Is it rhabdomyolysis?

Cat Mom2 · Joined: 20 Dec 2006 Posts: 243

One of my friends that I have been talking to about the dangers of statin drugs and I thought had gotten off of them had gotten back on them without telling me. He has been having back pain for over a year and a ton of other problems, can't walk across a room without having to stop to rest, trouble breathing, extreemly forgetful, edema. Anyway, he recently went through a bunch of tests and they have found high levels of protein in his urine. I asked him if he had gotten back on the statins and he admitted he had, I also asked him if his urine had gotten darker and it has and said the doctor asked him that and if it foamed when he "went" and it has. They have him scheduled for a biopsy on his kidneys. He called me to see what I thought it could be for.

Rhabdomyolysis would fit all of his symptoms and problems he has been having. So, what are the chances that it is rhabdomyolysis? He has been having these problems for a few years now so I am afraid the damage is done. He has been complaining to the doctors for a long time about these problems and they have run tests after tests without anything showing up until now. THIS is the first time they have looked at his kidneys and urine.

David Staup · Joined: 28 Nov 2007 Posts: 269 Location: granbury, texas

cat mom,

pretty much what I experienced. what is his ck level? is his urine cloudy?
I he needing to drink a lot? is his urine output lower than his liquid input?
is his back pain on the right side around the bottom of his rib cage? Has he been constipated? all these are signs of rhabdomyolosis!

in any case the immeadiate concern is electrolyte replacement...Have him mix 1/8 teaspooon of morton lite salt mixture (sodium and potassium) in 32 oz water and drink only that mixture for a few days....the electrolytes are necessary for the kidneys to clear the muscle debris..
on the third day of this I passed "milkey white urine" and everything started getting better with the back pain, the constipation, and with lower activity levels my urine clears etc.

If you google rhabdo you will see that the treatment is electrolyte replacement, I cannot believe the doctor did not suggest this as it cannot hurt short term (and probably not long term)

David

David Staup · Joined: 28 Nov 2007 Posts: 269 Location: granbury, texas

catmom

Definately do the above before allowing a kidney biopsy.

David

David Staup · Joined: 28 Nov 2007 Posts: 269 Location: granbury, texas

catmom

one more thing, if he is on bp meds have him watch his bp...as my kidneys cleared my bp went down to the point where I had to stop first one then the second bp med due to bp going below 90 over 50...My doctor told me after I had to stop the first that most bp problems originate in the kidneys...by the way I used the phrase "had to stop" just for brevity...I was happy to stop actually!

let us know what happens

David

Cat Mom2 · Joined: 20 Dec 2006 Posts: 243

David, I called my friend.. The only levels the doctor mentioned to him was the protein in the urine.. his was 5.2 and he said he thinks the doctor said it should be 1.2.. (?) He says his urine is darker, that you maybe could call cloudy. His pain is across his lower back and starts after he has walks just a little ways.. he said he huff & puffs, out of breath and that is when the back pain starts.. it runs from the rib cage down to the lower back.

His doctors office called him before they closed today and want him in for another test tomorrow where he gets in some doughnut looking thing and they take pictures of his kidneys (from what he understood), and they took more blood from him today.

David Staup · Joined: 28 Nov 2007 Posts: 269 Location: granbury, texas

catmom

The doughnut looking thing would be a CT scanner and is probably not the best test to show the muscle cell debris in his kidneys. The best test is one called an IVP which is an older test that shows blockages by looking at a dye as it passes through rather that trying to see the blockages themselvs...the CT will show kidney stones and such but not muscle debris in the tubuoles...

His bloodwork MAY be more helpful when the results come in have him ask for a copy.

no matter what have him start on electrolyte replacement..if he doesnot want to mix his own start with pedialyte or gatorade G2. it cannot hurt.

David

Cat Mom2 · Joined: 20 Dec 2006 Posts: 243

I talked to him again last night and he said to thank you for helping. He is going today to get the lite salt and start drinking that electrolyte replacement. He called to make sure he knew exactly what to get. He calls on Sundays without fail so maybe we can get a update Sunday to see how that works for him.

