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Author Topic: Time to play guinea pig  (Read 3072 times)

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Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Time to play guinea pig
« on: February 17, 2009, 07:27:36 PM »
The doc pulled me aside today to let me know my most recent lipid panel, etc., still sucked and my CPKs were still too high (somewhere in the 600s - better but still not good.)

So, he is increasing the Crestor I am taking from 10mg to 20mg, but I am to take them every other day, not every day.

This is something new the researchers have been looking into. The doc hopes it will help keep my lipids in check without causing my CPKs to go even higher.

Mind you, this was all done after I changed to the new way of eating, more Mediterraneanesque, so to speak.

So, since this skip-a-day dosing is new, we'll have to see what happens. He has already given me a lab slip and wants my lipids checked in about three weeks maximum.

I still haven't had an appointment with the doctor. He just pulled me aside today. I will probably see him next month - with an official appointment this time. I have a list of things to discuss I don't want to bother him about unless he is getting paid.

Oh, and I didn't even make it to the appointment. He said today he is going to refer me to a cardiologist to have a graduated stress test done.

He hasn't mentioned the other end yet, colonoscopy, etc.

I was going to ask him if a colonoscopy hurts if you are a born again virgin, like I am!  ::)

I didn't think I should press my luck.  ;)

Onward and upward.

HUGS,

Mark
« Last Edit: February 19, 2009, 10:31:06 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Being Swiss

  • Member
  • Posts: 14
Re: Time to play guinea pig
« Reply #1 on: February 17, 2009, 09:00:42 PM »
Hi Mark!

We're still working with Sortis (Atorvastatin); our insurances are slow, slow, slow... - I must take 40mg a day, including problems with my muscles. My lipids and "diets" are things we no longer discuss. I believe in James Bond: "You only live twice". And I think I need a lot of "Stufato" and other unhealthy meals in THIS life...

Just make sure they never talk you into a heart scintigraphy! I (seemingly looking like a healthy young man  ;)) did the bicycle version, and all of a sudden I felt dizzy. Next thing I realized: "Emergency Room" must have been a rather realistic program (sweating doctors, nurses with five arms, but no George Clooney). My blood pressure - usually rather high - had run havoc (hope that's the correct word), and I had to stay in hospital for two days.

And that's why I'd prefer the born again virgin examination (it doesn't hurt as long as you are under sedation). Enjoy it!

Bruno


The best-looking Swiss gay my mum could produce. She was rather in a hurry...

Offline rondrond

  • Member
  • Posts: 1,712
Re: Time to play guinea pig
« Reply #2 on: February 18, 2009, 01:27:26 AM »
Mark,

Sorry to hear about the results on your Lipid Panel. I know how hard you have been working to get them under control.

I was put on Gemfibrozil/600mg/2X and it must have done the trick as my lipids have Dramatically improved. They are actually in normal range.

If you need them lower, why would he decrease your dose to every other day? I confess I don't know anything about Crestor.

At my age, I need to take any chance I get to lose my virginity  ::)

Hope the Crestor and the diet work for you.

Ron~

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Time to play guinea pig
« Reply #3 on: February 18, 2009, 09:54:47 AM »
Hey Bruno,

Yep, the aching muscles are a fact of life for me. The doctor doesn't ask whether the muscles are aching, just whether the aching has gotten any worse.

I guess there are three of us among the doctor's HIV caseload who are dealing with this. There doesn't seem to be much of an answer.

The doctor said yesterday it is, at least in part, genetics, in part the meds and would be my diet and lack of exercise if I hadn't changed those. I do still exercise three times a week, I tried to go five times a week, but could not keep doing it with my work schedule.

Of course, now I have a craving for cheese enchiladas, with green chile, and a roasted jalepeņo.

I'll settle for Egg Beaters for breakfast, a tuna sandwich (made with fat free, cholesterol free dressing), and a salad for supper.

Hey Ron,

The reason he is alternating the day is he is upping the dosage of the medication, from 10 mg to 20 mg, but doesn't want that to increase the damage being done to the muscles.

So, he said some research indicates this route may work to help control the lipids yet not cause more problems in the process.

I guess we'll see.

HUGS,

Mark

« Last Edit: February 18, 2009, 09:56:40 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Time to play guinea pig
« Reply #4 on: February 18, 2009, 11:22:52 AM »
Mark,

I'm sorry to hear that your numbers are bad after all the hard work you've put in changing your diet completely and all the exercise.

So frustrating when you hear your doctors say "I don't know why"!!!  >:(

Still, I'll keep sending positive (every pun intended)  ;) energy you way that this on a day/off a day dosing works.

