Polymyositis Help please share with me thankyou

I was diagnosed with polymyositis over a year ago now on my 3rd.immu and still muscle wasting and pain my rheumatologist has retired out of the blue and not a couple of rheumatologist who don't know much about me and is getting bing me 5 months before she sees me again she also got a lot of my case wrong a new consultant rheumatologist has been advertised twice and still nobody can I ask to go to another area to be treated even if I have to travel more I'm back to where I was over a year ago and feeling so let down because it's so rare I live in Scotland we don't that I know of have any groups in Scotland help sorry for the rant I just would like some help that's a bit more positive even my GP says he can diagnose it but doesn't really know much about it I look forward to hearing from some of you myositis people with some positivity as ve had so many let downs with this disease I want todo the best I can to help myself but when your left for 5 months before seeing someone you just keep on wasting muscle etc

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  • Hi Pineapple. I don't know that much about getting good care for Polymyositis in Scotland I'm afraid although I've looked it up because some of my symptoms and antibodies point to Scleroderma and Polymyositis.

    I think I'm right in saying that the disease closest to yours, apart from Dermomyositis of course, is Scleroderma?

    If this is right then you might find help from rheumatology at the Ninewells, Dundee where they have the second biggest clinic in the U.K for Scleroderma I believe. This may not be helpful if you are already with this hospital. But I thought it worth mentioning just in case.

  • Hi twitchy toes thankyou I an at nine wells Dundee I will see what information I can get kind regards

  • Oh dear I was hoping the Ninewells rheumatology service would be good for you. I have found the only way forward with rare diseases is to be very proactive on lots of fronts. I'm also with Ninewells for rheumatology and neurology but have hassled in writing and queried things I've been told so am a bit of a thorn in their side! I think this is the only way to get them to take us seriously as our diseases warrant.

    So you could perhaps phone the consultant's secretary or the rheumy appointments desk and say you'll take a cancellation or explain that you feel you are deteriorating and think five or six months is far too long to wait and are concerned that damage may occur in the meantime as your drugs aren't working.

    Get them on your side by being polite but forceful about how isolated you feel with this rare disease and how you feel you aren't getting enough clinical input or support from them.

    If they don't know this then they won't snap into action for you as services are so hard pressed these days - so you probably need to spell it out! Best of luck. X

  • Hi again twitchtoes I've done that as last week I was at the end of my tether like you i politely phoned the sec and one of the rheumatologist a lady doc got back to me within half hour she was so good and put my mind at ease and also said the wait for the next appt was to give the new drug and myself time however she has put me forward for another EMG muscle test to check on them again and is considering starting at beginning as where I was this time a year ago and really ill as she. Thanks my past rheumatologist has got some things wrong I was shocked to hear her say that about another professional but we will go with it for now kind regards

  • That is rather shocking but it happened to me too in a different neighbouring hospital. I think I know who you are seeing as I see her next too unless there are several women rheumatologists. They are good at phoning back which is reassuring at least. I am same boat waiting for a new medication to take effect so seen by her for first time end of April. The man who rediagnosed me has recently retired.

    I've been seeing a specialist registrar who just spent most of my consultation going over old ground so I wasn't impressed. But I wrote to him querying what he said in his clinical letter to me. He totally contradicted what he said to me in my appointment. He did phone me sounding defensive but I stayed firm and explained why I wasn't happy with this. So he's now referred me to the Scleroderma clinic and to his colleague, the woman rheumatology consultant, for a second opinion now.

  • Well done you we are so on the same wave length the last rheumatologist I saw was weeks ago and like you got most of it wrong thank goodness I keep a diary and had to put her right a few times nicely of course and she is making me wait till end of April even though I'm in awful pain etc the one who phoned me back was more on the ball and fires from it he hip I like that I too have been on new immu don't help not much left to try as ve been so ill with hem all yes I'm sure the rheumatologist that retired is the same one. Had a manor very few words and I have to say did make a few mistakes with me good luck in April ky16 next rega de

  • Oh yes I know exactly what you mean about being left to cope with pain and fear of things deteriorating irepairably.

