Why we need to share experiences with PMR/GCA

Hi Everyone

Especially PMRpro; Merk & Lyndyloo2

Fellow Sufferers--It is good to be able to share experiences on our journey through PMR/GCA and learn from others who have trod the path before us. If only these were collated for the purpose of research into this debilitating illness or further training for rheumatologists/specialists to enable them to see beyond guidelines/ typical sufferers into the world we inhabit of atypical/ sometimes downright unique presentation of symptoms.

"Polymyalgic syndrome" ( thanks PMRpro) seems much more wide-ranging than the guidlines would suggest. Some people present with shoulders/arms problems; some with hips/legs problems; some are unfortunate to be afflicted by both and yet more have the complication of GCA to contend with. Some are affected by 'Classic' morning stiffness that tapers off during the day; some have pains throughout the day; yet more have 'good days' and 'bad days'. Some have PMR and are not affected by GCA but others are-- necessitating higher levels of treatment. Many also have pre-existing conditions which can exacerbate PMR or be exacerbated by it.

My personal experience is that pred treats PMR but causes a drastic increase in blood sugar levels meaning a move to insulin to treat my T2 diabetes and also causes water retention which aggravates my leg lymphoedema resulting in an increase to level 2 compression hosiery to contain the additional swelling. It has also caused muscle weakness which has made moving my "lymph" legs very difficult.

Prednisolone:-- currently the main treatment for PMR/GCA but bringing with it a whole host of side-effects (most of which I seem to have unfortunately experienced). I am not decrying 'pred' for without it I would undoubtedly have had eyesight problems but without this forum there is little or no informed support available in advance; moreso if, like me, you insist on working shifts as normal (meaning appoinments coinciding with both my schedule and the GP/rheumy).

Rheumatologists:- tasks seem to be to reduce the level of pred as quickly as possible (sometimes within guidelines) to see if the body has any PMR flares at which point the specialist takes a little more interest. If only our input as collected experiences could have an influence on the specialists insight into the disease.

I've gone on long enough now so i'll close with a question-- Iritis (Uveitis); GCA and leg lymphoedema have all affected my left side. As they are all auto-immune conditions is there a connection?

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  • I think this is something which can be done to a certain extent on here by introducing 'categories' . I can do this, it is a new development but obviously it will take some time to collate all past postings. How many of you think this is a good idea?

  • Thanks, Polkadotcom.

  • Hi polkadot

    Not sure quite what to think really as there is already a 'Browse by category' section listed to the right of this page. Plus there are three quite busy PMRGCA forums where people share their experiences, in depth in many cases.

    Violetsnowdrop has commented: "If only our input as collected experiences could have an influence on the specialists insight into the disease." Now that would need the specialists to get involved in reading our posts!!! My rheumy made it clear that GPs are being kept up-to-date via document circulation and that now it's up to us, the patients, to educate our GPs!!

  • violetsnowdrop what an interesting post . You describe what other sufferers are going through so well and what Prednisolone does to our bodies yet we need it to get through our day . I have been trying to get over a flare caused by a Virus for 2 weeks and today is yet another bad day. The sun is shining yet I am too scared to go out because of feeling Giddy/ nauseous and my pain level is sky high . I have had wonderful support from this Forum while I have been ill particularly from Polkadotcom ..Celtic and Pats .. I don't know what to do .I am waiting for a pain clinic to get in touch .I keep hoping for a few better days to try Acupuncture.. I would love my life back pre PMR and to be able to laugh and smile again and its reading other posts and knowing that others are trying to beat this awful condition and I prefer the name " Polymyalgic Syndrome " best wishes to you. Trish 29

  • Hiya violetsnowdrop,

    Sorry to spoil your "leftist" theory, although my undiagnosed PMR certainly was more pronounced in my left shoulder etc (which is why the old frozen shoulder was suspected), and it is also confirmed that I have osteoarthritis in my left shoulder and knee, which would concur with your theory, unfortunately the dreaded GCA got my right eye!

    Mind I never did like conforming to the normal (as my late hubby would agree) so I guess that's about right.

    However, it would be interesting to find out if there is any pattern, everything else about these illnesses seems to be atypical! Well according to the medicos!

    As you say, thank goodness for this forum. DorsetLady

  • Some of this is already available on another forum where there is a section with posts (some mine) that other people have found particularly useful, together with a FAQs section. It doesn't seem to make much difference - I post similar responses to questions every few weeks - people don't know how to explore a forum that is new to them and find what is already there so they simply ask their question. For me it is quicker to answer their question than try to point them to another place - I don't know what the others think. When I started there was the Patient.co.uk forum and nothing else. I had read every single PMR/GCA post before I ever commented - I doubt anyone could do that now. The other forum associated with the northeast group has over 50,000 posts on it now, although it is easy to see topics many of the "conversations" are just that - and like any conversation stray from the topic and may have dozens of posts on a thread. There is also a lot of this sort of information on the Northeast PMR GCA UK support group website where it is clearly presented and has patients' stories too.

