GCA Experiences

You are so right about the use of the word "remission" - there are two definitions: one is drug induced and the other is natural. The charities are working hard to educate at all levels and the research group in Leeds is led by 2 consultants who are passionate about that. Things are improving, there is far more awareness than even 5 years ago. Patients participate in medical training, teaching medical students about our side of PMR and GCA, and this does appear to be bearing fruit in that often it is locums or trainee GPs who suspect or identify the illnesses. There is a need to extend this but it requires motivated and committed participation.  A research student is being supported by the NE support group who also have invested in education in the past. 

The greatest problem remains the combination of there being no definitive test for PMR/GCA and the reliance of a certain generation of doctors who trained just as laboratory tests were exploding onto the scene on sending away a blood sample. They struggle with the idea of "normal range", believing it is written in stone rather than covering only 95% of a population, forgetting the 2 1/2 % at each end in those little corners. 

But the "your pulses are fine" comment sounds as if someone was confusing VASCULITIS and VASCULAR DISEASE. Really NOT quite the same thing, although in the long term the first can lead to the second. 

In PMR the autoimmune disorder causes inflammation as the immune system attacks your body by mistake, thinking your own cells are invaders likes viruses and bacteria. This causes swelling and that is painful in itself, like an insect bite. In addition, if the blood vessels are affected the space in the middle where the blood flows along narrows, a bit like hard water bungs up the water pipes. This means less blood, and less oxygen gets to the tissue - which matter when you try to exercise and that causes pain.  Because of the inflammation you often get raised ESR and CRP. Pred is one of the most effective antiinflammatory drugs available and it works in PMR, very little else does although a few of the newer drugs appear to help some people. They are mega expensive though and some can have some very nasty side effects. Some of the latest research is suggesting HOW it works in PMR and GCA - pred affects white cells called neutrophils, neutrophils have been found in the areas affected by GCA inflammation, pred probably inactivates them somehow. Knowing this may make it possible to find drugs that target that more specifically.

In fibromyalgia for some reason your brain isn't able to process the pain signals it receives normally. Some researchers think that there is some tissue damage originally, like bruises or overworked muscles, that signal their pain but the brain has become very sensitive to it and magnifies how bad it is - I'm not saying you are imagining it or exaggerating what you feel, the brain is just getting too many signals and so what you feel is out of proportion to the damage. I have no idea why your consultant mentioned the spine as it has nothing to do with either PMR or fibro except all nerve signals to the brain go via the spine I suppose. Sensation and sight are the same in that sense - the eye receives the image in the form of light but it is the brain that interprets it just like the skin is in contact with the hot water but the brain works out what it is. Anyway - it is not inflammation in fibro and ESR and CRP are never raised. That is how your GP knew there was something else going on. Pred does nothing for fibro pain although there are some drugs that can help it.

In all these sort of diseases the symptoms may overlap - as you know ME and fibro and PMR have some things in common whilst also having things that are "their own". In some cases the diagnosis is made as "overlap syndrome" or "overlap connective tissue disorder" - an autoimmune disorder with symptoms of one or more recognised illnesses. That is what often makes diagnosis so difficult because while experts know about this it isn't part of the bedtime reading for the average GP and unless they have seen someone with this before they may not realise it can exist. Most practices are unlikely to see more than a couple of GCA cases over years, I know GPs who have seen 1 in a career of 30 years. Some of the disorders are classified as vasculitis, some as connective tissue disease (muscles, ligaments, tendons) and a rheumy may not recognise the vasculitis ones although a vasculitis specialist may recognise the rheumatic ones. The trouble is - there is a desperate shortage of vasculitis specialists and they are in only a few highly specialised centres. I know one patient who travels from Scotland to Cambridge to see her specialist. It isn't only the UK where it is so - it is a relatively new area. Unless you can go to the Mayo, Johns Hopkins or the Cleveland clinics in the USA the doctors often struggle just as much there too - and it costs you personally a lot of money when they get it not quite right.