Necrotising Myositis and leg pain

[Institches]

Hi I am new to this forum. I was diagnosed with Necrotising Myositis in December 2019 and since then have been taking steroids and Methotrexate. I get intense pins and needles in my legs and pains that can be anything from aches, local burning sensations and cramping pains. I wonder if anyone else experiences this.

[Behrooz]

HiI was diagnosed with NAM three years ago

and after that I had burning sensation and pain in my legs

My illness is overlap with SLE

When I am sitting in squat position with knee bend it is difficult to stand up

I was on steroid on AZA but i had bleeding in end stream of urine

and i cut off AZA so now i am on ivig

[Eddie1969]

Hi I have just been diagnosed with this too. Still having tests but not on any medication at the moment. I have pins and needles in my legs at night and sometimes during the day. I also have aches and pain in my forearms. Sometimes I have a dry cough and feel tired, and odd aches and pains around my body. I had myocarditis previously three times over two years and I have now been told I have Necrotising Myositis.

Did the pain start suddenly or over a short time. I have had forearm pain and swelling for about a year on and off before being referred to rheumatologist.

How are you now.

[Institches in reply to Eddie1969]

Hi EddieI have been diagnosed as having Auto immune mediated necrotising myositis. My legs and arms are affected , I lost all the strength. I couldn't lift my arms, get out of a chair or climb the stairs and couldn't turn over in bed. The pains started later. I didn't have any medication whilst the tests were ongoing so as not to interfere with the results.

The tests I had, not necessarily in this order, were: CT -twice - MRI, EGM, Muscle biopsy (from my thigh), Echo cardiogram, Lung Function test, Lots of Blood tests including sophisticated antibody tests to distinguish the type of myositis I have, and physiotherapy. I am being managed by a Rheumatologist but have also seen a neurologist. But after the tests and diagnosis I was on a large (40mg/day) Steroid dose and had three intravenous doses too. My Ck level had reached 14000 and the steroids brought it down rapidly and for the last few months I have been reducing the dose whilst taking Methotrexate as well.. The pains are weird one minute they are in my left calf and the next my right thigh and mostly when I am sitting . Like you I get the intense pins and needles mostly at night and weirdly when I cough, sneeze or yawn! I usually sit with my feet raised to help with the swelling in my legs and feet which I put down to the steroids. Unfortunately I have all the other side effects of taking steroids too, weight gain, disturbed sleep, swollen face and eye problems. I am hoping when I get clear of the steroids things may return to normal. My CK level is within the normal range now that's after 18 months. I have been trying to exercise and try to walk each day as this helps maintain the remaining muscle strength, presently on some good days I can mange a couple of miles and I live in the Dales, so it is quite hilly. Its not easy I have good and bad days and I get very tired but hey I have plenty of sewing and watched the French Open Tennis and Wimbledon starts next week.

I hope you get through the tests and onto some medication soon.

All the best

[Eddie1969 in reply to Institches]

Thank you for your reply. I am early day into all of this at the moment, I am able to do everyday stuff still, as I think it has been picked up early. Each day is different at the moment and odd aches all over.

I am going to wait and see what comes back as eventually will have had the same tests as yourself.

I think I have probably had these aches and pains for a while but just put it down to a busy life and getting older.

I notice things more since I have been diagnosed. But not sure if that is the progression of what is going on or I am more aware.

Thanks again and take care. By the way, I have taken up crochet, which takes my mind of everything. Thanks again.

[Mustgetaroundtoit]

Hi. So sorry to hear about your issues. My diagnosis at the same time as yours was Polymiositis. I am also on the same treatment (down from high dose steroids to 4mg currently and weekly injection of Methotrexate ). I too am having pain issues. Trying tens machine, CoCodamol, various excercises.. but not much really helps.🙁