He is one who has blindly trusted doctors and filled every Rx they always gave him without even knowing what it was for or why he needed it and at one time he was on over 20 different medications. Now he calls me and wants to know what the medication is for and what the side effects are. He sees 3 different doctors and all 3, prescribe medications. He said one of the doctors offices called him at one point in a panic and asked him he he had taken the new medication they gave him yet... it was a deadly combo with one he was already on.. Yet they looked at his medication list AFTER he has the new Rx in his hand and left? That is when he started calling me to investigate his medications.

gotts1936 · Joined: 19 Jan 2008 Posts: 242 Location: mcminnville,OR

Cat Mom2, unfortunately, far to many doctor's do not worry about side effects. They use us as guinea pigs and wait for us to complain about pain, etc. If we do not complain they assume everything is fine, but is it the responsibility of patients to research the medications prescribed for us? I think not!

gotts

Cat Mom2 · Joined: 20 Dec 2006 Posts: 243

gotts1936- The lady that told me that is a nurse and her husband a doctor.. What else could she do to defend her profession and husband's but to throw it back into the patients lap?

They have to do something so they can live with what they are doing to people so blame the patient!

Cat Mom2 · Joined: 20 Dec 2006 Posts: 243

He called, said his urine is not as dark as it has been nor as sudsy. He also said for some reason he was able to do things that he couldn't do before that made his back hurt. I want to give him a few more days and see how he is doing again.

David Staup · Joined: 28 Nov 2007 Posts: 269 Location: granbury, texas

catmom,
well that fits with my experience...after three days on the electrolyte mixture my back (Kidney) pains got better and my urine started to clear. If he takes it easy for a while his urine will probably clear completely and only darken briefly when he does a bit much...how much that is depends on how much permanint damage has been done.

David

Cat Mom2 · Joined: 20 Dec 2006 Posts: 243

He has called me just about every day since I first posted about him. They had him come in Wednesday, Thursday and Friday for tests and more blood work... This is scearing him. They are not telling him anything, just calling him to come have these things done. I told him to start asking questions when they call for more tests and blood work like, what are you looking for, what do you suspect, what have you already ruled out, how long before we have a answer? He is not scheduled to see the doctor until October 14 and he has become very concerned. I told him also to ask for copies of all the test results they have done and keep them in a folder... that way his other doctors can copy them and see what has been done and so another of the same test won't be preformed needlesley.

Like I said before, he has always blindly just done whatever they wanted him to do and took whatever medications they prescribed without even knowing what they were for. I am SO hoping he has learned a lesson about being so blind and trusting of the medical community. In just a few years he went from working every day and living a very active life to just about being crippled and not able to hardly get out of the house!

David Staup · Joined: 28 Nov 2007 Posts: 269 Location: granbury, texas

catmom,

There is only so much you can do... if he won't take some control by asking questions, and passing on things learned here there is no way you can help him....he is being run through the same series of tests that many of us have seen and they are clearly designed to muddy the waters and generate costs.... we all know people, family members even, who will not believe that this is what it is...a big fat lie...brace yourself and move on if you must.

David

Cat Mom2 · Joined: 20 Dec 2006 Posts: 243

David, he called me last night and had me write this down "Necrotizing glomerulonephritis", he had some paperwork (didn't say from where) that had diagnosis "Necrotizing glomerulonephritis", Secondary 30% Sclerosis".. That is all he had and didn't know what any of it meant. He said that doctor talks to him using big words that nobody but he (the doc) understands. He said he told the doctor to use words that people can understand and quit acting like he was so high and mighty and him (my friend) a idiot.

He told Jim that there is treatment for it with heavy doses of medication and he will have to go in the hospital to get started on it so they can monitor how he reacts to it.

Here is what I found on Necrotizing glomerulonephritis...
*http://www1.wfubmc.edu/nephrology/disease/Necrotizing+glomerulonephritis.htm

Go read it and see if you draw the same conclusions that I do...

I am wondering if there is a statin connection now? I also wonder how long he has had this.

They are still having him come in for tests and blood work frequently.

David Staup · Joined: 28 Nov 2007 Posts: 269 Location: granbury, texas

catmom

there is no way I could guess as a layman what is going on with just those diagnosis and no other info... every doctor I saw tried their best to diagnose something other than statin damage...
my guess from all you have said is chronic low level rhabdomylosis but he and you are not supplying enough info....

he really needs to get a second opinion and go in armed with some of the info from this and other sites start with this one:

*http://www.spacedoc.net/chronic_rhabdomyolysis.html

I don't know what more to say...except get more info..ie what results from electrolytes is he still drinking them, is he limiting activity, is he still taking statins etc. etc. etc.

David