Thank you all

Hi Lodger

I dont know if I have PMR I do have RA .I have been on pred for a lot of years . My rhuemy just keeps telling me everythng I have is caused by the RA but I am not hapy with that  have had RA for 40 yrs x

There being a pulse at the temporal artery doesn't mean you don't have GCA - it just would mean that the temporal artery was not yet badly affected, it isn't the only blood vessel that can be affected.

I realise you will have been with this rheumy for some time - but I think if it were me I would want a second opinion.

Lodger - Joyce just asked on her first thread what other people had as symptoms with no details.

Thanks Eileen that is what I thought . I am going to ask my GP on Thursday when I go

RA can turn into PMR  which is much more painful.  I have had RA for more than 10 years which could be controlled with Plaquenil. Just in the last 3 years I started having pain which was different from RA flares.  I was diagnosed by my GP (not rheumy) having PMR last year in September because of bilateral shoulder and back pain.

Hi all; yep me too - I would ask for a second opinion.   I thankfully don't have GCA/PMR,  but my physio and rheumy both asked me the same questions re "if I had ...the symptoms"  that Joyce mentioned, only in this last week, to make SURE that I didn't have GCA, and have still given me path slip to ensure that I DON'T...if mine can be over-cautious, then I think Joyce needs to find some-one who will listen and take the step to at least "check with a pathology/arterial biopsy".....Bron

Hi Ann

My sed rate is low at this moment .I do get blurred vision but have seen the optician and she said my eyes were fine

Joyce

I have very bad blurred vision at times...last xmas It was so bad my doctor uppped my pred to 20mg, and sent me to emergency eye clinic...they couldn`t find anything wrong....I have now been sent to rheumy (down to 15mg now) and been told it is the pred doing ti. I have since split the dose,. which has eased it for me....hope this helps...Linda.

Hi Janet

I have recently had an ultra sound scan of my abnomin and they said all was fine also had a CT scan of my lungs because my SATS were going low havent had the results yet

I am pleased they found out what your problem was Janet and it wasnt cancer

Thanks for the kind thoughts Joyce.

It was a relief when the dr. came and said they hadn't found any cancer - I was thrilled for about 2 minutes when it suddenly hit me that if it wasn't cancer what was it - the dr. looked at me and said "but.... we have found something." The "something" was GCA - which I had never heard of - they gave me 50 or 60 mg prednislone and the next day I thought I was on my way to recovery - oh dear, I have learnt alot since then!

A PET scan is the one where you have the "radio active"  contrast scan - it shows any "active" areas and as far as I am aware it is usually used in connection with checking for cancer.

My scan showed that my arteries were full of inflammation.

Your problems have made me remember back to after I had been diagnosed - I saw several different rheumies in the beginning (hospital problems!!) and I had to start over every time as the first question was always "how are you, any pain in your head?"  so  I had to explain that I didn't have temporal arteritis - it has made me realise how little is known about GCA.

I do hope that they can figure out what is wrong with you soon, not having a diagnosis isn't nice - you can't start getting better until you know what you are fighting.

Wouldn't it be wonderful if they did PET/CT on all of us - and found out how many of us have GCA anywhere except our temporal artery! I had a sore scalp for about 3 weeks and typical jaw pain and then it simply disappeared - the GCA is anywhere else but where they want it to be. I do at least have a rheumy here who says the same and happily accepts that though!

I am sure that there must be more folk around with GCA than is recognised.

If the recognised "best" way to make the diagnosis is by taking a temporal biopsy - well they would never have found my GCA. "Never" is maybe slightly exaggerated - it was obvious something was wrong and it took a week in hospital before I had the PET scan.

Makes you think though doesn't it. I realise that a PET scan is more than likely more costly and time consuming than a biopsy but think of all the time and suffering they could save by getting the diagnosis right from the beginning!

Ours is not to wonder why .....

Most of us are dx'd with PMR I suspect and then are the ones who are difficult to manage with symptoms flaring at higher pred doses - because it isn't "just" PMR that is being managed but GCA and more resistent.

