Evening all it might be the pred affecting my brain but here goes.i have been taking in the posts today tragic&disgracefull.

[daveD]

that people are put through this.I was wondering if any one had know how as to starting an e-petition going. I am thinking with all the groups in the UK & family.& friends we could bring this disease to the attention of the powers that be in the NHS & MPs. ???

[venezia1]

No knowledge whatsoever, I'm afraid, except as a sufferer, but it's a great idea, and I'll definitely sign up.

After nearly five years I'm still astonished by the attitude of rheumatology consultants, who seem to expect one to maintain heavenly calm in the face of horrendous pain, don't explain that you have to become your own doctor, and don't expect to see you more than once or twice a year. I am fortunate in my GP but she can't be an expert in everything.

Hope you get some positive replies!

venezia1

[Annodomini]

It would be good to see resources put into research and treatment but equally good if "they" could be persuaded to listen to the accumulated experience of people like US!

[PMRpro Ambassador in reply to Annodomini]

See my other reply too - but they are listening to patients. There are research groups all over Europe who are embarking on research - and a group of patients are involved in an advisory capacity. I was "at" a video conference this week.

[PMRpro Ambassador]

GCA in particular has already been the subject of a question in parliament. Members of the northeast support group and of the national charity are already working together with both MPs and the NHS to get things improved. I, together with several others, are patient representatives on research groups. But the mills of god and the NHS and all that...

There is no real alternative to pred for management - and there won't be until they can identify a cause - a difficult and long winded process. It's a bit like the Malaysian plane - as someone said looking not for the needle but the haystack first of all. There is a glimmer of hope for GCA in the most recent basic research - some cells have been found in GCA and another arteritis and if that proves to be right they may be a pointer to develop another drug. It may also be that PMR is more closely related to GCA that they have previously thought. But that is years away, drug development takes at least 10-15 years and a LOT of money.

It doesn't matter how many e-petitions you do - the doctors will still carry on in their own sweet way. There are some outstanding consultants who do understand - and there are arrogant ones who think they know it all and won't listen to anyone else. Likewise there are some terrific GPs who will help more than consultants. But it is the same for most illnesses where there isn't a clear treatment path. "I can't cure you - don't bother me with trivial aspects. Go away and take this pill..." It is up to you to develop a good relationship with your GP and to make sure you know what's what. I have to say, I had one excellent GP in the northeast who happily wrote the prescription that the arrogant disinterested consultant wouldn't. Her colleagues were less on the ball. But my GP here is amazing. But this isn't the NHS with all it's financial constraints - it's state medicine but not free at point of receipt for many things.

You have to bear in mind that PMR, in particular, does not kill or maim permanently. Nor does it progress like rheumatoid arthritis. It is a disease with no real markers that they can see or measure and it only happens in older patients, mainly women (3 times as many as men), many of whom are no longer working so of little financial interest. That will change as we are expected to work to 70 of course! And as they understand it DOES happen in younger people.

However, you wouldn't believe how much it has changed in the last 7 or so years. Five women "met" online on another forum and went on to form support groups, set up a website from one of the groups and also both the northeast and the national charities and their forums, now there are 3. Before that there was a discussion forum on the Patient UK website where they met. Not much else at all.

I'm not dissing your idea Dave - I thought you'd like to know how far we've already come.

[BromleyPen]

Thank you PMRpro for your very full response to Dave's suggestion.

I expect many forum members are already members of the charity PMRGCAuk - pmrgcauk.com. If not can I recommend to all that you join up to support its work straight away? As a menber you will receive a quarterly newsletter so always be up to date with the latest information.

The Trustees work hard to help everyone with PMR and GCA. For example the PMR and GCA guidelines for the British Society of Rheumatologists and internationally recognised guidelines for PMR were changed recently as a result of the work of the PMRGCAuk team and two pieces of research have been started as a direct result of the charity's work.

