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Author Topic: It may be time to experiment . . .  (Read 3381 times)

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Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
It may be time to experiment . . .
« on: December 16, 2012, 11:23:52 PM »
Recently, the issue of my hyperlipidemia and the cardiopulmonary consequences thereof has been raised by my doctor.

The reason it came up now was my sister, who called me to inform me she is having heart trouble. She is three years my junior, but is already seeing a cardiologist to address her issues.

I am hoping it is a temporary thing in her case.

My father had a history of heart trouble. He died from his third major heart attack.

On top of that, when I was being screened for the surgery to remove my hump, they found I had a minor issue with my heart. Something to do with the nerves which carry the signals to make my heart beat are not functioning properly.

So, my doctor is concerned because, as he put it, I have three strikes against me. I was a smoker for years, there is a history of heart trouble in the family, and I have hyperlipidemia.

Actually, there is also the HIV thing, so maybe that is four strikes. Anyway, the big concern at the moment are the lipids.

They have been an ongoing problem for a long time. I switched to Isentress and Truvada to help lower my lipids.

But, when I took statins, I  developed a fair degree of rhabdomyolysis, which wasn't much fun.

We stopped the statins. But now, despite my best efforts at diet and exercise, the lipids have again risen too high.

Interestingly, Isentress can cause elevated CPKs, which I still have. But, as I mentioned in an earlier thread, I really can't change. This is about as lipid-friendly a regimen as we can get.

The doctor is also concerned because I already had problems in the past, and the doctor is worried I might again develop hepatic steatosis, or even a recurrence of nonalcoholic steato hepatitis.

Long story short (I know, too late), we may have to try a statin again. Perhaps Crestor, which I have heard good things about.

If we can manage to drop the lipids with a small dosage, I may not end up with side effects that are too severe. If the pain and weakness can be kept to a lesser level, I may well learn to live with them.

I guess we will discuss it at my next appointment. I was supposed to see him Jan 8, but I rescheduled because someone else needed to be seen and they had more critical issues to address.

I think I see him the third week of January, so that gives me time to contemplate this further.

One problem is that insurance companies are balking at paying for Crestor since Lipitor went generic. So, this might require the doctor to get a prior authorization from the insurance company should we decide to go with Crestor.

Yep, my HIV is well controlled and my immune system is wonderfully strong. It is the rest of me that is falling apart.  :o

HUGS,

Mark
« Last Edit: December 16, 2012, 11:31:15 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline BT65

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Re: It may be time to experiment . . .
« Reply #1 on: December 17, 2012, 04:58:24 AM »
Mark, it seems that the issue with your lipids is pretty critical.  I know my situation is different, statin wise, but my doctor prescribed Crestor for me, since Lipitor caused those muscle issues.  So far, so good.

I hope your doctor can work something out for you that will be effective.  It sounds troubling with that family history.  Please take care and keep us updated! :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mitch777

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  • Posts: 3,586
Re: It may be time to experiment . . .
« Reply #2 on: December 17, 2012, 09:31:38 AM »
Mark,

we have similar issues.
i know how hard you have tried to deal with your lipids.
no answers or advice from me.
just wanted to wish you (and your sister) well.
32 years hiv+ (oct. 2013) with a curtsy.

Offline pozniceguy

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  • Posts: 1,181
  • Niceguy Dallas
Re: It may be time to experiment . . .
« Reply #3 on: December 17, 2012, 10:23:37 AM »
Mark  sorry to hear of the  many interacting complications....  have  some of the same issues....have been using Crestor  for more than a year  definitely helps to keep  levels  closer to where they need to be....also  get  regular  "notices "  from Insurance about generic  Lipitor   but we tried  that and Dr  keeps specifying the  Crestor...   he  specifies on the  script   Crestor  as prescribed....

good luck

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline wolfter

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  • Posts: 4,639
Re: It may be time to experiment . . .
« Reply #4 on: December 17, 2012, 11:48:28 AM »
Hope it all goes well buddy.  We're in very similar situations.  Lipitor for me was nasty and I had to discontinue it.  Pravastatin has allowed me to have awesome results.  Having 2 heart attacks before the age of 40 forced me to address the issues.