    I was diagnosed originally with RA in a different hospital in a different part of Scotland. I was put on Methotrexate and Hydroxichloraquine and then not seen again for nine months! Unfortnately I had severe tolerance problems/ allergies to all four disease modifying drugs. Then a rheumy from Fife undiagnosed me and took me off steroids saying that I didn't have a connective tissue disease at all a year ago - and also cast doubt on his Scottish colleague's original diagnosis which I thought rather off!

    So I moved on and the newly retired chap, my no.3 rheum, found that, once off all drugs, my ANA had turned clear positive and ordered a lip biopsy and bingo - a very positive result for Sjogren's from this procedure!

    So I'm grateful that he put in the detective work at least and confirmed what I'd strongly suspected all along, but then once he'd left it was left to a senior rheum registrar to decide on treatments I should try and he had failed to do his homework on me at all. I had to explain each drug reaction to him all over again which took up most of the consultation

    In some ways his lack of thoroughness has been to my advantage because I'm on a fifth Immunesuppressant treatment by default. If he had read the neuro's letter first then I'd never have got onto it and I'm at least tolerating it well.

    We also had a shoot from the hip phone conversation a few weeks ago too because he knew I had caught him on the hop but he tried to lay the responsibility on me and that was a big mistake on his part! But at least he took my ideas and frankness quite well over the phone.

    My next apt is with a young woman consultant in late April when I'll get a non invasive test to rule out Scleroderma finally and discuss/ decide whether or not the Mycophenolate is working. If not I won't be offered anything else apparently so that's when I may have to fight my corner.

    Also, if the limb weakness/ fatigue worsens further, I will have to push the very assertive neuro for more investigations as she has so far just second guessed everything, and has relied on lumbar puncture test results from two years ago and my positive lip biopsy result rather than looking for hard evidence to support her "presumed" diagnoses. It comes to something when the patient is more evidence-based than their doctors! X

  • Please check The web site of TMA.org or The myositis association where you will find useful info

  • Hi i am diagnosed with myostis a couple of months ago...i do know how you feel as far as see muscle just waste away...my ck which is the blood test they take every 2 weeks to see if the count is going down was 9000...it should not be over 200...that 1 indication that something is terribly wrong...another thing is my muscles in my thighs, shoulders, arms, & even my throat muscled are weakening because of this disease...it effects every muscle in your body, so its very important that you see a Rheumatologist as soon as possible. .right now im getting infusion called globulin immune injection...its only been a month..but nothing else is working so hope is all i have...i pray that you find a doctor that will take you sooner..because once you loose the use of the muscle its hard to gain it back if its too weak...i also do therapy for my thighs, throat...it keeps it moving...keep moving..don't give up🙏🙏🙏💪💪..

  • Hi queenie thankyou nothing has worked for me either thankyou for your input I appreciate it kind regards

  • Ps queenie I don't know if my area covers the area infusion you get may I ask what country you live in if you decline to answer that it's ok it's just ve never heard of it being done in Scotland please don't say if you don't want to I understand good wishes

  • This might be what's known as IViG infusion -which you can get in Ninewells I believe - or Aberdeen otherwise - but you need to meet the criteria as it's a very scarce and expensive infusion derived from blood born plasma and it probably comes under neurology rather than rheumatology. Defintely worth asking about.

  • We seem to have questions the a bit n common I also see a neurology doc at ninewells as I suffer RBD parasomnia I was with him today and he said that the two things could have a link and if we can medicate one and it works the other should follow so that was something I found out I didn't know I know I gave my retired rheumatologist a hard time with questions although he was a man of very few words or eye contact with answers but I will keep on finding out what I can keep in touch with anything that might help many thanks

  • Oh that's interesting. My neurologist is a woman but I think our rheumatologist must have been same - although I only met him the once. Another person on this community was with him too so that's at least three of us.

    He seemed quite straightforward but put the fear of God into me about possible organ/ brain involvement and cancer - which turned out to be unnecessary and meant that lots of more mundane but rubbish stuff went uninvestigated/ unanswered/ unmentioned. I wish these people could all meet our eye properly and listen to us a bit more as we know our bodies best and live with this stuff day in day out!

    Feel free to PM me anytime if you want to chat about things in more depth.

