Fellow necrotizing autoimmune myopathy patients: Important to note that we have very rare diseases. They've been looking for these 24 patients for many months already. IF you are eligible, and you do not volunteer, who will? Out illness is not like most others, where there are thousands of tens of thousands of patients.
@@samward2416 Sure. I had difficulty reaching my arms up to wash my hair. Also unusual for me difficulty breathing on long fast walks. If you go to your doctor, they'll do a blood test to check your "CK level". For men it is normally under 175. If you've got what I've got it will be way way high. Mine was 20,000.
I was diagnosed with NAM and went on IVIG. CKs went from 12600 down to 179 within a year, and I received full 100% range of motion and proximal strength.
Terrific presentation. I've had myositis since 2006. It is great now that it is being broken down into the various types and their different mechanisms. I think this will lead to better analysis of what works and what doesn't. A drug that only works on one or two types of myositis will hopefully show up as working, whereas before its success on one or two types would be buried beneath its failure on the other two dozen types of myositis. It is also great that now more accurate prognosis can be given earlier in the disease. My particular version turned out this year to be anti-HMGCR. But back in 2006 I had to wait until a few years of observation of my illness to even get a feeling of whether my illness would include interstitial lung disease, cardiac involvement, scleroderma or rheumatoid arthritis.
If you are living with necrotizing autoimmune myopathy (NAM), also called Immune-Mediated Necrotizing Myopathy (IMNM), you are NOT alone! Join us for caring, compassionate and authentic support, including a monthly video/audio session just for those living with NAM. I welcome you to join us and learn more at understandingmyositis.org/support #myositis #necrotizingautoimmunemyopathy
I have SLE and woke up in hospital (was out 3 days with unknown cause (maybe new meds and high stress) with CPK greater than 3000. I am concerned because I know my muscles seemed to melt off of my body. After hospital it took 6 months to just be able to walk, to my mailbox…. My Rheumatologist suspected NM. My CK has been ok, but I’ve been having blood and blood clots in my urine, lately. My Rheumatologist is watching me. But since hospital, when muscles “melted@, off my body, my left thigh feels swollen and extremely painful. Steroid bursts help for short periods. What should I ask for text wise? My EMG using needles in said muscle showed it was signaling, though neurologist stopped test due to severe pain. What is wise to ask for next? Nephrologist referral? CPK is within normal ranges but pain is still extreme. Please advise? Concerned about my kidneys, etc. thank you in advance! Also for posting your video! Very helpful and Hopeful.💕
Why keep a drug if it causes myositis ? that is very infuriating to me . I have DM and I had no idea statins caused myositis . But Im lucky I never had to take them .
It's a very small percentage. Like with other drugs, there are rare side effects that we as patients aren't often aware of. With this, they do list myopathy as a rare side effect. Hoping though that different types of cholesterol lowing meds will be prescribed more . Great question
![[DOKKAN BATTLE] Worldwide Campaign Announcement Video](http://i.ytimg.com/vi/zxfEiMksZQs/mqdefault.jpg)
Fellow necrotizing autoimmune myopathy patients: Important to note that we have very rare diseases. They've been looking for these 24 patients for many months already. IF you are eligible, and you do not volunteer, who will?
Out illness is not like most others, where there are thousands of tens of thousands of patients.
May I ask what your symptoms were at the start of this disease?
@@samward2416 Sure. I had difficulty reaching my arms up to wash my hair. Also unusual for me difficulty breathing on long fast walks. If you go to your doctor, they'll do a blood test to check your "CK level". For men it is normally under 175. If you've got what I've got it will be way way high. Mine was 20,000.
I was diagnosed with NAM and went on IVIG. CKs went from 12600 down to 179 within a year, and I received full 100% range of motion and proximal strength.
Very informative for a complex disease.
Terrific presentation. I've had myositis since 2006. It is great now that it is being broken down into the various types and their different mechanisms.
I think this will lead to better analysis of what works and what doesn't. A drug that only works on one or two types of myositis will hopefully show up as working, whereas before its success on one or two types would be buried beneath its failure on the other two dozen types of myositis.
It is also great that now more accurate prognosis can be given earlier in the disease.
My particular version turned out this year to be anti-HMGCR. But back in 2006 I had to wait until a few years of observation of my illness to even get a feeling of whether my illness would include interstitial lung disease, cardiac involvement, scleroderma or rheumatoid arthritis.
Thank you so much my husband has necrotizing autoimmune myopathy with ILD so thank you for this
Was he able to go into remission? I'm in the same boat.. This sucks!
If you are living with necrotizing autoimmune myopathy (NAM), also called Immune-Mediated Necrotizing Myopathy (IMNM), you are NOT alone! Join us for caring, compassionate and authentic support, including a monthly video/audio session just for those living with NAM. I welcome you to join us and learn more at understandingmyositis.org/support #myositis #necrotizingautoimmunemyopathy
why isn't Lipitor taken off the market ?
I have SLE and woke up in hospital (was out 3 days with unknown cause (maybe new meds and high stress) with CPK greater than 3000. I am concerned because I know my muscles seemed to melt off of my body. After hospital it took 6 months to just be able to walk, to my mailbox…. My Rheumatologist suspected NM. My CK has been ok, but I’ve been having blood and blood clots in my urine, lately. My Rheumatologist is watching me. But since hospital, when muscles “melted@, off my body, my left thigh feels swollen and extremely painful. Steroid bursts help for short periods. What should I ask for text wise? My EMG using needles in said muscle showed it was signaling, though neurologist stopped test due to severe pain. What is wise to ask for next? Nephrologist referral? CPK is within normal ranges but pain is still extreme. Please advise? Concerned about my kidneys, etc. thank you in advance! Also for posting your video! Very helpful and Hopeful.💕
Why keep a drug if it causes myositis ? that is very infuriating to me . I have DM and I had no idea statins caused myositis . But Im lucky I never had to take them .
It's a very small percentage. Like with other drugs, there are rare side effects that we as patients aren't often aware of. With this, they do list myopathy as a rare side effect. Hoping though that different types of cholesterol lowing meds will be prescribed more . Great question