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Author Topic: Another med change.....damn  (Read 1621 times)

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Offline wolfter

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Another med change.....damn
« on: January 16, 2015, 07:36:24 PM »
Severe insomnia dictated that we try a med change 6 months ago.  As soon as I eliminated Isentress and started Prezista and Norvir, I was able to sleep immediately.  The problem is that it never eased.  I'm in a constant state of fatigue and can easily sleep half the day away.

And almost as bad, I'm pretty sure the components of Norvir caused intestional issues similar to what I experienced on Kaletra a long time ago.  I won't go into details, but I assure it wasn't pretty.  ;)

I've also experienced some pretty bad depression and bad moods at a time when everything else in my life is looking so great.  In addition, my lipid panel was horrendous with these lab results.  I had optimal results with Lipitor for the last couple of years.

So after consulting with my doc yesterday and again discussing my terrible resistance profile, my only option is to return to the Isentress.  I already explained and he agreed that he'll prescribe a narcotic sleep aid if and when the insomnia returns.  At least when I had the insomnia, I was able to be quite productive.

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

Offline weasel

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Re: Another med change.....damn
« Reply #1 on: January 17, 2015, 10:11:10 AM »


          Do you use Trazadone ?

     I was on Prezista for 6 months , it did not go well , organ failure
     was an issue !

      I hope your new regime goes well .


                                                 Hugs , Carl
" Live and let Live "

Offline wolfter

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Re: Another med change.....damn
« Reply #2 on: January 17, 2015, 11:41:42 AM »
I was prescribed Trazadone as a sleep aid when I suffered the insomnia.  I also garnered benefits from the residual effects of what it is actually intended for.  But I had to stop it entirely after switching to this current combo.  Hell, a sleep aid would have made me sleep the entire day and night away.

I not so jokingly asked if I could switch every other day between the 2 combos and see if it balanced out.  What a decision; always wanting to sleep or never being able to sleep. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Jeff G

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  • How am I doing Beren ?
Re: Another med change.....damn
« Reply #3 on: January 17, 2015, 11:44:28 AM »
I am not familiar with your list of resistance issues but are you sure these are your only choices ?

Offline wolfter

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Re: Another med change.....damn
« Reply #4 on: January 17, 2015, 11:52:45 AM »
Yeah Jeff, I'm in that category of people who took all the early combos and quit them after getting well due to the horrid issues.  It now has left me very few options.  But even the combo I'm switching back to is much better than what I experienced in the past.

At least this combo doesn't F**K with my sanity (which I had little to start with ;) )
And as long as he prescribes something strong enough to assist with sleep, I think I can tolerate it until like he said; "something better comes along".  Good God, that's been a life long motto.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Jeff G

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Re: Another med change.....damn
« Reply #5 on: January 17, 2015, 11:58:20 AM »
Can you take non nukes like Intelence ?

Offline wolfter

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Re: Another med change.....damn
« Reply #6 on: January 17, 2015, 12:00:40 PM »
Can you take non nukes like Intelence ?

I already take Intelence along with Truvada.  In addition, I have to either take Isentress or Prezista and Norvir.  I doubt I'll ever see a once a day pill.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Jeff G

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Re: Another med change.....damn
« Reply #7 on: January 17, 2015, 12:02:14 PM »
I think your virus is unreasonable and hard to get along with .

Offline wolfter

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Re: Another med change.....damn
« Reply #8 on: January 17, 2015, 12:03:22 PM »
I think your virus is unreasonable and hard to get along with .

Just like me, it's virulent SOB.   LOL

Edited to add: I wonder if just knowing new meds are coming is already making a difference.  I feel so much better today than I have in a while.  Perhaps it's all in my head? :o
« Last Edit: January 17, 2015, 12:08:30 PM by wolfter »
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

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Re: Another med change.....damn
« Reply #9 on: January 17, 2015, 12:25:14 PM »
You may want to discuss Rozerem sleep aid with your doctor -- it's not a narcotic and works off your body's natural circadian rhythms: http://www.rozerem.com/en/?
"Iíve slept with enough men to know that Iím not gay"

Offline wolfter

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Re: Another med change.....damn
« Reply #10 on: January 17, 2015, 12:31:45 PM »
You may want to discuss Rozerem sleep aid with your doctor -- it's not a narcotic and works off your body's natural circadian rhythms: http://www.rozerem.com/en/?

