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Author Topic: There may be a change in the works  (Read 3228 times)

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Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
There may be a change in the works
« on: October 19, 2013, 04:01:29 AM »
OK, as I mentioned in the earlier thread about my pretty good labs, my CPKs were elevated.

Well, I have been experiencing some issues, mainly general pain in my muscles. It is not rhabdomyolysis, like I was experiencing when on statins, but a general myalgia.

It wouldn't be too bad, were it not for the cramping of my muscles all over the old bod, including in my torso and sides, which are hard to stretch out when they cramp.

The doctor, bless him, decided I may need to switch my Isentress for a new med. Of course, the choices are rather slim at this point.

He was looking at either Complera or Stribild.

He actually gave me a script for Complera, but, I am hesitant. I have done a bit of research and found out you cannot take it with a proton pump inhibitor. I take one of those, the generic of Protonix, for GERD. This is the reason I switched from Reyataz a number of years ago.

Hmmm.

Stribild sounds OK, from what I have read. It still states it is only for treatment naive people, which I'm not, but I know others are switching to it who aren't new to meds.

But, the main reason for switching is the elevated CPKs. But, both Complera and Stribild can cause elevated CPKs.

I did a bit more research and found that not only does Isentress also cause this in some people, so does Truvada.

Hmmm, the plot is thickening here.

I am not sure I am ready to switch from Isentress. It has been, aside from the CPKs, pretty benign and easy to take.

I think I will go talk to the doc next week and we can hash out what we might want to try, or, rather, what I might want to try.

I have managed to keep my kidneys in good shape by drinking lots of fluids, keeping them flushed. That is one of the issues that arises with elevated CPKs.

So, maybe I will just continue with the status quo.

I guess we'll see.

HUGS,

Mark
« Last Edit: October 19, 2013, 04:04:54 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline BT65

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Re: There may be a change in the works
« Reply #1 on: October 19, 2013, 01:45:41 PM »
Mark, I can't even imagine getting cramps in my torso and sides.  That sounds absolutely awful!  I don't know how you do it, with working and trying to keep things under some control with all that cramping going on. 

I've been on Stribild for probably about 7 or 8 months, and I'm certainly not treatment naive, having been on something since around '90 or '91.  Those are your only options regarding switching meds?  If that's the case, I guess I would take the one with the least issues.  I don't know how you can weigh that out, but maybe your doctor can assist with that.

I'm thinking of you, Mark, and wishing you the best.

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Theyer

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Re: There may be a change in the works
« Reply #2 on: October 20, 2013, 07:43:28 AM »
One thing after another a Mark , these cramps sound very differcult. My present statin regime off Ezetmibe 10 Mg and Atorvastatin 10 mg bedtime it took awhile to find the balance off dosage re leg aches but as my overall strength got better I notice the pains less , however as soon as I am poorly I find I am bothered by at its worse toxic bones.

I have cause to be very gratefull to the pharmacists at the hospital who have the role off checking out drug interactions. It seems impossible to now perscribe me a drug that does not red light a drug I am taking . As Betty notes its often the least worse choice then being very attentive when taking the drug.

Do you have access to such a system without a whopping cost? The pharmacists seem to really enjoy doing it to.

Anyway good luck with it all dear heart
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline mitch777

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Re: There may be a change in the works
« Reply #3 on: October 20, 2013, 11:26:24 AM »
Mark,

Sorry to hear such distressing news. Wish I had some suggestion that would help. Hope you are able to figure out something that brings you relief.

Hugs,
Mark
32 years hiv+ (oct. 2013) with a curtsy.

Offline Jeff G

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Re: There may be a change in the works
« Reply #4 on: October 20, 2013, 09:49:43 PM »
The body cramps in the torso are horrible . I also get them in my neck/throat sometime  and it will stay sore for days afterwards . The worst is in my chest and back , if it happens in the car its almost impossible to stretch it out and I have stop and get out of the car to walk if off .

Im wishing you the best and hope it gets sorted out . I wish I knew what caused those cramps so that I could do something about them . 

Offline bear60

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Re: There may be a change in the works
« Reply #5 on: October 25, 2013, 02:15:57 PM »
You are absolutely right about COMPLERA.  It clearly states in the literature that you cannot take a proton pump with it.  Why cant doctors read!!!!!!!
Poz Bear Type in Philadelphia

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: There may be a change in the works
« Reply #6 on: October 28, 2013, 12:22:20 AM »
I am trying something this week.

I am substituting Zantac for my Protonix. We'll see how it works. If memory serves, I tried this before, and wasn't too happy. But, I could be wrong. I have tried so many things.

I am still taking the Isentress/Truvada for the time being, until I see how the Zantac works.

If it is OK, I will try Complera. If not, I will just stick with the Isentress.

Interestingly, I did more research and found that elevated CPKs, and the corresponding muscle aches, could also be caused by Truvada.

Oh shaw.

I had some interesting news when I picked up my med refills last Saturday. The coupon for my Isentress is expired, so I had to pay a $60 copay for it.

But even more disturbing. the copay for the Niaspan, which started out at $20, then went to $40, is also now $60.

The pharmacist told me the drug companies are starting the jack up the prices of some of the older generics, especially those made only by one or two companies. It seems they now feel, with the advent of the ACA, there will be a payor source for everyone and somebody will pay the increased cost.

I guess that someone is us. My copays Saturday totaled $231 for a month's supply of my various meds.

OUCH!

I will be talking to the doctor about it this week. (Handy seeing the doctor weekly, even if it is for other people).

I may try to switch to over the counter niacin. I also will get another coupon for Isentress, just in case I stay on it. I already got one for Complera, again, just in case.

