POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: aztecan on March 17, 2009, 09:29:56 pm
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. . . is going to be given to me for breaking yet another record!
Yep, I saw the doctor today and I officially have the highest recorded CPKs he has ever seen. :o
His nurse and my pharmacist said the same thing. :(
Despite my taking Crestor only three times a week, those lovely little CPKs were just climbing like crazy.
I had hoped they would respond well. They had been 936 in January, which led to a change in my statin.
They had dropped to a mere 602 in February, but were still higher than the doc would like. He wants them at 225 or less.
So, we increased the amount of Crestor I was taking , but dropped the number of days I take it to three a week instead of every night.
The doc said there had been research about that being effective in us Hi Fivers on PIs who have cholesterol problems.
SIGH.
Well, that didn't work.
I got the results today. My CPKs were 2,857! :o
Truthfully, I knew something was wrong. I was having trouble walking and even shifting my Miata was difficult. My arms and legs felt like they were made of lead and I was very weak, which annoyed the living shit out of me.
The nurse said she didn't know how I was even walking. I told her I was too stubborn to lay about if I didn't have to.
Anyway, the doc gave me strict instructions. I am to take it easy (right, with my job?). I also am to drink copious amounts of liquids. He wants me to pee and pee a lot. His exact words were to drink "gallons." :-\
Apparently, I need to flush this stuff out of my system as quickly as I can. I am to do labs again next Monday to make sure the CPKs are dropping.
He also admonished me to get myself to the E.R. if things worsen. I told him I don't feel that badly, just no energy, strength or stamina.
He just gave me a perfect glare and made me promise I would - should it happen.
So, once everything settles out, I may be looking at a new med, or some other thing. Who knows.
Oh joy.
HUGS (hey, I'm weak, but not that weak ;) )
Mark
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Aren't your CPK's a cardiac enzyme? ???
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I saw the light too late, when that fickle finger of fate
Yeah came and broke my pretty balloon
I woke up, suddenly I just walked up to the happening.
Sorry -- I was having a moment for the Supremes before I actually read your post. :-[ ::)
Wow those numbers seem scary and yet their best solution to get them down is drink a lot of water and pee your troubles away ... the miracles of modern medicine. I really hope everything gets flushed out quickly and they find a suitable dose or medicine for you soon!
Your arms and legs felt like they were made out of lead and you were very weak and so rather than rushing off to the doctor you instead just get annoyed, which has me wondering if doctor avoidance is an LTS characteristic.
Hugs!
AA (who has many characteristics) ;)
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Look you stubborn ol' mule. ;) You do what your doc advises and take it easy. If you're having trouble shifting that toy car of yours...well, don't make me come out there and take away the keys.
Maybe a vacation is in order? Thinking of you doll.
Hal
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Oh dear, Mark. I'm so sorry your current regimen hasn't worked to bring those suckers down. I'll be thinking a lot about you and hoping for the best outcome with all that peeing. Please, please take care of yourself, and if you need to, damn it, get medical attention. You don't need to suffer.
Luv, :-*
Betty
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I say take a vacation from work if you can, Mark. Do you have a few sick days coming? Sounds like someone needs a little R and R.
Take care of yourself.
Joel
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Yikes.....
I'm worried about you honey. Please take it easy.
Keeping you in my prayers, as always --
Hugs,
Alan :'(
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Thanks all. I am going to take it easy, or as easy as I'm able.
Along with the CPKs, my liver enzymes were still elevated, most likely because of the statins, but possibly because the statins have aggravated my liver and the NASH issue.
Anyway, cranberry juice is the order of the day! :D
HUGS,
Mark
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Hey Jacob,
Yes, you are right, at least in part. Some CPK enzymes are heart-related. Gratefully, mine have not been.
Here is a link and some info:
http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/003504.htm
Why the Test is Performed Return to top
CPK isoenzymes are performed when the total CPK level is elevated. Isoenzyme testing can help differentiate the source of the damaged tissue.
