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Myositis / muscle weakness

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Posted 8/6/2009 11:54 PM (GMT 0)

Stacie - I see that this is an old thread that has been renewed.  I guess I never saw it, originally.  What I'm curious about is whether your liver enzymes did actually indicate myositis.  I've never heard that elevated liver enzymes could be an indication of muscle inflammation, and my LE's do jump up from time to time for no apparent reason.  When they do, my sed rate is usually normal, but my CRP gets quite high.  They calm down over a period of weeks.  I had come to the conclusion that it was the Advil causing the elevation.....but it might be I was using more Advil because the inflammation was causing more pain.  Talk about chasing your tail!

Sam - I hope you get some answers.  Like many of us - it takes a few doctor's to find one that is willing to listen and do some investigating.  Sounds like a rheumy would be the best place to start.  And maybe you can gather together your history with this pain beforehand, and have it written down.  It's so hard to remember everything - especially when things have occurred over a long period of time.   Good luck to you!

Lucy 

Posted 8/7/2009 3:11 AM (GMT 0)
Stacie--
ALT is pretty much straight indicative of repair of damaged liver tissue (while some of the other liver tests are more multiorgan). The weakness and shaking you descirbe can be from some sort of toxicity, I got it on the isoniazid. I would suspect a med of damaging your liver. I dont think I've ever heard of a doctor blaming high ALT on muscle damage
Lab tests online says "The ALT test detects liver injury. ALT values are usually compared to the levels of other enzymes, such as alkaline phosphatase (ALP) and aspartate aminotransferase (AST), to help determine which form of liver disease is present. "

http://www.labtestsonline.org/understanding/analytes/alt/test.html

My ALTs have been in the hundreds before, but the more your liver becomes damaged, the less high the ALT becomes until you have 0 ALT and then you get fibrosis (scarring which may be permanent--cirrhosis). Lower ALTs with worse symptoms can mean worse disease. Most people on transplant lists have very low normal ALT because the liver can not produce the enzyme anymore due to damage. Most docs don't understand this, but hepatologists do.

The article also addresses drugs. Several drugs you take may be hard on the liver, and the onset of "prediabetes" from prednisone or other drugs that trigger diabetes can be a problem. I would see a hepatologist, especially because of the muscle weakness and tremor, which can be a really bad sign in liver disease, and let them figure out your meds and run a few tests. IF you don't need a referral for your insurance, you can usually call a hepatologist and speak with the nurse and explain your problems and see if they will see you for a consult.

Meds can quickly destroy your liver sometimes, some meds cause liver failure and death in individuals who previously did not seem to haye any liver issues. I would want an abdominal ultrasound and blood insulin level too. The ultrasound is very good at detecting changesin liver tisue,like fat or scarring as well as other stuff.

I cannot take Flexeril and some of the drugs you take I'm not familiar with but I suspect Imuran is really hard on the liver. Methotrexate is too.

I sure hope you get the right care, if you have more labs, like bilirubin, creatinine, albumin, PT/INR, these tests can help determine if its something just starting.

Becareful going downstairs and if you feel really out of it be sure to get to the ER. You might be having some kind of a reaction.

Take care and I will pray for you. You certainly didn't need this to happen.
Posted 8/7/2009 3:32 AM (GMT 0)
Myositis (polymyositis and dermatomyositis) are normally diagnosed by symptoms, cpk, and muscle biopsy.  Other tests like emg and mri are sometimes used but are not really necessary to diagnose myositis.

Liver numbers can be affected if you have a lot of muscle breakdown (that is what cpk measures).  I had auto immune induced hepatitis and almost died from liver failure.  Most cases are not that dramatic however.  Obviously....I made it and my liver is normal. 

http://www.mda.org/publications/fa-myosi-qa.html

Bill

Posted 8/7/2009 4:49 AM (GMT 0)
Stacie i'm so sorry to hear your having these problems and hope you feel better soon. I get the shacks from my muscle weakness and with that 1000 lbs coffee mug (it does fell like that) i'll be drinking from an expresso cup soon so it'll only feels like 100lbs ;) lol.

Here's wishing you all the best

Bryan
Posted 8/9/2009 5:33 AM (GMT 0)

Thats been part of the frustration, I'm not sure if it is because I have managed to push myself to live a somehwat active life (not as I would have liked but more than I suppose a Dr would have expected) or what, but I have not gotten a Dr to take the issue seriously enough to ever even look more deeply into it.  Now, I have to admit I've been out of the country for several years and, just getting back now, it has been some time since I have gone in and spoken to a Dr about it.  Perhaps the added age will lend some credibility to my case now :) The added years (I'm only 33 so I'm not that old, but I sure feel older than I should some times) have certain exacerbated the pains and frequency, as well.  Things do sound quite similar here though, and I have begun to notice degeneration in my calves, which might be normal, but is certainly something that caught my attention a few months ago.

To be free of the pain would be a miracle.  If not that, to at least be  able to put a name to it would be a close 2nd place.

Thankyou for the responses :)

Sam

Also hope things are going well or as best they can be for the rest of you :)
Posted 8/6/2015 3:02 PM (GMT 0)
New to the site, just read Victoria's comment about her legs burning & feeling heavy especially in the morning. I know what this is like (pure hell!!) as I have been going through this type of thing for several years now (I am 46yrs old). I have had a variety of symptoms beginning back around 2008, constant calf fasticulations, constant severe tinnitus, geographic tongue, digestive issues, worsening Ranaud's, and fatigue. Tried all kinds of dietary changes, vitamins, supplements to no avail. Over the past two years I have had increased muscle soreness in my legs to the pint where I can only climb 10 stairs without stopping and letting the muscle burning subside. Any type of exercise throws me into a major soreness/fatigue episode which last for days. Had neg ANA and pos RNP back in 2012, seeing a different rheumatologist and neurologist now. Had 1:80 pos ANA in Dec 2014 and Pos RNP, most other bloodwork was ok. Had a lower limb MRI done and it came back abnormal but not "diagnostic". Fatty infiltration in all of the lower leg muscles, no signs of active myosytis. Just had a calf muscle biopsy and am awaiting the results now. Trying a 40mg Prednisone taper currently and it is definitely helping the leg muscle soreness and overall fatigue. I have managed to stay active with walking/biking through all of this, however, my family life fell apart. My wife was not supportive and called my conditions "ficticious", which she relayed to my son as well. I was the only one away from the home working for 14 years and this is the thanks I get. Now I am going through a nasty divorce and trying to obtain an actual diagnosis. How much more do I have to endure to get an actual diagnosis of something?
Posted 8/6/2015 3:52 PM (GMT 0)
Maharg,

Sorry to hear of your troubles. I wonder if vasculitis has been considered? What is your current rheumotologist thinking?

Have you tried an anti-inflammatory diet? That might help a little, especially since the Prednisone seems to be helping.

You say extreme soreness, exhaustion with any exercise. I didn't have anything nearly as bad as you are describing, however, I found that starting with the simplest physical therapy exercises, done ONLY in the small recommended amounts, ended up helping in the long run. Doing these only after soreness from the previous session totally subsided, continuing and only increasing after 4-5 sessions that did not produce soreness... eventually after months and months I've been able to increase to something resembling normal function.

Also, I wonder if you've seen an endocrinologist? Maybe there is something going wrong in that area...
Posted 8/6/2015 5:28 PM (GMT 0)
Hi Lynwood,

Thanks for the reply. The rheumatologist is looking at a MCTD possibility with the Pos RNP value.
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