AA (trying to picture a guinea pig with glasses & a beret)  :D
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline rondrond

  • Member
  • Posts: 1,712
Re: Time to play guinea pig
« Reply #5 on: February 19, 2009, 03:16:55 AM »
(trying to picture a guinea pig with glasses & a beret)


Well, at least we'll know which guinea pig is ours!  :D
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Time to play guinea pig
« Reply #6 on: February 19, 2009, 09:13:58 PM »
Just a quickie update.

The doctor broached the subject of my switching meds to address the lipids if the new statin regimen doesn't do the trick.

He is thinking of Raltegravir (Isentress), coupled with Truvada, I think.

I guess I better start doing my research.

HUGS,

Mark

Edited for a mispelled med name
« Last Edit: February 20, 2009, 11:31:28 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Time to play guinea pig
« Reply #7 on: February 20, 2009, 03:20:00 AM »
I'm on Insentress, Truvada, Pezista, Norvir and have no problems with the Insentress.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline J.R.E.

  • Member
  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: Time to play guinea pig
« Reply #8 on: February 21, 2009, 09:12:03 AM »
Hello Mark,

I don't have any advice to give you. Just hope that you get some answers and solutions soon. I stopped the Lipitor at the doctor suggestion ( Which I was taking every other day) Because of the muscle and leg cramps..( which by the way haven't really improved or gotten worse) I also had some much improved numbers....So I have a feeling my numbers will change for the worse on the next blood test. I have substituted Simvastatin for Lipitor, And I continue as I have for the past 5 months or so on Astragalas and Artichoke leaf extract. Whether adding  this has any effect on my last numbers , I can't say.

Post #43 In this thread ;

http://forums.poz.com/index.php?topic=25133.0



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline bobik

  • Member
  • Posts: 315
    • My worksite
Re: Time to play guinea pig
« Reply #9 on: February 22, 2009, 11:15:16 AM »
Hey Mark,

just to encourage you: my lipids got better with Isentress. Also my lipodystrophy seems to be getting better, I lost a bit of my belly and 2 kilo's.

As for the statines: I had musclepains when i started with pravastatine but the pain did go away after a couple of weeks. I'm on 40 mg daily. My cholesterol is now being monitored because maybe thedosis can be reduced now that I am on Isentress.

Hope you'll be fine soon! I think changing meds is a wise thing to do in your situation!

Hug

Coen
Coen Honig at Facebook

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Time to play guinea pig
« Reply #10 on: February 27, 2009, 12:22:56 AM »
Well, after having electrodes glued all over my chest (by a not-unattractive technician who was very caring) and marching on a treadmill until I thought I was never going to catch my breath ever again, I managed to complete the graduated echo stress test.

Better yet, the test results are in.

My heart is surprisingly healthy.

There is one leaky valve, not uncommon for people my age (DAMN, there is that phrase again!).

My left ventricle is somewhat hypertrophic, which my doctor said is a fancy way of saying it is a bit enlarged.

The doc said that is often a result of high blood pressure.

I reminded the doc I don't have high blood pressure, or didn't until recently. It has been higher than it used to be.

He said we will keep an eye on my blood pressure.

All in all though, it went quite smoothly. I even was able to watch my heart beating on a TV screen.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline rondrond

  • Member
  • Posts: 1,712
Re: Time to play guinea pig
« Reply #11 on: February 27, 2009, 04:28:27 AM »
Glad you've got a healthy heart.

Already suspected it was enlarged/big,  by your generosity and caring.  ;)

Ron~
« Last Edit: February 27, 2009, 04:30:17 AM by rondrond »
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: Time to play guinea pig
« Reply #12 on: February 27, 2009, 08:08:21 AM »
Glad to hear you had a nice tech ... and even better that your heart is strong & healthy.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline hudstar

  • Member
  • Posts: 130
  • 2010
Re: Time to play guinea pig
« Reply #13 on: February 27, 2009, 02:02:20 PM »
I had a problem with lipids that work hand in hand with lack of energy. My doctor avoided me from taking more pills and told me to change my diet. I changed my diet, not that I ate unhealthy but just added more fish and more exercise in my regime. I was told to do muscle strengthening exercise more than cardio so I did that. The thing that gets me is that I reach a good level of wellbeing and test results come back good then I go down again. Its like playing tag. My lipids border on pill taking and try again with more diet and exercise
diagnosed 1988
POZ personals - hudster

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,847
  • Vegas baby!
Re: Time to play guinea pig
« Reply #14 on: February 27, 2009, 02:37:37 PM »
Mark, I'm glad your heart's pretty healthy.  I just did the stress test, but because of my knees, I can't walk on a treadmill.  So, the nurse injected a medication into my veins via i.v. and it got my heart up to 150 beats per minute in about 3-4 minutes, and kept it that way while the ultrasound tech was doing the pictures.  It was alright, though; I just kept deep breathing.  I have two badly prolapsed valves, but nothing clogged.  Now that's amazing.

Anyway, glad you're alright.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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