My mum was diagnosed with antisynthetase syndrome with ILD 2 years ago. She was initially put on corticosteroids and an intravenous immune suppressing drug (which I can't remember the name of but it made her hair fall out). This drug got her out of immediate danger and she was taken off steroids about 8 months ago and put on 5 methotrexate/mycophenalate pills each day. All seemed fairly stable but I just went on a 2 month documentary shoot to Antarctica and have returned to find she has lost a significant amount of weight, is so weak she can't get out of the bath and had a bowel cancer scare. A CT of her bowel was clear and the doc has put her back on cortico steroids and is now trying rituximab (2 x a year injections). I'm really shocked by the weightloss and all the drug changing has shaken my confidence in the treatment plan.
I would love to hear from anyone who can advise me on Rituximab and it's effectiveness. Is this drug more powerful than methotrexate? (is it sign that the illness is beating her or are they just trying a newly available/better drug?).
Should I push for more investigation into the weight loss or does this just sound like badly managed anti-synthetase syndrome?
Thank you so much for taking the time to read this and any advice would be so gratefully received. My mum is too scared to investigate her disease herself so relies on me to know what is going on..... and I'm currently feeling a bit confused and unsure.
Olive
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antarcticadventurer
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Sorry to hear your Mum is not doing well, does sound like she has had a flare because the reduction of treatment. But any sudden weight loss should be investigated, particularly because the first few years after diagnosis there is a increased risk of cancer, and treatments used can also increase the risk.
Rituximab is a far more suitable treatment plan combined with Mycophenolate then Methotrexate/Mycophenolate, as normally Methotrexate is avoided with lung disease due to a slight risk of lung complications. Please be mindful Rituximab does take a few months to be effective, so she will need to be on a high steroid dose in the meantime.
Thank you so much Jo. This is really reassuring and it's amazing to finally find someone who understands the drug options available. Do you think Rituximab + mycophenolate is the best treatment plan or should we push for something else (a friend has rheumatoid arthritis and I remember he had to go through several cheaper types of drugs before be qualified for the latest/best one on the NHS. Thanks again!
Yes, Rituximab and Mycophenolate have been shown in studies to be effective option; Tacrolimus could also be another treatment option to add in at a later date if needed.
Your friend experience of needing to try the cheaper medication options first is very common; but in the case where you have lung disease a Myositis specialist would be far more likely use Cyclophosphamide or Rituximab first to stop lung damage in it's tracks. You could consider a second option with a Myositis specialist if you feel your Mum is not improving, there is a list on the pinned post.
The Myositis Association in the USA have a new website and have Antisynthetase Syndrome info, it's a good source of reliable information as overseen by Myositis specialists. Myositis UK are in the process of developing a new website.
I was diagnosed 9 years ago and after failed treatments including methatrexate I was trialled on Rituximab. Now I'm virtually symptom free. Life changing drug for me.
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