Rabdomyolysys- Diagnosis Difficulty

[harley2ride]

49 yr old male with statin injury. After spending 18 months to get someone to sat that it is (likely) related to statin use, my local doctor has been confused about the fact that I have had a consistently high white blood cell count (9 - 14), and frequent fevers, malaise, along with the severe myopathy, myalgia, and neuropathy. After searching for weeks on the internet, I've found that these are common with Rabdomyolysis. This also helps explain the stomach problems, intestinal problems, etc., I've had over the past months. I've finally asked my doctor to do the additional tests to see if they can prove or disprove rabdo. My condition has continually worsened over the past 18 months, desite treatment attempts. I now have very limited use of my left arm due to extreme pain and cramping in the bicep area. I'm hoping and praying that they will find something, but it appears that diagnosing rabdo in a patient who shows no current signs of kidney failure, or high CK count, will make it difficult. This has to be the most frustrating injury I have ever had. I would rather have multiple heart attacks, or dozens more kidney stones. At least I know how to treat those to some degree.

[sos_group_owner]

CK or CPK does not always detect muscle damage.

Has your doctor done a muscle biopsy yet?

[harley2ride]

Yes there was a biopsy which in conjunction with ECM results and other tests showed myopathy, neuropathic muscle disease, etc. The problem is that doctors don't seem to know what to look for, and when they find it, they don't know what to call it. These statin injuries seem to effect everyone with some similar symptoms, yet others have some slightly different symptoms.

[sos_group_owner]

Hi H2R,

Re: when they find it, they don't know what to call it...

At least myopathy has been identified, but I totally agree,
they not only don't know what to call it, most times they
don't know how to treat it. With all the statins on the
market, it's absolutely appauling that doctors do not
know the symptom of or how to treat Rhabdomyolysis or
that they even allow statin damage to progress to that
level.

Have your doctors determined a course of treatment?

Fran

[harley2ride]

I've tried numerous treatment options. So far all they have done is to slow it down. Every new medication requires about eight weeks on it to see if it makes a difference. Waiting to see what the doc tries me on later this week. DHEA did not make any noticable change either plus or minus. I'm no doctor, but it seems like muscle cramps and pain are usually due to lack of oxygen. I'm going to ask the doctor tomorrow if he is willing to try putting me on oxygen for a few weeks to see if it makes a difference. All my tests have shown that my oxygen levels are low. If anyone has had any oxygen therapy for statin muscle injury, please report on if you had any success!

[tex62]

Harley,
There is an interesting post on this web site that was posted under the user name don zim. The link is http://www.spacedoc.net/board/viewtopic.php?t=87 This patient experienced Parkinson-like symptoms after taking statins. Since he was trying several different treatments at the same time, it’s difficult to say how much the oxygen therapy contributed to improvement in his symptoms. However, his wife reported rather dramatic results after Hyperbaric Oxygen Therapy (HBOT). My husband is going to his doctor tomorrow and plans to discuss oxygen therapy with her. I will report back if he tries this form of treatment

[tex62]

Harley, Our doctor wanted my husband to wait until after his carpal tunnel surgery to discuss oxygen therapy. He's had surgery on his right hand two weeks ago with very good results. Surprisingly, his left hand has improved also and he has no plans for surgery on that hand at this time. His total improvement has been very good in the past month. He's even been able to start exercising again with no adverse affects. We don't know what was responsible for the leaps in recovery this past month; however, he started taking large doses of CoQ10 (1300mg to 1500mg/day) about the time the recovery started. It could have simply been the passage of time since discontinuing Zocor/Tricor or a combination of the two. Just curious - did you try oxygen therapy? If so, did you have good results?

[harley2ride]

Doctor said that oxygen therapy would not help, as the tests I had done in San Diego, showed that my muscles won't absorb the oxygen anyway. It is getting frustrating. I tried a mild workout the other day, and could only ride an exercise bike for three minutes on setting 2, before my muscles, just refused to pedal anymore. I didn't even reach the fat burning stage for heart rate before my muscles just gave out. Had to sit there for a few minutes before I could even walk. My bicep/tricep muscles are in constant pain/cramping, and spasms. Putting Heat (the rub in stuff) on them, helps for a short time. I can't even play a game of pool without my arms hurting. This stuff sucks... I've been off the Crestor for 2yrs now, and still I'm declining. Just had a urine test last week to make sure that I didn't have Rabdo, and urine came back negative. I'm slowly but surely losing muscle mass and strength, and have noticed that I'm getting more and more forgetful. I even forgot my login for my work pc the other day. Starting to drink more and take more pain meds, to sleep longer and avoid the constant pain. I'm so glad that most people slowly get over this crap, and wish I was one of them.

[Realfooddude]

No, for most people what is called elavated or high cholesterol is normal. Using some arbitrary number for ALL people is looney. We don't all have the same cholesterol needs. No, for most a number is just a symptom that may indicate a problem or be totaly innocent.Hyer tension is not a disease but a symptom of a problem that can only be delt with by addressing the cause. Treating symptoms does none of this." My disease may not be fatal, but I can ease my fears, by taking to twelve dollar pills each day for fifty years." That's a line from, "For The Drugs I need" $438,000 over a fifty year span. That's a killing.
The commercials for statins clearly state, statin X... "has not been shown to prevent heart attacks or heart disease." So why do you want to risk so much on so little return? Why take them? It just don't see the sense in it for 995 out of 1,000 people. Why do they call it a simple liver test? Who cares if it is simple? Why should I not be alarmed about a serious side effect that includes wasting of muscle tissue?! I know what the heart is. I can think of many ways to protect your heart and all help greatly. The info is out there in great amounts. You just can't get much useful info from the media because of the confict of interest. All drug commercials I find silly, offensive and insulting. They should be illegal.

Regards,
RFD