Gochujan

[Gochujan]

My GP discovered that I had elevated liver enzyme 7800 April 23 and sent me an ambulance to be thoroughly checked and went through CT San, MRI etc, seen by Hepatologist and Rheumatologist who suspected Myositis and after muscle biopsy on my thigh, she confirmed I have Mhositis.

Since then, I have been on Prednisolone (started 40mg and nos on 4mg and fishing with 1mg by the end of October), Methotrexate (once a week) and Folic acid (once a week).

Had fist infusion at the hospital November 23 and second one in in November this year and last one in 2025. Hopefully this will be end of all the treatment (depends on the test result)

I see my Consultant Rheumatologist regularly and countless blood test and the test result indicate "normal" but I sill very week and on a bad day, I struggle to walk, although Rheumatologist told me that she will make me up and running!?

i am 79 years old and being an unpaid carer for my 87 year old disable husband with dementia.and he needs 24/7 care!

[Roleypet]

Hi, that sounds like quite an ordeal. I do hope that things improve for you, exercise is definitely the way forward. If it doesn’t improve things, it will stop things getting worse. Exercise builds up muscle to replace what is being destroyed.

[Gochujan in reply to Roleypet]

Many thanks for your reply and encouraging suggestion. I seem to have polymyositis myself and I tried to do physiotherapy at home and although it's not getting worse and improved slightly and have good days and bad days, especially I get very tired towards the end of the day. I must say finding out the fact the myositis is not curable is very depressing! I believed what my consultant Rheumatologist said the she wii get me up and running!

[Roleypet in reply to Gochujan]

I have had polymyositis for 16 years and at one point could hardly walk and kept falling. Exercises improved my walking and I stopped falling. However recently my walking has deteriorated, if I didn’t exercise on alternate days I wouldn’t be able to walk at all. I am 85 so age probably accounts for the problem. I also have good and bad days. Today is a bad day, I have only just got dressed and have no energy to do the planting I had planned.

[Jo-Goode Administrator in reply to Gochujan]

Please wait for your doctor to approve before you commence an exercise plan, the recommended guidance is to wait at least 4 weeks after commencing steroid treatment & that your CK has lowered sufficiently. understandingmyositis.org/d...

[Gochujan in reply to Jo-Goode]

Many thanks for your kind advice. I started taking 40mg Prednisolone on 21/7/23 and Methotrexate 10mg on 5/9/23 once a week and Folic Acid once a week and now my CK level is down to 38 but still my leg feels weak and have pins and needles on my feet and due to have scan next week. Consultant Rheumatologist told me all my blood test results are normal! The steroid is down to 4mg a day and will be reduced to 1mg and hopefully finish by the end of October. Also had my first Zoledronate infusion on 23/11/23 and due to have second one this November and third and the last one (hopefully) November 2025!