It isn't quite as simple as cost - they start at about £900 for the smallest area done - but also access to the equipment. They're fairly new and not that many machines/trained personnel I suspect. But given the waiting list for biopsies - and I'll bet all things considered the (wo)man-hours are less for PET/CT than a biopsy.

The trouble is, when a TAB is positive it is 100% accurate. And historically, because that was all they could get at and look at they thought it was just there. Re-configuring years and years of teaching is a hard job! For me too - it was all about headache and sore temples. They simply didn't ask the right questions and I didn't know then what I know now. Thigh and bicep claudication and stuff...

But I think we are getting there. Lay-people we may be in the support groups but there are a few of us with loud voices who are prepared to use them. And as I said somewhere else - it is very exciting.

"Exciting" !? I think that maybe one would have to be of the medical proffession to use that term Eileen!!

I could think of less flattering ways to describe it!

I can see though that the more information that emerges the more interesting or exciting it is, and thank heavens for "the loud voices" - I am also a loud voice when I know what I am talking about!

As for the PET scan - there is an awful lot of waiting - from arriving and starting the proccess it takes about an hour before the actual scan which then takes aprox half hour - and as you so rightly state few machines/staff - so much so that I remarked on the few patients that they could see per day.

I just can't help thinking that if that is the answer to getting to the right diagnosis faster then it must mean that money/hospital time would be saved to use on other things - patients would get through the system faster.

It is always easy to solve problems for NHS or anything else really when you are just focussing on one thing...!! I had better leave it to the proffessionals!

 

Given the status 8 years ago and when you look at what has been achieved in that time, started by a group of ladies with PMR and GCA who met on this forum and none of whom have medical qualifications - sorry, it is exciting. If it weren't, there wouldn't be 2 other forums and support groups all over the UK, we wouldn't still be here volunteering and there would be far less patient input to the research.

Without the sort of imaging that PET gives, you cannot know the extent of the inflammation in many patients with GCA and that is why there has been the massive gap between PMR at one end of the scale and temporal arteritis at the other. The PET-CT scanner was named by TIME magazine as invention of the year in 2000 - very, very recent.

That is very impressive - had no idea that you were responsible for so much - hats off to you and the group of ladies that started this.

I for one have learnt so much from this forum - you must be very pleased to see that your support group reaches so far and wide helping and informing people from all over the world.

THANKYOU!!!

Thank you for the history lesson with the forum. As a newbie, I prefer to read more than try to contribute. All book suggestions are so welcome. So far I have confidence in my head rheumy who did his medical training among Scandinavians and saw much GCA. Thanks to all for the time spent helping us all. Ann11195

I wasn't part of the original group - I just tagged on at the end! But I do a fair bit alongside the NE group, which was the first in England, Scotland already had one.

Oh no you did not "tag along at the end".

You came along when we were launching our DVD called 'You are Not Alone" at the Centre of Life in Newcastle on 12 May 2010.   You made a long journey after hearing it publicised on the local Radio and made valuable contributions at question time to the medics present, so much so that we invited you to lunch with us and we have never, ever regretted it.

Before somewhere else corrects us, East Anglia were the first support group in England. Scotland was already operating as a registered Scottish Charity.

We operated as a support group from  March 2008 and then in Oct 2010 we became a registered charity.

Of the original five who met on this website, four of us are still heavily involved and others have since come along.  We are always looking for volunteers - so if anyone out there wants to help in any way they can - please don't hesitate, we  and our sister charities and support groups can still use more hlep.

We are all still looking to set-up support groups throughout the UK and raise the profile of both PMR and GCA. 

Without volunteers we cannot make progress and every little bit of help makes the load lighter for those of us who are now 9 years older.

 

Would you mind telling me where in East Anglia...if it`s still going....Thank You

If you go to this thread

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

you will find a link to "PMR GCAuk - a National Organisation which covers England, Wales & Northern Ireland"

along with several other useful links. 

Go to the Homepage and on the left hand side you will see a blue list with "Groups" third from the bottom. Click on that and it brings up all the existing groups, including the East Anglia one with contact details and the next meeting in Needham Market on Thursday 16th July.

There are also groups in Peterborough and Cambridge.

Thank you very much...