necrotizing myopathy

i have this disease as well. was super weak in my legs. could barely do stairs. was put on dexamethasone and it helped a lot. not 100 %, but close.

Are you in England?

exact same with me. Stairs were super hard. are u in any pain? My back and legs hurt a lot of the time

Hello, I also have necrotizing myopathy since 2010, I have been on IV I G I'm also been on prednisones since that time I've got rituximab treatment that I am currently taking and it has dropped my CK level back to normal don't know if that would help for you or not?

Hello, I also have necrotizing myopathy and I have gone through basically everything that you said since 2010 right now I am on Rituximab IV treatment every three months and it's dropped my CK level down to normal. This might help you?

Hello - I am a 54 year old lady who has been diagnosed with NAM - Necrotising Autoimmune Myopathy with a positive SRP serotype, negative to statins. I have a medical background and so was able to recognise that I needed a neurologist experienced in movement and autoimmune disorders, so I found one and organised a GP to write a referral to Macquarie Neurology. My symptoms exacerbated over a 4 week period, from unusual fatigue walking to inability to climb stairs, inability to lift legs off bed independently or get into my finance's van. Thanks to the outstanding team at Macquarie Neurology in Sydney, I was started on a very aggressive treatment plan after: CT's, MRI's, angio, endo/colonoscopy (to rule out cancer), mammogram (same), bone scan, PET, plus every autoimmune marker known to man - they have an excellent baseline for my care. I was admitted for muscle biopsy which confirmed the diagnosis, and remained in hospital for 8 days, commenced Ivig (immunoglobulin), IV methylprednisolone, plus heparin (due to possible clotting from ivig), calcium and Vit D. Dismissed to home on oral methylprednisolone, oral methotrexate (steroid sparing agent), folic acid, Calcium + Vit D, Bactrim (for opportunistic infection secondary to suppressing the immune system), Adendronaten (Fossamax). In about 3 weeks I return to discuss my CK levels which at diagnosis were greater than 7500, and reduced in hospital in 3 days to 2250....if I do not show improvement, we will discuss treatment with Rituximab. One of the world expert's is assisting my team. I am at home, and struggle with stairs, and some daily living activities, but persist in using the muscles I have in gentle stretch and strength exercises so as not to get other medical problems, and help myself return to good health. I also take CoQ10, Krill oil, Multivitamin for women 50, triple joint strength formula (and have done for years). I have read every journal article on this disease and understand the biochemistry and cellular anatomy of what is going on, and I cannot stress enough - get yourself to a neurologist with a speciality in this area. Do not muck about with GP's other than in your general management. My GP and all 5 consultants all talk to each other (neurologist, rheumatologist, endocrinologist, - cardiologist and gastro - no longer needed. Good luck, but make sure you get the care and support you need! This is a potentially treatable disease.

Hello - did you have any side effects from the Rituximab? I may be starting this in 3 weeks, pending test results on current triple therapy. Thanks.

hi we are in australia try iv nutrients it depends on your gene testing that will determine your treatment BE VERY CAREFUL AS TO WHAT YOUR DOCTOR PRESCRIBES HAVE YOU BEEN ON STATIN .......././. WIFE HAS THE SAME

there are many people around thee world that have it HERE IN AUSTRALIA 20 REPORTED CASES FROM WESTERN AUSTRALIAN INSTITUTE OF NEURO SCIENCE

WIFE IS RECOVERING BUT NOT AT THE HANDS OF THE RAH HOSPITAL NB STATINS BLOCK PATHWAYS IN BODY THESE NEED TO BE OPENED TO ALLOW NUTRIENTS TO HEAL AFFECTED AREAS HMTHFR GENE HETROZYGOUS AND HOMOZYGOUS 2 AND HALF YEARS OF RESEARCH AND STUDY CURRENT TREATING DOCTOR HAS STATED I KNOW MORE ABOUT WIFES CONDITION THAN MOST DOCS

I too have just been diagnosed with necrotizing Myopathy caused by 'prophylactic' statins due to Diabetes ll. I experienced the muscle weakness, was taken off the statins (atoravastatin) and continued getting weaker and weaker. Finally, my Primary Care Physician said it was out of his scope and I was referred to a Muscular Neuro Specialist. After 40 blood tests, an EMG and a deep muscle biopsy, necrotizing Myopathy was confirmed by bold tests and biopsy. I have been undergoing PT to regain some balance and walking skills as well as taking 100mg Prednisone per day to try and hold the muscle weakness in check (in some cases, regain some muscle strength has been regained). It has been a month of Prednisone and other than 8 lbs. of weight gain, no improvement in muscle strength. I will be seeing my specialist next week for the next suggested treatment.

What can you do about it ? Can it resolve the myopathy?

I also take methotrexate and ivig infusion

I also have it !!!

What can we do about that mthfr gene ,will it go away with meds?