You gotta do what you gotta do.

HUGS,

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

Offline Theyer

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Re: There may be a change in the works
« Reply #7 on: October 29, 2013, 05:22:11 AM »
Good luck Mark. I have certainly re tried drugs that did not fit first time around well worth the effort.

Mark has there ever been any work in an aids group negotiating drug prices that it then sell on < Or / and Med Co-OPs ?
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline CandyO

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Re: There may be a change in the works
« Reply #8 on: October 29, 2013, 09:50:00 PM »
Hi Mark.My husband takes prilosec.He also takes truvada and isentress and the prilosec has worked well.
Praying for you
Susan

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: There may be a change in the works
« Reply #9 on: October 29, 2013, 11:15:17 PM »
The doctor went along with my idea of trying the OTC niacin, especially when I mentioned the copay had tripled in a year.

I have started the Zantec. So far, so good.

Everyone keep their fingers, toes or eyes crossed.  ;D

HUGS,

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

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: There may be a change in the works
« Reply #10 on: November 01, 2013, 12:18:18 AM »
Day three of the Zantac.

Not so good. I am having to take the maximum two a day just to stay somewhat comfortable.

I will give it another day or so, but I have my doubts about whether this is going to work.

HUGS,

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

Offline Theyer

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Re: There may be a change in the works
« Reply #11 on: November 02, 2013, 07:31:58 AM »
Mark ,


"somewhat comfortable " is not good enough , though does not the Zantac take a period to reach maximun effectiveness ?I am sorry you having these troubles and lets hope with further experimentation they can be a thing off the Past.
Great big Hug to you.
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: There may be a change in the works
« Reply #12 on: November 02, 2013, 07:00:37 PM »
Well, that experiment was a failure.
Things proceeded to get worse, bad enough, in fact, that I had to sleep sitting up to prevent acid reflux from causing more problems.

So, I am back on the Protonix, and it is beginning to kick in. It takes a couple of days before being fully effective

I also will stay with the Isentress. I have learned to live with the aches and cramps, aside from those that cause me to bolt out of bed in the middle of the night.

I am going to try quinine to see if it will help. Of course, you can't buy quinine any more, at least in the U.S., so I have to buy tonic water (diet, to keep me from ballooning).

Hmmm, since I have the tonic water, I may as well buy some gin to go with it.

Couldn't hurt.  8)

HUGS,

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

Offline mitch777

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Re: There may be a change in the works
« Reply #13 on: November 02, 2013, 08:37:44 PM »
boo. :(
are you eating too many red chilis?
32 years hiv+ (oct. 2013) with a curtsy.

Offline aztecan

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  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: There may be a change in the works
« Reply #14 on: November 03, 2013, 10:55:16 AM »
boo. :(
are you eating too many red chilis?

I prefer green chile, myself. Red is OK, but I have green chile daily, most of the time.

Oh, and you can never get too much!  ;D

HUGS,

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

Offline Miss Philicia

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Re: There may be a change in the works
« Reply #15 on: November 03, 2013, 11:23:22 AM »
Neuromuscular and myopathic conditions are not uncommon for those of us infected for a long time, regardless of how intact our immune systems have become from HAART. Since my recent back pain wasn't due to disc issues we expect I am developing something similar, and of course many of us have arthritis in the mix.

I definitely agree that it's absolutely amazing that Mark manages to work full time with this issue.
"I’ve slept with enough men to know that I’m not gay"

Offline AlanBama

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Re: There may be a change in the works
« Reply #16 on: November 04, 2013, 02:31:59 PM »
I agree with Miss P, Mark it is really miraculous that you are able to work FULL TIME.  You are a tough guy!  My partner's been having major body aches and almost flu-like soreness and stiffness....probably due to Isentress.

The gin and tonic sounds like a GREAT idea, to me!

HUGS, Alan

PS reminds me of an old drag queen from Atlanta, named "Ginny Tonic"....
"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 guitargal

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Re: There may be a change in the works
« Reply #17 on: December 01, 2013, 01:28:01 PM »
hi, just want to let you know i have had really bad muscle cramps.flying out of bed almost crying....leg weakness and knee pain.

not to scare you but it got worse for me…..because my doc took me off hiv meds "to see if  the pain  would get better"

little did i know that was totally wrong! VL > to 21, 000 from UD and i got totally worse..the fatigue and pain incredible..

when i went back on meds, all hell broke loose as i went UD in a week or so thinking IRIS...and now i have full body pain..2 years and going to doc after doc..

that said i thought it was the tenofovir.did a year with out it in my cocktail and didn't solve anything.... well i am on stribild now and uD with a cd in the 900's.

pm me if you want..i am desperate to find relief and get my life back..i would gladly go back t the "discomfort " i had back then as compared to this totally disabling problem that no one can diagnose  or treat.

still in search of answers and treatment for this pain .. describe a type of pain and i have it. sharp, bruised, throbbing, stabbing , tight…sometimes like an attack when it starts after exertion(cooking, laundry bath driving to doc) like someone is cutting my muscle from my shin bone..

ughhhhhhhh

took all the meds since 1992! and i am 52

Offline Sphinx

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Re: There may be a change in the works
« Reply #18 on: December 16, 2013, 10:31:27 PM »
If helpful to your cause, I have been having increasing muscle pain when getting up from stationary position for months. After months of testing To make a very long story shorter, I am changing out my Truvada for Tivicay.

Offline guitargal

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Re: There may be a change in the works
« Reply #19 on: February 08, 2014, 08:54:05 PM »
how are you feeling off the truvada?

 


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