I never dreamt I'd live long enough to have HIV controlled and have the rest of me fall apart so rapidly.   :o

I did a 3 month extreme diet test after stopping pravastatin to see if my lipids would remain the same.  I eliminated ALL foods that would affect the lipids and I saw a sudden and huge change (for the worse) in my numbers.  Isentress is the culprit according to my doctor.  After restarting, I again saw a change for the better and am resigned to taking it for the rest of my life if need be.

Wishing you well
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline AlanBama

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  • Posts: 3,641
  • Alabama: the 'other' 3rd World Country!
Re: It may be time to experiment . . .
« Reply #5 on: December 19, 2012, 12:28:30 PM »
Hey Mark

If you go with Crestor, I hope it works well for you, and that the insurance will pay for it (isn't it nuts that we have to argue with them over such things?).  As for the cardiac issues, it does seem that you have a few strikes against you...but hopefully nothing you can't overcome.

Love & hugs to you, my friend...and thanks for the lovely Christmas card.

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Jody

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Re: It may be time to experiment . . .
« Reply #6 on: December 25, 2012, 04:55:57 PM »
Hi Mark, hope you are doing better and your sister as well.  I take Lipitor (generic) every other day and my numbers have been good.  Best of everything going into the new year my dear friend.

Hugs, Jody
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline deibster

  • Member
  • Posts: 155
Re: It may be time to experiment . . .
« Reply #7 on: January 03, 2013, 09:51:14 PM »
Good luck Mark. Have you, or your doc, tried calling the insurance in advance to see if you need prior authorization? My doc has been able to get the prior auth, in a few days, when needed.

In the past, I was switched from Lipitor to pravastatin, because of insurance regulations and the substitute worked. I was also switched from Flomax (for prostate BPH) to doxazosin, and that also worked.
 Hugs & happy new year. Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: It may be time to experiment . . .
« Reply #8 on: January 23, 2013, 12:34:36 AM »
Just a quick update.

I saw the doctor today. After some discussion and reviewing my lipid labs during the past couple of years, the doctor said he was reticent to prescribe a statin for me.

My lipid numbers, while they have worsened a bit over time, have not worsened that much, the doctor said.

Also, everything else is doing fine. My blood pressure ranges from a tad lower than normal to absolutely normal (120 / 80 today). My lung issues seem to be holding steady, which is a good sign, and my kidneys and liver are doing just fine.

In other words, I am in great shape, aside from the somewhat elevated lipids.

Even my CD4s are OK, coming in at more than 1,000, with a still undetectable viral load.

He said I was doing very well, except for the cholesterol, and was fearful the addition of a statin would upset the apple cart, so to speak, just as it did the last time.

The doctor said, and I quote , "I don't want to poison you with a statin."

He likes my diet, he knows I watch pretty closely what I eat.

But he does want me to exercise a bit more. I guess I can't argue with that.

So, no big news at this time. Oh, I do have get an X-ray tomorrow. I have been having pain in my left wrist and, upon examination, it appears I may have broken it.

Who knew my little fall on the ice Jan. 3 may have caused more damage, albeit minor, than I thought.

Oh well, I will get it done tomorrow.

An interesting side note: When he was examining me, he noticed one of my pupils is larger than the other. The doctor asked if I had ever suffered a head injury. I told him I did suffer a fractured skull when I was gay bashed a number of years ago.
The doctor said the attack probably caused some lingering brain damage, resulting in one pupil being larger than the other. It is of no real consequence, other than being a curiosity and a reminder of a rather unpleasant experience. But, I did find it interesting.

HUGS,

Mark
« Last Edit: January 23, 2013, 12:42:39 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline BT65

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  • Posts: 9,975
Re: It may be time to experiment . . .
« Reply #9 on: January 23, 2013, 05:41:36 PM »
God Mark, sorry to hear about your wrist.  Damn ice.  I be it's been really hurting.  I'm surprised you can function if it's broken.  Of course, sometimes sprains hurt worse than breaks, and people don't even realize something's broken.