    I was discussing the concept of what is "needed" with a research rheumatologist a few weeks ago and I commented then that a book is needed - one that is to some extent aimed at patients but with parallel references to back up what is in it for their doctors. Because believe me - doctors will not take any notice of a book for patients (like Kate's) and only rarely will listen to a patient saying "but this is what it says on the forum..." unless you can hand over a reference for a publication that backs up the claim. GPs don't even read the stuff the consultants send out updating ideas! They don't have time to read everything that arrives on their desk. And many consultants think they know all about disease A - and will tell the patient that in no uncertain terms.

    Many doctors are scared of "Dr Google" because they believe it makes patients demand totally unscientific stuff and forums are often ranked alongside that. One of the things the rheumy I mentioned and I also discussed was an "expert patient course" which is something that is available in other disorders, including diabetes. But a survey has found that the patients then struggle when they meet healthcare professionals who feel their nose has been put out of joint and dismiss the "expert" patient's knowledge and still do what they think is right - it maybe for many patients, but not for this particular one.

    One lady in the northeast visits the local medical school a few times a year and tells medical students about PMR and GCA from our point of view. It seems to be bearing fruit - and she was looking for other people who would do something similar.

    There are patterns yes - but one of the problems that arises is that these are autoimmune disorders. Once you have one you are more likely to get another than if you didn't have the first one (if you see what I mean). I like to look at autoimmune disease as a set of signs and symptoms on a long shelf, each one quite similar to the ones on either side but very different from the ones further away. Various symptoms are handed out to you - and then you go to the doctor and get a diagnosis that is based on the set of symptoms you have and that is what is treated. Then someone chucks something from further along the shelf at you - and bingo! You have another illness all of a sudden! Or you are atypical.

    What I keep pointing out to doctors (and patients if it comes to that) is that at least 50% of patients are going to be "atypical". And there will always be about 2 or 3 percent at each end of their lovely bell-shaped curve of statistics who are TOTALLY out of synch. That doesn't mean they don't have the illness though.

  • 6 years ago, there was only Patients Experience Forum as PMRpro has said.

    There were no Charities but there were two support groups, East Anglia and Scotland.

    Now we have this forum, pmrandgca-forumup.co.uk, facebook, twitter and a myriad of others and Patients experience is still going strong.

    There are now 3 registered charities, PMR GCA uk, PMR GCA Scotland and PMR&GCA uk North East Support.

    Each of those have a website, which are kept up to date and a wealth of information and also there is a Website for PMRGCA Northwest.

    There are also 14 Support Groups which meet regularly.

    All this because 25 people met in London on 14 March 2008 together with Professor B Dasgutpa and decided that PMR & GCA needed the profile raised and people needed help.

    They determined the order of priorities would be, Support for Patients and Research.

    Research has increased, read about it on the websites.

    A Fast-track system for suspected GCA cases is in the process of being implemented so people's sight can be saved. We want to achieve a situation where no-one loses sight, either partially or totally because of GCA.

    All the forgoing has been achieved by patients who are all unpaid volunteers and 99.9% are people with PMR, GCA or both and some dedicated Medical people.

    There are over 600 people who post on here, over 600 who post on pmrandgca.forumup.co.uk and also those who post on Pat's Experience.

    There is one person in the whole of the UK who is in paid employment and that is only for 18 hours per week and on a one year contract.

    We can make more progress if every sufferer joined up and paid the small fee that is charged to join one or more of the organisations. I look at what has been achieved in 6 years with people giving freely of their time and in some cases their own money and I am astounded.

    Unfortunately money makes the world go round and without it we can only go slowly.

    Therefore if you want faster progress sign up, volunteer your help.

    Each website gives details of how to join.

    Yes, I am a volunteer, and I had GCA.

  • Hello Violetsnowdrop,

    Thank you for a very interesting post, food for thought indeed.

    I am glad to be able to share my experience with PMR on this journey, if only to provide someone else who suffers with some support. We are not alone.

    I can empathise about diabetes and muscle weakness. Steroid induced diabetes T2 didn't improve at all in the 14 months I was off pred, however, I'm better informed this time and in my opinion am managing my carbohydrate intake better. Only time will tell.

    PMRpro makes an extremely good point about consultants, who after all are the trained professionals. I can only say that the rheumatologist who I last consulted was willing to listen to me and to help me. My experience was a positive one, not everyone has this.

    I would be willing to volunteer my time and to get more involved, health permitting. I don't live in the UK and have no current NHS experience or medical knowledge.

    Sambucca; you are completely correct about joining in the groups, helping fund research and of course educating ourselves and others. Knowledge is power. I'm reading as much as I can find out about this insidious disease. It won't cure me, but, maybe will help me improve the quality of my life and others.

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