CPK is an enzyme found predominantly in the heart, brain, and skeletal muscle. CPK is composed of 3 isoenzymes that differ slightly in structure:
• CPK-1 (also called CPK-BB) is concentrated in the brain and lungs
• CPK-2 (also called CPK-MB) is found mostly in the heart
• CPK-3 (also called CPK-MM) is found mostly in skeletal muscle
Because the CPK-1 isoenzyme is predominately found in the brain and lungs, injury to either of these organs (for example, stroke or lung injury due to a pulmonary embolism) are associated with elevated levels of this isoenzyme.
CPK-2 levels rise 3 - 6 hours after a heart attack. If there is no further damage to the heart muscle, the level peaks at 12 - 24 hours and returns to normal 12 - 48 hours after tissue death. CPK-2 levels do not usually rise with chest pain caused by angina, pulmonary embolism (blood clot in the lung), or congestive heart failure.
The CPK-3 isoenzyme is normally responsible for almost all CPK enzyme activity in healthy people. When this particular isoenzyme is elevated, it usually indicates injury or stress to skeletal muscle.
What Abnormal Results Mean Return to top
Higher-than-normal CPK-1 levels may occur with the following:
• Brain cancer
• Brain injury (due to trauma, stroke, or bleeding in the brain)
• Electroconvulsive therapy
• Pulmonary infarction
• Seizure
Higher-than-normal CPK-2 levels may occur with the following:
• Heart attack
• There is a significant rise in CPK-2 levels in the first 2 - 3 hours after a heart attack. This test is used to diagnose a heart attack.
• The extent of the elevation depends on the severity of the heart attack. CPK levels may remain elevated up to 24 hours after a heart attack, and sometimes even longer.
• Myocarditis (inflammation of the heart muscle usually due to a virus)
• Electrical injuries
• Trauma to the heart (for instance, from a car accident)
• Heart defibrillation (purposeful shocking of the heart by medical personnel)
• Open heart surgery
Higher-than-normal CPK-3 levels may occur with the following:
• Crush injuries of skeletal muscle
• Multiple intramuscular injections
• Muscular dystrophy
• Myositis (skeletal muscle inflammation)
• Post-electromyography (a test of nerve and muscle function)
• Recent seizures
• Recent surgery
• Rhabdomyolysis (skeletal muscle damage due to drugs or prolonged immobilization)
• Strenuous exercise
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Hello Mark,
I am curious,... How has your blood pressurse been with these elevated numbers ? Also wondering, do you exercise/workout regularly, and has the doctor suggested that you cut down on the exercise for a while?
Thinking of you...
Ray
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. . . is going to be given to me for breaking yet another record!
......The doc said there had been research about that being effective in us Hi Fivers on PIs who have cholesterol problems.
SIGH.
.......The nurse said she didn't know how I was even walking. I told her I was too stubborn to lay about if I didn't have to......
Anyway, the doc gave me strict instructions. I am to take it easy (right, with my job?). I also am to drink copious amounts of liquids. He wants me to pee and pee a lot. His exact words were to drink "gallons." :-\
Apparently, I need to flush this stuff out of my system as quickly as I can. I am to do labs again next Monday to make sure the CPKs are dropping.
He also admonished me to get myself to the E.R. if things worsen. I told him I don't feel that badly, just no energy, strength or stamina.
He just gave me a perfect glare and made me promise I would - should it happen.
So, once everything settles out, I may be looking at a new med, or some other thing. Who knows.
Oh joy.
HUGS (hey, I'm weak, but not that weak ;) )
Mark
Another enigma associated with Aging with HIV/AIDS....and according to Mom "I don't think those doctors know anything about us older people, because they haven't had to deal with us making this long before"
~Damn~ How about a water pill? That'll flush out those toxins.
Take care of yourself.
Ron~
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When I saw the "mb" it made sense. I just remembered when I worked in the er that was a cardiac enzyme test we always ordered on chest pain patients. So which of those three is elevated on you?