Setting up an e-petition could also work but the Charity already has open lines of communication with the best rheumatologists, research establishments and politicians who care. With our support, as PMRGCAuk is more recognised, more resources should be put into finding out the causes and improving the treatments of both illnesses.

There are 14 support groups round the country pmrgcauk.com/groups/ If there isn't one near you why not try to meet up with someone else not too far from you for a chat - sharing the problem is so helpful.

I met up with two forum members 18 months ago and now we have a group running for North Kent with 40 on the mailing list and about 20 attending meetings each quarter. Members have shared information about their good and bad experiences with local doctors and rheumatologists, what is available locally, diet and exercise and so much more.

[daveD]

I can not fault the time, effort & information got from volunteers + fellow suffers. along with the pred and guidance from volunteers i have managed to cut& trim lawns and kick the ball about with the young ones,Time to relax now.I have joined and donated to PMRGCAuk. it seems to me that all the information and news on research is targeted at those that have the illness, I just wonder if more could be done to inform others perhaps through the media.I just got a blank look when i asked for a Blue steroid card.the practice manager had never heard of pmr.Sorry but like most men i go in sometimes with out engaging Brain box. PLEASE keep up the Good Work and thank you ALL. DAVE.

[PMRpro Ambassador in reply to daveD]

Don't waste your time with the practice for a steroid card or anything much about medications except the prescription! Ask your pharmacy - the pharmacist spent 7 years learning just about drugs. The doctor may have done a couple of lectures a week for 7 months (though unlikely to been that much) and the other staff none at all.

[cliveM in reply to PMRpro]

Most MD are not well informed with PMR and treatment or Meds needed.

That is why we need Rhumies

[PHildreth in reply to daveD]

Dave

PMR&GCAUK North East Support have recently issued all our members with a steroid alert card and a medical record book. Email us on [e-mail] and we will arrange ro send you one

[daveD in reply to PHildreth]

PHildreth. thanks for that,I did manage to get one eventually.A small piece of card which after just a few weeks is looking more frayed around the edges than myself.I am prepared to pay for decent one. what would we do with out these FORUMS. once again Thank You Dave.foot note i hope i sent you a Email.

[zorroaster]

I saw my GP, who has been brilliant, on Friday. She said that she only sees about one case of PMR a year, so perhaps 12 cases in 12 years. As a result she always refers to the rheumatologist at the hospital, who has also been great, as my GP knows she is unlikely to be totally up to date. I suspect some GPs may see even fewer cases which must make it difficult to diagnose and treat people. I hadn't realised that PMR is not very common, I assumed that more people would be seeing GPs with it. A forum like this is therefore very useful for a relatively uncommon diagnosis until understanding of PMR increases.

[PMRpro Ambassador in reply to zorroaster]

PMR is a bit more common than that I think - it is GCA that is a real rare disease. PMR is actually the most common inflammatory rheumatic disease in over 50s. You are also very lucky in having a good consultant - in the UK I saw 2 different ones a few years apart. One diagnosed osteoarthritis "I can feel it" and noone else has ever found any signs. The other wanted it to be anything but PMR - I don't think was glamorous enough for him - and wouldn't even listen to the report of the pain and stiffness being almost gone in 6 hours after taking 15mg of pred. A different GP at the practice to my usual one was great though luckily.

Here in northern Italy the rheumy recognised it immediately and was good - except he was more interested in practising his English! My GP worked in rheumatology before turning into a GP - and she is WONDERFUL!

[yevrah]

mmmmm i cant even get to see a consultant, beginning to think every body got there ears switched off

[daveD]

I had a revue with my Dr this week i asked how many patients he was treating with pred,not much of a reply just to say most of them were on Low dosage,so i assume they are being treated for other long term problems ie asthma,not pmr or gca.I am more&more relying on information from this forum for my strange journey , No one else seems to know or care.All the best for your journey . DAVE

[daveD]

SORRY about last post it was meant as reply to yevrah.take care. Dave

[angelone2]

Good idea count me in if you can get it going. It's about time PMR is recognised by the authorities.