medical evidence for anti-inflammatory diet/no steroids?

Dinah

At the outset of PMR/GCA, I also had a raised white cell count.

At the outset, I didn't have pain in my shoulders or arms either - that came later!

Pre-diagnosis, I also had "huge weight loss".

So be reassured and, as Eileen has said "Don't panic yet - in fact try not the panic at all (easier said than done I know), the stress of doing so will only make you hurt more.

Thank you both so much. I do feel reassured and am going to try not to stress about it. I feel a lot better today on the third day of steroids - a good 80% less stiff.

I did lose about a stone - but then it coincided with a period of huge stress (moving house, buyer dropping offer by £250,000 with hours of exchange after we had arranged removals and sold furniture!!), and I guess I just have been eating less with all the worry. But over the last few weeks I have become much more hungry - even without the steroids! - and am confident that the weight loss has stopped. And I'm probably not putting it back on again because I am eating so damned healthily!

Several things the doctor said made me think that she really wasn't up to speed with PMR - for instance that she was surprised the other doctor hadn't put me on a higher dose of pred when in fact he was following the guidelines for the 5 day test.

I know the excessive peeing is a worry as that can be a symptom of myeloma - but then I haven't got any bruising which I think would be expected. And I usually do wee a lot when I have something wrong with me - I always thought it was the body's way of getting rid of toxins...

Anyway, we'll see. Now I can't wait to officially join your club, who would have thought it!?

Dinah

"I know the excessive peeing is a worry".

I forgot you'd mentioned that in a previous post and I meant to reply. That was another thing I suffered from quite badly at the beginning and around the same time there was a post from a lady complaining of the same thing. At the time, I decided that as the bladder was a muscle, perhaps the inflammation got at that too! Well, it even got to the soles of my feet at one stage, so I suppose no muscle is safe and anything is possible.

A weight loss of ten pounds or so is very common - I wish I'd had THAT particular symptom! And the whole stress thing would have definitely contributed! Hmm - gazundering by 250K is a bit of a cheek. Mind you - never had a house worth over 250K anyway to find out! Just one that was worth just over that a few months before we put it on the market. By then, however, the market had collapsed - typical - and we ended up accepting a combined offer of a little terraced house along the road from our house plus the balance in money. Not so awful as we lived in it for several months while the NHS messed things up and delayed my husband's retirement plans and it is now let to a lovely tenant who thinks we are wonderful landlords and pays more than the same money would fetch anywhere else.

No - she doesn't sound up to speed with PMR. 15mg is the recommended starting dose for pred in PMR - a recent study showed that, in fact, 75% of patients respond to 12.5mg. It used to be higher, the current thought is that this isn't necessary and only adds to the cumulative pred dose - and the main aim is to keep you pain-free on the lowest dose possible. The northeast pmr gca support site has a link where you can get the guidelines for diagnosis and treatment of PMR and GCA - maybe you should download and print them or give her the link so she can update herself. And if you feel 80% better after 3 days - sounds to be a close relative of PMR!

There is, by the way, a big difference between having to empty your bladder because it is being irritable and because it is full to overflowing. The first is often the case in PMR - you have to keep going but you aren't actually passing a vast quantity of urine. You only know that if you measure it every time. And something called interstitial cystitis is not unusual in PMR. That's what causes the urgency and leakage lots of us are bothered with. Honestly - if I know this, why doesn't a GP think about it????????

Eileen

PS - it isn't pred brain or Alzheimers that has made me repeat things! I'm answering on 3 different threads (plus the other forum) and can't remember if I've already said something to you. So I put it in in case on the grounds once or twice too often is better than not saying it!! The more you know the better - even if it wasn't the question you asked.

Eileen

Thank you both so much AGAIN! (And yes, that's London prices for you, Eileen; ridiculous - and unfair - but very welcome for the pension...)

That makes me feel so much better about the weeing MrsO!

And in fact my son who is a doctor says they would have picked up high calcium levels in my blood if it were mm and that cord compression would be causing weakness all the time, not worse in the mornings....

I know, I know, why am I worrying when I have my own pocket doctor - but to me, of course, he is still just a little boy.....

OK then - what sort of doc is your little lad? I do hope you are educating him too! Since you have recently retired I assume he must be similar in age to my nurse and my paramedic ;-)

Yes, my SIL is in Farnborough Hants. Her enormous house is about the same size and worth about the same as our 3 tiddly things put together: a one bed flat in a well known fishing town on the Yorkshire coast, a terrace in Pity Me and our current residence half way up a mountain in northern Italy. I actually prefer our version ;-)

Eileen

He's a registrar in intensive care - and 28. And i will do my best to educate him! Though he is trying equally hard to stop me googling symptoms.... What he doesn't appreciate, though, is that if I wasnt doing that i would be searching the internet for a bride for him.

Northern Italy - how fabulous. Lucky you.

He's probably right in some ways - except if it is PMR you need the internet to get the knowledge to educate the doctors about it! And this forum and, to an even greater extent I think, the other one provide communities that understand where you are and who are able to and will help you stop panicking and have a laugh. However rough you feel.

I have a daughter going spare and looking - but he probably would prefer one a tiny bit younger and unencumbered by a ready made family. She's nearly 33 - given her recent experiences I don't quite get why she wants another bloke but there you are ;-)

Italy has become very expensive under Mr Monti - luckily OH still does consultancy with a research group in Innsbruck (only and hour and a half away) to top up the rubbish NHS pension (he hadn't been in the NHS very long and went early so lost a dollop of even that which he had). Keeps him occupied doing difficult sums as I describe it!

Eileen

Dinah

Send him to our website and get him to read it, then tell him to follow the link to pmrandgcaforumup.

Professor Bhaskar Dasgupta, started the National Charity and he is a world leader on GCA & PMR. He produces all the research documents for us and we now also have a Medical Advisory Committee at National Level.

The medics that help us are great, but patients experiences help us even more and take pressure of the NHS. They don't have time to listen to all our little queries and as patients we are reluctant to take up that time asking questions, That is why charities like ours and ARC etc offer support, meetings and helplines. That is why our friendly, helpful Consultants took the time out to give their services free of charge to make our DVD which educates patients. They understood exactly what we strive to do and knowledge is power.

It is also why some of us who are in remission still help others and push for research for cause, cure or friendlier medication is found. I never want anyone to go what I went through the first six months, till I found others who had gone through the same. .

Yes, some of the stuff on the internet is rubbish, but we try our best to keep our people aware, so when they come along and ask about crack diets and cures - we try to put them right.

Us oldies (not you - you are too young) are long in the tooth and not so easily taken in by gumpf.

Welcome to the club you never wanted to join and mat your journey with PMR be short.

Dinah

Are you still in London? A support group meets in Surrey (Chertsey).

Well I live mostly in Devon now, though we do have a flat in London. As soon as I know for definite that I have PMR I will look in to that - thank you!

A support group has been operating in the South West of England for some years, with meetings taking place somewhere between Wellington and Taunton. There was also mention some time ago of a first meeting taking place in South Devon and I can certainly find out more about that if you are diagnosed and interested at a later date. Meanwhile, I do hope you have settled happily in Devon - must be very pleasant after London!