your doctor. Of course, as it is a depot injection it is always there - so morning shouldn't be a problem.

We're all friends here Vanessa - because we all know at least some of what you go through. Mercifully though most of us haven't had cancer to face up to as well. 

Vanessa

Get some VSL#3 (450million good bugs in every little packet) expensive, but well worth the money  - your gut needs good bacteria fast  - I know I had major problems after surgery and the Consultant recommended it but if in UK, not available on NHS.

It is made not many miles from Eileen in Italy.

Well that saves me hunting around  - we should email Alan. and add to his already extensive work load. 

I have asked repeatedly for an edit button - they have a problem with allowing us to change what we wrote. I suggested one that lasts an hour or two - still no go...

Could it be a "preview" before actual posting? 

So sorry Anhaga, but we are so small we just do not have the resources to even think about a "preview".

Eileen co authored it, patients contributed with "Tips and Tricks".

The outlay was £3000 and luckily two people donated that amount which enabled us to print and produce.  We don't make a profit on it  - as £5 incl postage and packaging in the UK. The postage has just gone up and we decided that this run we will take the small hit.  Overseas we charge £4.50 and then weight the package at the Post Office and advise the purchased exactly what the total cost will be - to let them make a decision on whether to go ahead with the purchase.

I hope this explanation helps you to understand, that we have 7 volunteers all 'silver surfers, no paid employees and families, grandchildren, one a full time carer.  So we operate on a shoe string.

You can visit the website and see the cover  pmr gca north east support.

Sorry for misunderstanding - I was referring to the problems with getting an edit function on the Patient site.  Suggested a preview, which allows us to see everything exactly as it will appear when posted, but isn't actually posted so we have a chance to catch things our eyes miss when simply hitting reply right after typing.

Anhaga: I suggested that too - no go yet! Same with the posts that are captured automatically for moderation. They can be long and have other info that is lost unless you have thought to copy it before pressing the post button. I can't see why they can't come with a warning the first time - if you don't identify what isn't acceptable it can be captured the second time. 

thank you so much for that information,              am not sure if that will work as i have no stomach, so vit pills have to be chewable, please let me know thank you so much.

I fell about laughing at the misunderstanding. 

Vanessa - they aren't vit pills, they are probiotics which will colonise your remaining gut and are possible to take even for you although I would check with your consultant 

"How do I take VSL#3?

Just sprinkle on any cold food or in a non-fizzy cold drink such as a cordial"

Just google VSL#3 and look at their FAQs (box saying questions customers most frequently ask).

lodger - watch out or you'll mangle your other foot!

Interesting that we can have such useful discussion under the heading "this is not a discussion" and based on a couple of amazing goofups/misunderstandings, revealing the 5 and later 7 people that are at the core of this extremely useful forum for people like me (beginner...)

We are nothing if not resourceful and imaginative people...

When you hit that send button, you will never be surprised again at what emerges.   Life is exciting with curved balls coming at you from all ends.   The trick is, either 'catch' or 'duck'

Who Me!!!!!!!!!!!!!!

 

You...