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Hello Mark,
I am curious,... How has your blood pressurse been with these elevated numbers ? Also wondering, do you exercise/workout regularly, and has the doctor suggested that you cut down on the exercise for a while?
Thinking of you...
Ray
Hey Ray,
My blood pressure has been OK. Tuesday it was 130/70, so the systolic is slightly elevated by not enough to be worried about.
I had been working out, but last week found myself unable to complete the routine I have been doing for a long time. I thought I had the flu bug or something, because I just felt tired and worn out. That feeling increased daily,
The doctor told me to just forget working out this week and, depending on how I feel, next week too. He obviously halted the Crestor and the Tricor.
The good news is I am feeling stronger, but afternoons have been difficult.
The doctor called me yesterday to find out how I was doing. He apparently was more worried than I thought.
He rechecked my labs to make sure my kidneys were OK. He told me sometimes the dissolving muscles (caused by the elevated CPKs) can more or less "clog" the kidneys and cause problems.
Mine were fine. I guess that was another reason to keep drinking copious amounts of liquids.
Hey Jacob, it was the MM, or skeletal muscle CPKs that were elevated.
HUGS,
Mark
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Mark, I'm a bit concerned here. Like a few others have suggested I fail to understand why you are not simply using some vacation days this week or even sick days. Surely an ASO understands such instances.
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Yeah Mark, why aren't you taking any time off?
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Mark, I'm a bit concerned here. Like a few others have suggested I fail to understand why you are not simply using some vacation days this week or even sick days. Surely an ASO understands such instances.
Yeah Mark, why aren't you taking any time off?
Actually, I didn't feel that bad.
It just felt like someone had strapped lead weights on my arms and legs and I couldn't stand or walk very well. I really did have trouble with the clutch in my car. I could shift fine, but it was getting to the point I could not hold the clutch in while waiting for a stop light to change, my muscles were just too weak.
I know, it sounds lame, but it really happened.
If things had not improved, I would have had to take some time off until I felt more normal. But, when I stopped the Crestor and Tricor, the improvements started by the next day.
I still feel weak, but it is greatly improved.
It is weird though. I can't seem to get enough to drink. I am constantly thirsty.
I go tomorrow for more tests, this time for other issues. I have been having some inconvenient abdominal pains for a while and we can't seem to get to the bottom of them. So, my gall bladder is the next on the list to be checked.
Monday or Tuesday, I will go back for more blood work.
I went from not seeing the doctor for a year to having all kinds of things go wrong.
It never rains but that it pours.
HUGS,
Mark
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You sound like my old grandmother who never could admit to feeling bad.
(and I won't even comment on not going to the doctor for an entire year as a LTS at your age)
I hope you get yourself mended up quickly though :)
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You sound like my old grandmother who never could admit to feeling bad.
(and I won't even comment on not going to the doctor for an entire year as a LTS at your age)
I hope you get yourself mended up quickly though :)
Well, its not like I didn't see the doctor for a year, I just never scheduled an appointment. We would discuss things in passing, but I never really got the exam I should probably have had.
So, point taken. I will be more diligent in scheduling my own appointments in the future.
Your grandmother sounds like a feisty lady.
Thanks David, I hope to be fully mended soon as well.
HUGS,
Mark
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I'm glad you're starting to feel better. If it's your gallbladder that needs removing, that's really not a big deal, especially nowadays. A friend of mine just had his taken out, and it was done outpatient, do you believe that? I had mine taken out years ago, but they still kept people then for one night.
Anyway, I hope you keep mending! :-*
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Well, I did another blood draw yesterday. The results are in today.
My CPKs have dropped to about 1,300, which is a bit less than half of what they were. So, they are better.
I didn't realize how weak I had become until last weekend. I went bowling. Well, I tried to go bowling.
It wasn't pretty. I had trouble even throwing the damn ball down the lane.
The doctor told me today that while there has been improvement, it is still a way to go before things are close to normal again. I am to continue drinking lots of liquids and peeing my little ol heart out.
