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      13.03.2013 20:48
      Very helpful



      chronic disease which is rare and therefore hard to find information on.

      Dermatomyositis is a rare autoimmune disease whereby the body attacks itself, in this case mainly large muscles and the skin, though it can also attack the lung and throat muscles. While the cause is unknown it is felt that it can be triggered by a viral infection.

      On my 50th birthday I developed gastroenteritis (norovirus) it only lasted 1 day but I never really recovered from it, I had no energy and no appetite. About 2 weeks later I developed a rash, intensely itchy on my left knee which, being me, I decided was a post viral rash and could wait. As it was coming up to Christmas I ignored it until the 28th. Meanwhile the itch had spread to my chest, back and legs and it was purple in colour! My GP asked questions about muscle strength which at the time was ok, I was told it was Urticaria which I knew it wasn't (I was a nurse). A few days later I found I was struggling to wash my hair, I couldn't keep my arms up for the length of time required, I was struggling to get out of my chair, I had pains in my thighs but these were spasmodic and changed places, making me feel it was all in my head. Within a week I could not 'remember' how to kneel down instead I had to pull myself down using whatever furniture was available, then I couldn't manage to get downstairs but could climb stairs, at this point I really thought I was going mad. I visited a friend in the dermatology clinic who took one look and advised me to get my GP to refer me to a dermatologist. I got an appointment about a week later, usually gauntlet of blood tests, a skin biopsy and a muscle electro conductive test (not nice!) The skin directly below my nails was very red and this alongside the other tests lead to a diagnosis of Dermatomyositis. I was started on medium dose Steroids (30mgs) and these improved the muscles but not the skin or the itch. The Dermatologist wanted to start Azioprine or Metheltrexate (both oral chemotherapy drugs) but as there is a link between Dermatomyositis and cancer he felt a CT scan was needed. Surprisingly this showed an Ovarian cancer of which I had no symptoms! I will try and stick to the Dermatomyositis in an attempt not to make it too complex.
      My Steroids have been up and down ever since; the lowest I have managed is 4mgs. I have a great variety of anti histamines which provide psychological help if nothing else. They gave me an anti malarial drug which is supposed to work well for the skin but I was allergic to it, yes you guessed right, total body rash with itch! I had a course of Immunoglobulin therapy (given intravenously over 5 days) this worked brilliantly but unfortunately only lasted 6 weeks and really wasn't worth it, because it showed me how restricted my life had become and I really struggled as the effect wore of within a week. My oncologist has discussed Azathioprine/Methotrexate with the dermatologist as it would appear I can take these, at least while I'm not on chemotherapy. So hopefully these will start within the next few weeks, if these give less than satisfactory results the next suggestion is the Immunoglobulin therapy but with monthly top ups.
      At present my skin has improved (40mgs steroids now cutting down) I have had 'ulcers' body wide, my scalp flakes like there is no tomorrow and my hair is thinning, my thighs, knees, elbows and arms are now permanently purple which indicates a chronic disease process. Muscle wise I can still walk admittedly slowly and not far, I have trouble getting out of bed and find it very hard to roll over in bed. I cannot kneel, well I can, but I can't get up again so I don't try anymore. I find it difficult to get in/out of a car due to the height of the sill. I try and do as much as I can as I feel the muscles will only deteriorate if not used, my recover time is also extended.
      The itch is horrendous and has been so since 2009. Despite my complex history and that fact that the cancer will kill me (eventually) all my symptoms come from the Dermatomyositis despite this I remain upbeat, my attitude is that they are others much worse off than me


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        04.10.2006 15:54
        Very helpful



        You really want to give it all in, I just think a weaker person would want to end it all

        Polymyositis (PM) is a weakness and degeneration of the muscles and is a very rare chronic connective tissue disease which can show different signs and symptoms from person to person. It is thought to be an autoimmune disease which can continue to attack the body's own normal and healthy tissues after fighting infections and viruses that have caused swelling, weakness, degeneration and inflammation to the muscles. It is believed that some medicines may trigger autoantibodies and white blood cells in the blood to attack the muscles after a viral infection and leads to degeneration of the muscle. Diagnosis takes several months with plenty of tests, which include physical examinations, biopsies, electromyography and many more. Treatment can vary depending on the individual but Steroids will be given in high doses to begin with and you can be on these for a long time if not indefinitely. If you have Polymyositis the chances of your children being affected is very small.

        It all started for me in June 2004 with an itch. I had an itchy chest that would not go away with constant scratching I soon had a very sore and red chest area. The only relief was to soothe the area with a cloth soaked in iced water. The whole experience lasted approximately 5 hours and I would not of wished this on my enemy. As soon as possible I got to see my Doctor who said I had a severe reaction to something and gave me some cream. Two days later it came back just as bad as the first time and I applied the cream which was useless so it was back to the iced cloth. This itch I had for a whole year and lasted for between three and five days out of every ten days, it appeared mainly on the chest and abdomen, arms, thighs and head. During the year I got to see the consultant at the Dermatology department and she put me through a thorough M.O.T. test. This included a Biopsy done under local anaesthesia, a CT scan, an ultrasound, (which revealed an Aortic Aneurysm), and lots of blood tests. I was put on Steroids and given new creams to try but the itch stayed, the latest cream I was given did help slightly it is called Menthol .25% in Aqueous. The condition, after doing all the tests, was found to be Chronic Urticaria.

