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Lupus Myositis

Just been told by my Rheumatologists that I have Lupus Myositis and I will need to have a muscle biopsy on Friday and some other tests, then its back on the steroids bah!

I didn’t initially noticed that something was wrong but of late I have found getting up, setting down, doing my hair and sometimes even rolling over in bed painful has anyone else experienced Lupus Myositis and did your medication help?

3 Replies

Hi, back in January the rheumatologist diagnosed me with lupus and myositis.....however, since then has said that it is more lupus. I do have the difficulties you mentioned though they have got easier since being on the placquenil and more so on the methotrexate. I still find getting out of chairs difficult and rolling over in bed though. In the beginning getting out of the bath was difficult, raising my hands above my heads etc etc. I haven't had a biopsy though and I do find that the immunesuppressants have definitely helped. It would appear that my left leg is always weaker. I do try to swim on the weeks that I can. In answer to your question though the meds have helped in this department though I wonder whether the problem is still there and is just being controlled. Good luck with your biopsy though by the way. xx


Cheers for your response

When the doctor told me i the first thing i thought is "God am i going to feel like this for ever?"


Me too and I googled every thing to do with it. Mine was more polymyositis and I think myositis means muscle weakness which fits with your description. I still do get weakness....eg during a flare up, bending, getting out of chairs etc but not to the same extent. I think I got a bit frightened too at the time and thought that I had to try and work through this. I found swimming helped to strengthen things. I can see my muscle on my thighs are wasting though as the tops of my arms are too. I found that I kept wanting to try and work with it so I did arm exercises and swimming. I was worried when they first mentioned this to me at my appointment but honestly the meds and exercise have helped. You reminded me of how it first was for me. I do sometimes feel like an old lady when getting up after sitting down and have to do so regularly to stop myself from stiffening up. For me it's certainly responded to treatment and exercise. Hope this helps .


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