I have another lab slip for next week.
Of course, my lipids are probably going nuts. The doctor said he wasn't even going to think about that right now, not until I get back to normal.
I am trying to be good. I have cut out a lot of fats, etc., eat more vegetarian meals and still take my 6,000 mgs of fish oil.
I doubt that will be enough to keep things under control, but maybe it will help prevent my turning into a walking stick of butter.
Well, that's how things stand for now.
HUGS,
Mark
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Mark: get well (better)!
I just had dinner with a friend at CPK but i guess that's unrelated.
You are always so positive; glad the Doctor gave you that glare. lol.
8) -megasept
PS Nice to see a Laugh-in tie-in, you nefarious nob of negativity (Agnewism); naaw that goes to Dick Cheney!
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When are you getting your gallbladder checked?
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Hey Betty,
I did it last Friday. They said the results would be ready in about a week. It was another ultrasound, which was not a problem.
So far, the doc hasn't said anything about it. I will remind him when I get the chance this week.
HUGS,
Mark
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I need to send you a tofu cook book Daddy Mark!
Big hugs, Shaun
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Big Hugs Mark!
I hate the "not knowing what is going on" mystery thing. It's sometimes more of a headache than knowing what the problem is.
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Mark....
i just don't like the way things stand. Gawd....i hope we get all this fixed real soon...
robt
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Mark....
i just don't like the way things stand. Gawd....i hope we get all this fixed real soon...
robt
Robert, you and me both.
Well, the latest ultrasound results are in - they show nothing.
My gall bladder is just fine. The ultrasound did show my rather unhappy liver. Seems the NASH is showing up just fine. I expected that because my liver enzymes have been substantially elevated for a while now.
We still don't know what is causing the pain in my abdomen. I will worry about that when I get the rest of this under control.
The doctor is considering Niaspan again, this time gradually increasing the dosage to, we hope, a therapeutic level. Failing that, the plan is to do the Niaspan at whatever level I can tolerate it, then add small doses of Pravastatin, to augment the effectiveness of the Niaspan, all the while closely monitoring the liver enzymes and CPK levels.
I am still taking the 6 grams (6,000 mgs) of concentrated fish oil a day, so at least that won't change.
Oh, and we are still talking about switching my HIV meds. So Raltegravir may also be in my future.
If this keeps us, I am really going to rattle when I walk! ::)
Well, just another update.
HUGS,
Mark
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Geesh, Mark. I just want you to know I'm thinking about you. :-*
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Mark,
I can only imagine what you are going through.
Hoping for a speedy resolution.
Ron~
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Mark
What do you think the pain in your abdomen is from?
I hope it gets worked out.
Hugs
Joel
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Hey Joel,
I really don't know what is causing it. The pain is hit and miss, sometimes there, sometimes not, and doesn't feel like a ulcer or such.
It feels more like I have a bruised rib or strained muscle.
They have checked out just about everything with no results, which is frustrating.
I am beginning to wonder if it doesn't have something to do with they lipohypertrophic accumulations of visceral fat.
I really don't know though.
HUGS,
Mark
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Hey Mark...
You know, it sounds like you are onto something there. If its not a deep, sharp pain and seems more skeletal or muscular, that might mean you are suffereing form something like osteo arthritis....osteo porosis etc etc.
Kurt has all those problems and he has had problems breaking toes ...due to the brittle bones. So....be careful if you are doing anything too strenuous...even working out needs to be done at a moderate level.
Hugs
Joel
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Well, good news for a change!
My CPKs, checked yesterday, are just 369. That is really good news.
I have my doctor's blessing to begin exercising again, although he said to take it relatively easy at first.
He said we will discuss restarting some sort of lipid therapy in a few weeks.
So, for the time being, things are OK. I am trying my best to be good and cut down on fats so the lipids won't go absolutely nuts.
I guess we'll see.
HUGS,
Mark
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That's great news, Mark. Here's to them staying down.
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Congrats on your new number!