        Urticaria is like Hives or Nettlerash and can last a long time from months up to decades and Doctors don't know the cause of it. Histamine in the skin is just one of the substances that cause Urticaria, so Antihistamine tablets form the main part of my treatment and I don't think they help at all. I have had many sleepless nights as the itching normally rears its ugly head after five in the evening and can last for up to four or five days. You hide yourself away from everyone and cover the area with cream that you have to wipe off after fifteen minutes because the cream has got hot from your skin and this also irritates you. You really want to give it all in, I just think a weaker person would want to end it all. Your social life is none existent and my stress levels reach the maximum at times. The Steroids do help you with the stress but after being on them for a while the side effects from them are more detrimental to my health and the Doctor will have to stop them eventually.

        From October 2004 my muscles seemed to be getting weaker and I was getting a lot of chest infections, normal day to day tasks were getting more tiring. I was on a special diet of not eating food with additives and colourants, which meant cutting out a lot of food that I would normally eat. My itching was getting less frequent which was a big relief I was referred to the Respiratory Consultant who did lots more tests which resulted in the diagnosis of Pulmonary Fibrosis, so back to the Steroids with the addition of Antibiotics. Another problem that a cause is not known, I did smoke for thirty five years but I was told this was not the cause. The muscle weakness was put down to the stresses and strains of the Urticaria and the lung problems as well as the high doses of drugs that I was on.

        We had a holiday to Egypt booked over a year before all of this started and I was determined to go, and go we did in May 2005. I never itched once during our two weeks there, must of been the hot weather, but I got extremely weak and found it hard to get out of bed in the mornings. I also was finding swallowing difficult and would constantly swallow things, (mainly liquid), down the wrong way, this had been most embarrassing at times. My very worried wife had to help dress me and walk with me to the restaurant for meals, this was getting more and more exhausting as the days went on. We were thinking of going home early but decided to stay. When we got to the airport I had to have a wheelchair all the way to the plane and when we landed in England. Luckily I had another appointment with the Respiratory Consultant five days after we got back and he admitted me to hospital immediately.

        I was very weak by now and was losing weight even though my appetite was still good, I had lost two and a half stone in three months leading up to being admitted. I was back on a very high dose of Steroids which I had through a drip. Lots more tests had to be done these included blood tests and one of theses is called the Creatine Phosphokinase Test or CK Test. This checks the levels of enzymes in the blood, most of the CK in the body exists in the muscle so a rise in CK in the blood suggests muscle damage. My CK level was at a staggering 6000, for a healthy adult the CK level in the blood, (normal range), is 22 to 198 U/L (units per litre). Another blood test picked up high blood sugar so I now have Diabetes this was caused by the Steroids. Myositis was suggested, this is simply muscle inflammation but more tests needed to be done first. An electromyogram (EMG) was a test that I had that measures the activities of the muscle by inserting a small metal needle into the muscle and records impulses. Recordings are made when the muscle is resting and contracting, this is repeated on several parts of the muscle. My muscle biopsy, which was extremely painful, was sent to London and they were then certain that I had Polymyositis.

        I spent four weeks in hospital in a six bed Rheumatology ward with my bed next to the window, I used to sit by my bed daily and people came in the ward and said how well I looked. The very deep tan that I had got in Egypt made me look healthier, if only they new how I really felt. They decided to put me on a drug called Cyclophosphamide, used in chemotherapy, and gave me it by drip. This drug is very powerful and it is used in a wide variety of cancers, it shuts down my immune system to help speed up the recovery of the muscles but leaves me wide open to infections and nothing to fight them off. So I then had to have the Flu and Pneumovax injections. Some side effects include decreased production of blood cells by the bone marrow, inflammation of the bladder causing bleeding and can also give you hair loss. This drug with the Steroids seemed to help and my CK level started to come down. I still found it hard to swallow properly because my throat muscles had wasted away but with practice I was ok.

        Back home now but needing a wheelchair to go anywhere. My eyesight has really got a lot worse now and I can't climb our stairs, I'm not able to raise one foot higher than five inches, and I need help standing up and getting dressed. I did need help getting in and out of the bath but now have an inflatable seat to assist me. I did get a bad attack of Pneumonia, even though I've had the Pneumovax jab, and had to spend another week in hospital. Although my CK is still on the way back to normal this will mean finding a happy medium with the drugs to keep my CK levels somewhere near to normal. Excercise has been a problem because of the Pulmonary Fibrosis, the more I excercise the more oxygen my muscles need which leaves me gasping for air and puts a lot of pressure on my lungs. If I went down on one knee I would not be able to get back up, that's how bad my muscles are. I've piled on the weight now because of the Steroids, how long I'm on these drugs for? well no one knows. Just got to get my Aneurysm sorted out then I can stop worrying.

        If anyone is interested or affected by Myositis or Polymyositis try this link:-http://www.arc.org.uk/about_arth/booklets/6009/6009.htm

        Useful addresses
        The Arthritis Research Campaign (arc)
        PO Box 177, Chesterfield
        Derbyshire S41 7TQ
        Phone: 0870 850 5000

        Arthritis Care
        18 Stephenson Way
        London NW1 2HD
        Phone: 020 7380 6500
        Helplines: 020 7380 6555 (10am-4pm Mon-Fri)
        or freephone: 0808 800 4050 (12pm-4pm Mon-Fri)

        Myositis Support Group
        146 Newtown Road
        Southampton SO19 9HR
        Phone: 02380 449708 (9am-3pm Mon-Fri and out-of-hours answerphone)


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