Maybe a silly question

Hi,

Im starting steroids next week and was reading up about PMR. What is not clear to me is what the condition actually is. I know its inflamtion, is that of the veins?, also why does the condition not show on scans like some conditions do? Another member told me that it is not a disease but a result of somthing else. Could that spmething else me an exsisting condition such as thyroid disease?

Maybe the answers to these questions are very obvious and im missing the point.

Thanks Chistine

8 Replies

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  • Hi Yorkshiregirl, have you been diagnosed with PMR? I was just wondering why you were waiting until next week to start taking steroids. In my case I could not wait to start the tablets just to stop the awful pain.

    PMR is an auto immune condition when the immune system goes rogue and decides to attack rather than protect the body. The steroids act as an immuno suppressant which reduces the action of the immune system so it has its wings clipped. This reduces the inflammation that has been caused in the body by the PMR.

    It would be great if PMR could be diagnosed with a scan, but like many things, colds and flu even, this is not possible. In fact there is no diagnosis as such, it is found by discounting everything else it could be, based on the symptoms.

    No one really knows why we get it, although various suggestions have been made such as stress.

  • Hi,

    Iv not had a formal diagnosis as such. It was during a visit to me endo that he susspected i had PMR and wrote to my GP asking her to try me on steroids. I was not able to get an appointment to see my GP until next wednesday. I really dont know if i have this condition or not. The pain i have can be intense and sometimes not quite as bad. I expereince stiffness and weakness most of the time and get flu-like symptoms without getting flu.

    As well as having thyroid disease and crohns disease my pain was put down to fibro and OA and the exhaustion i feel down to M.E.

    Maybe i will know alot more once i start on the steroids.

    Thanks Christine

  • I had excruciating pain in my shoulders and thighs. I could hardly move. I am not sure it varied that much it was always horrendous. I also had the fluey symptoms. I assume you had blood tests, normally ESR and CRP are included, which can show up possible inflammation. If you have got PMR the steroids should have a miraculous affect pretty quickly, in hours sometimes. I hope it all goes well.

  • No questions are "silly". I entered my steroid journey from such a point of ignorance I am now in retrospect quite shocked at myself. Like Piglette I couldn't wait to take my first dose - drove from doctor's office, to pharmacy, and home to take the pills! It was only about six or seven weeks later that I had the sense to go online and seek more information and support than just the straightforward medical descriptions of the disease. This forum and the one on Patient have been like a lifeline to me. So please let us know how you get on! Best wishes.

  • I will keep in touch and let you know how the steoids go...

    Christine

  • PMR is not the disease itself - it is the name given to the symptoms of an underlying autoimmune disorder that causes the body's immune system not to recognise the body as "self" and so it attacks the cells in the tissues as if they were invading viruses or bacteria, causing damage, inflammation and, as a result, pain and stiffness. Which disease you are said to have depends on which tissues are being damaged - joints, blood vessels, muscles, nerves and so on. Autoimmune disorders include rheumatoid arthritis, MS, lupus, PMR and GCA - and Type 1 diabetes and some thyroid disorders too and there are many others. When someone already has one autoimmune disorder it is more likely they may develop another - so you can have 2 or 3 (if you are really unlucky!).

    In PMR and GCA the damage is almost certainly to the walls of blood vessels so they thicken and restrict the blood flow through them. When the tissues they should be supplying with blood don't get enough oxygen and other nutrients it causes pain and they don't work as well as they should. In GCA it is actually possible to take samples of the arteries and see giant cells (hence the name) - which if they get too many and cause too much swelling can stop the blood flow altogether and when that happens to the blood supply to the optic nerve it can damage the nerve so much it dies and is unable to transmit the signals from the retina in the eye to the brain - you become blind.

    It is now being thought that the damage in PMR is in what is called the microcirculation: the very very tiny blood vessels that are a bit like the twigs at the end of the branches of a tree and which supply oxygen and nutrients right into the middle of organs and muscles in the body. The inflammation causes pain and stiffness - and we all know what that feels like. Some research being done in Spain and sponsored by one of the PMRGCAUK charities is looking at the tiny arteries that supply the outside of the larger artery walls - it is possible that that is where the damage occurs in GCA and could also be the link between PMR and GCA.

    GCA does show up on scans - but they are very expensive, involve radiation and only recently available widely, even so, not all hospitals have the equipment and it tends to be used for patients with very serious illnesses including cancer. You will have heard of CT and MRI scans - and these special scans are a version of of them called PET scans: Positron Emission Tomography. A radioactive substance called a tracer is injected into a vein and after some time it has reached everywhere your blood vessels go to. Then the CT or MRI is done. The radioactive tracer is taken up more by inflamed cells than normal cells so when the images taken during the scan are examined you can see the inflammation, "lit up like a Christmas tree" some people describe it as.

    If these scans are done in patients with "just" PMR it is often found that the larger arteries supplying certain areas of the body are inflamed. The brachial artery which supplies the arms is often involved causing shoulder and upper arm pain - and it can be identified under the armpit using ultrasound which is enough to see there is something going on there. However, not very many people can do this technique which was developed and trialled in GCA with the temporal artery to see if it could replace the somewhat unreliable biopsy that is usually used. It could and would save the discomfort of a biopsy - but the NHS doesn't have the money to train technicians and run the service to do it in every hospital. Same old same old story...

  • Thanks for that, you have explained it in such a way that i can follow.

    Christine

  • What a great explanation, Pro. I thought I knew a lot about PMR but now I have learnt a great deal more. I would also recommend Yorkshiregirl44 to get hold of Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide, by Kate Gilbert, available from Amazon either as an e-book or in print.

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