New looking for advice pls

Hi I'm new on here but on Thyroid UK for Hashimotos & Lupus UK as I'm under Rheumatology for a positive ANA and connective tissue disease.

After a recent MRI at my appt today it has shown muscle inflammation in my thighs as I suspected due to struggling getting up stairs etc. In addition to hydroxy and gabapentin I'm now on Mycophenolate. I've also previously had a weak positive in June 16 for myositis.

Can anyone help what exactly I could be treated for? Can myositis be a symptom of SLE? Does anyone have any similar experiences and been on Mycophenolate?

Any advice would be much appreciated thank you

12 Replies

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  • Hi MissFG,

    Mycophenolate is a treatment that is used quite often for Myositis and on the whole is well tolerated, it does however take up to 3 months to be fully effective so I would be concerned that your muscle function could decline further in the meantime. Prednisolone is usually used to bridge the gap and dose lowered when symptoms have improved.

    I don't quite understand what you mean by a weak positive for Myositis, was it for a muscle biopsy?

    Myositis is a separate condition to Lupus, although many have other auto immune overlaps (myself included) bloods can be sent off for antibody testing and if you are positive for a known antibody it can help with disease progression path and types of treatment that are more likely to help.

    There are a number of specialist Myositis clinics around the UK and it can be helpful to be treated by doctors who are more familiar with the condition. If you let me know where you are I can advise of the nearest one.

    Regards,

    Jo

  • Thanks Jo!

    I've tested positive for Lupus a year ago and began treatment in march. I had numerous blood test by my Endo in June 16 following treatment for Hashimotos.

    One blood test I noticed was also abnormal "weak positive" I googled and it was for myositis. It's only recently my Rheumy decided to do an MRI on my pelvis and thighs and it's shown up inflammation.

    So does this mean I have Hashimotos, Lupus & myositis? I'm scared how I'm going to manage and control three chronic diseases.

    My Rheumy says I'm strong which I think my muscles overall are good. However she said the MRI showed it was affecting one muscle group in my thighs which I think is the quads as that's the painful area. Now I'm even more aware of it and was thinking it was maybe fibromyalgia but thought it was too painful.

    Can once the treatment becomes effective my muscles repair themselves? If the Mycophenolate isn't tolerated and I need to try an alternative in 6 weeks then that could mean even longer for my immune system to be suppressed and therefore is still attacking my body. I've already been left this long and do feel I've not been taken seriously. I'm just lucky she did order an MRI or god knows how long it could have taken.

    Can my GP refer me to a specialist clinic or does it have to be my Rheumy? And thank you for replying I've been so upset I don't think anyone understands how serious I think this is and I've no idea what the long term prognosis could be for me?

  • It's possible you have Myositis and not Lupus and the hydroxychloroquine has slowed some of the symptoms. Normally you would have a muscle biopsy and EMG to confirm diagnosis before starting further treatment.

    I would try not to worry about possible multiple conditions, but focus on dealing with things a day at a time. I have so many conditions I forget some of them when asked to list them ha ha

    You can ask for a second opinion via your GP, just let me know where you live.

    Once treatment is working you can improve muscle function with an exercise program myositis.org/storage/docume...

    If you are on facebook I'm admin the largest UK forum and it is far more active than here. facebook.com/groups/2432609...

  • I've emailed Dr Hector Chinoy as his name has come up a few times when I've been researching and I'm in Sheffield. I'm going to see my GP tomorrow to see if I can get referred to a specialist, I have a very good supportive GP so know they'll try to help.

    If I could just myositis not Lupus would I still have a positive ANA?

    I have been exercising up until recently is it ok to continue or could I be causing more damage / inflammation? I can only do weights as I have no stamina.

    Would it also be worth seeing a Physio?

    Many thanks & sorry for all the questions x

  • If you could recommend anyone in the Sheffield area for a second opinion or myositis specialist I'd really appts hate it thanks

  • Dr Hector Chinoy in Manchester hectorchinoy.co.uk/index.php

  • I've already emailed him yesterday thanks

  • Aren't you under Sheffield Hallamshire hospital if you live in Sheffield,the Neurologists and Rheumatologists there are pretty good my specialist is called Professor Hadjivassiliou and I was diagnosed with Dermatomyositis almost 6years ago.I live in Chesterfield

  • I'm Rotherham but have always been under hallamshire as I requested this when I was diagnosed with Hashimotos.

    My Rheumy Dr Kuet is just treating me as "text book", provides me with no information not even which myositis I have as she says it doesn't matter as they're all treated the same. I haven't seen a neurologist and haven't a clue what to expect or who I should be seeing. My bloods also don't show much up which I understand can happen with myositis.

    Any advice would be appreciated. I have finally got a referral to Dr Chinoy in December but again I'm not sure what to expect from that appt.

  • Can I ask why your under neurology and who you see in rheumatology please

  • I have seen dr. Kuet too when I go to the joint clinic,and in my case she seems really good and the reason I see a neurologist is because i was diagnosed with Dermatomyositis almost six years ago after many tests.I'm sorry but I haven't heard of Hashimotos so don't know what to suggest

  • So if I have myositis should I be under a neurologist?

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