    Twitchy x

  • Hi TT I'm sure you mentioned your back at nine wells in April would you mind telling me your date and time asi go back in April too I have just wrote to my new rheumatologist by e- mail and got an answer the next day as I queried the length of time for my Urgent EMG appointmen as when I phoned up her secetery she said I was on the waitimg list

    But not yet on

    the urgent appointments list that was 6 weeks ago.... and her e-mail to me was a bit patronising so suffer on we go just trying to help each other or we would go crazy with pain meds etc and don't know what's right or wrong for us hope your coping with this devil of a disease kind wishes x

  • I will pm you with this info

  • That's exactly what it its called Twitchytoes. Ivig infusion...my rheumatologist recommended it to me, since i had turned down the belysta the first time...im going on my 2 dose next week...im not sure if its working tho...i just hope..do you know anything more about this med?

  • Im not sure if my message went through, I'm in the USA...

  • Sorry Queen - it's still the early hours here in UK!

    The reason I know about IViG is because, while waiting for nerve conduction studies and a lumbar puncture two years ago this month - I was sitting in the Day room of a neuro ward with three people all having their regular IViG infusions for demylenating inflammatory neuropathies. We all chatted and they explained their diseases to me. I learned that IViG is a very scarce resource. It isn't a drug as such - it is a plasma derived product i.e. pure human plasma given to people with confirmed immune deficiencies and certain immune mediated neuropathies. I believe it's more commonly available in the US than under the NHS. For instance those with confirmed small fibre neuropathy of Sjogrens are elligible for it in the US whereas they aren't in the U.K.

    This is a great shame for people like me because it has a good track record for effectiveness at slowing or reversing the damage to the small nerve fibres - although it can occasionally lead to conditions such as viral meningitis - but that's very rare I think.

    All the people who were having it on that day had been having infusions for years and were doing well - actually far better than me and their original symptoms were also much less severe/ painful. I hope this helps.

  • Hi Pineapple,

    Sorry to hear about your dilemma with getting some proper answers. I was diagnosed with polymyositis and scleroderma just over 2 years ago and was very seriously ill for about 18 months. I was told that early treatment is the key to treating this disease as it can take over the body so quickly.

    Keep pushing for some answers, physio plays a big part in getting the muscles working, as I was told if you don't use it you'll lose it. I was in a wheelchair for over a year but with positive thinking and doing my own physio, I managed to get out of the wheelchair. I can now manage very short walks. I have checkups regularly and monthly blood and urine tests.

    Try and remain positive and push for medical help. This is a great site and everyone is so helpful. Good to keep a diary of events of how you feel.

    Good luck:)

  • Hi mew53 thankyou for your reply and so well done to you for doing physio I have just started and also your positive outlook and getting out the wheelchair 😊

  • Hi Pineapple can I recommend a new book called The Autoimmune Fix by Tom O'Bryan. This excellent book explains all about autoimmune diseases, how we get them, how to live with them or how to reverse the condition completely. I hope this helps.

  • Hi Jackie Cheshire I wii look into that thankyou

  • Hi Pineapple01,

    I would urge caution about any book that claims it can explain all autoimmune diseases and how to reverse them completely. At present there is no cure for lupus. Management through treatment, diet and lifestyle can all help to improve outcomes, but this sounds like a fraud.

  • I saw a clinical trail looking for patients with both of your diagnosis.

    Rheumatic Diseases Centre

    CSB

    Hope Hospital

    Stott Lane

    Salford

    M6 8HD

    United Kingdom

    -

    paul.new@srft.nhs.uk

  • Thankyou for that info I will try and get n touch see what I can find out only problem I live in Scotland but if it's for real there maybe a way round it

  • Hi to all my friends n this great site. I had my 4 th EMG muscle test this morning and my doctor ding the test said it has settled down a bit I have been on. Mycofenolate for nearly 3months now and ithasbeen. The best one for me so far I'm now at 1000mg. Morn 1000mg. In evening bloods are looking can't believe it fingers crossed The only thing that's bothering me is te doctor doing the test asked me if my eyelids closed over at times but I said I don't really understand what you mean then she said it's ok just forget about that but it's now got me wondering what she meant as the test was my legs thighs and arms if any of you have a clue I'd be interested to. Hear your views on it m still baffelled..... kind wishes to you all x

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