That is interesting about your pupil.  Sorry it brought back those bad memories. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline wolfter

  • Member
  • Posts: 4,639
Re: It may be time to experiment . . .
« Reply #10 on: January 24, 2013, 01:37:22 PM »
Are we trying to compete for broken wrists?   ;D ;D  Me, you, Mike and who knows who's next.

Overall, it looks mostly like good news.  How are the results from your surgery coming along? 

luvs
Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: It may be time to experiment . . .
« Reply #11 on: January 24, 2013, 10:44:05 PM »
OK the results are in and the wrist is sprained, but not broken.

So, that is good news.

Hey Wolfie, regarding the surgery, so far, so good. No sign of it growing back yet and I seem to have healed properly.

So, that also is good news.

HUGS,

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

Offline J.R.E.

  • Member
  • Posts: 7,215
  • Joined Dec-2003 Living positive, since 1985.
Re: It may be time to experiment . . .
« Reply #12 on: January 26, 2013, 06:22:04 AM »
OK the results are in and the wrist is sprained, but not broken.

So, that is good news.

Hey Wolfie, regarding the surgery, so far, so good. No sign of it growing back yet and I seem to have healed properly.

So, that also is good news.

HUGS,



Mark

Hey Mark,

Glad to read that the wrist wasn't broken.  We don't need any more broken bones around here!

My problem always seems to be that I am smashing my feet into something !  :P  Maybe I can wrap myself up in a few layers of bubble wrap, and help prevent some injuries.  ;)



Take care of yourself--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 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline J.R.E.

  • Member
  • Posts: 7,215
  • Joined Dec-2003 Living positive, since 1985.
Re: It may be time to experiment . . .
« Reply #13 on: January 27, 2013, 06:27:02 PM »


An interesting side note: When he was examining me, he noticed one of my pupils is larger than the other. The doctor asked if I had ever suffered a head injury. I told him I did suffer a fractured skull when I was gay bashed a number of years ago.
The doctor said the attack probably caused some lingering brain damage, resulting in one pupil being larger than the other. It is of no real consequence, other than being a curiosity and a reminder of a rather unpleasant experience. But, I did find it interesting.

HUGS,

Mark


Mark,


Has this been documented on any of your eye examinations.  I was talking to Ed about this, and he says this condition is always documented ( if it exists) on all the exams he's ever done.

There might be a possibility that you were born with this condition, so see if you can go back and check some of your previous eye exams.

Oh yes, before I forget, Ed says the condition is called anisocoria :

http://www.nlm.nih.gov/medlineplus/ency/article/003314.htm


Take care---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 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Susan

  • Member
  • Posts: 9
Re: It may be time to experiment . . .
« Reply #14 on: March 17, 2013, 10:21:38 AM »
Mark, you may wish to investigate magnesium as a way to lower your cholesterol and it will also help with lots of other things (like take away all your muscular aches and pains). Magnesium is probably the best nutrient for your heart. It is my new favourite supplement. But, beware of the commonly used forms such as oxide (the one doctors give which is useless as very little is absorbed - great if you need a laxative) and citrate as they cause loose stools in many people. Some suggested forms can be found here http://gotmag.org/how-to-restore-magnesium/

« Last Edit: March 17, 2013, 10:25:39 AM by Susan »

Offline deibster

  • Member
  • Posts: 155
Re: It may be time to experiment . . .
« Reply #15 on: March 17, 2013, 05:58:10 PM »
I hope you are doing well Mark. Have you tried plain generic pravastatin? My insurance wouldn't pay for Lipitor & this alternative is inexpensive and works well for me.
Congratulations on the CD4 count. I have never had more than an 800 count; I think my lifelong allergies have effected my immune system.
Hugs, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: It may be time to experiment . . .
« Reply #16 on: March 17, 2013, 06:53:58 PM »
I am in Laughlin, Nevada, for a friends birthday. The others are gambling, I am not ( too boring).
Just an update: the doctor nixed the statin idea. He checked and I have been on four of them . I had problems with them all, even Crestor.
So, que sera sera.
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

 


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