Thanks for the link.  He already knows that I'm adament about a sleep aid.  Using alcohol as a sleep aid isn't really productive and I explained that I was doing so most nights simply to fall asleep. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

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Re: Another med change.....damn
« Reply #11 on: January 17, 2015, 01:09:30 PM »
For some reason alcohol actually makes my sleep worse, if I have in excess of 3 servings.
"Iíve slept with enough men to know that Iím not gay"

Offline Tonny2

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Re: Another med change.....damn
« Reply #12 on: January 17, 2015, 02:12:35 PM »
I already take Intelence along with Truvada.  In addition, I have to either take Isentress or Prezista and Norvir.  I doubt I'll ever see a once a day pill.

      ojo    Hi wolfter...I like you, have resistance issues, in fact, the combo I'm taking, its the only combo that works for me (prezista/norvir, intelence, isentress), I do have insomnia issues too, I take ambien cr 12.5, tho, I use it aeound 10 days at a time, so my sleep cycle gets on, it helps...right now, I'm not using it, cause am sleeping as if I didn't owe money, lol, like a baby...I wish you luck with your zzzzz...hugs     ojo

Offline buginme2

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Re: Another med change.....damn
« Reply #13 on: January 17, 2015, 03:08:10 PM »
I already take Intelence along with Truvada.  In addition, I have to either take Isentress or Prezista and Norvir

What about tivicay (dolutegravir)?  If you can take issentress you should be able to take dolutegravir.  It has less side effects than issentress so it may help.
Don't be fancy, just get dancey

Offline wolfter

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Re: Another med change.....damn
« Reply #14 on: January 18, 2015, 01:25:38 PM »
He specifically checked about Tivicay and said it wasn't an option.  I'm on so many meds because I need specific components of each.  I don't even pretend to understand the different components of each med and whole heartedly trust my doctor.

But once again, it is what it is and I'll plunge through.  I've done so well without needing alcohol for medicinal purposes (it should be recreational only ;)  )that I hope we come up with an alternative.  I absolutely know that alcohol induced sleep prevents a REM state which means you're not truly getting adequate sleep.

thanks for the input all
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline wolfter

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Re: Another med change.....damn
« Reply #15 on: January 18, 2015, 09:36:56 PM »
In addition, I'm supposed to return to the bone specialist next week.  I discussed with my GS doctor why I'm not doing so.  I never rec'd an adequate answer as to why we're not testing if my current bone drugs are helping.  After 18 month on Boniva, I would think it's prudent to see the difference.  The high priced specialist in Columbus just discard my obvious points. 

they simply state that since I have broken bones since starting, it must be a failure.  If you read about that drug, it doesn't even start working until after being on it a year. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline buginme2

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Re: Another med change.....damn
« Reply #16 on: January 18, 2015, 10:26:06 PM »
With your bone issues ask your hiv doctor if and wen you can change tenofovir to the new improved tenofovir TAF.  It's supposed to have less bone issues and shouldn't matter on the resistance front since it's the same med just a different formulation. 

The bone issues worry me.  It's one of the reasons I ditched tenofovir and switched to triumeq. 

After hearing about you and Betty I was more aggressive about dropping it.
Don't be fancy, just get dancey

Offline wolfter

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Re: Another med change.....damn
« Reply #17 on: January 19, 2015, 11:02:20 AM »
My doctor is going to follow up with the specialist as he agrees that another bone density scan should be done to see if there is any improvement on the current Boniva drug.  The specialist suggested 2 different options and I don't like the preferred one. 

I could switch to an every 6 month injection of Prolia.  Which they don't think will be adequate given the severity of my bone loss.  They are pushing towards Forteo which is a daily injection.  I really don't look forward to learning to inject myself daily. 

Plus, it'd be a daily reminder of just how frail I've become....   lol
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline wolfter

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Re: Another med change.....damn
« Reply #18 on: January 23, 2015, 01:53:32 PM »
I thought I would have to wait a month to start the new meds in order to stockpile a buffer.  Thanks to the graciousness of a member here, I can go ahead and start them tomorrow since he sent me a 60 day supply.

How awesome are the great folks here.  Not sure if he'd appreciate public accolades so I'll just announce a grand THANK YOU instead.  I really do appreciate it.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline leatherman

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Re: Another med change.....damn
« Reply #19 on: January 23, 2015, 09:04:58 PM »
kudos for planning to make a stockpile  ;)
bigger kudos to your benefactor!  :-*

and best wishes on the med change!
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline wolfter

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Re: Another med change.....damn
« Reply #20 on: January 25, 2015, 07:54:48 PM »
So I'm off the Prezista and Norvir for 3 days now.  I really should have posted this is the questions about treatments section.  It's absolutely frightful how a few days of a med change can make.

I didn't relay my dreadful experiences with that added combo which is typical for me.  I was on norvir once before and really should have thought that through but the insomnia was so horrible that I too readily accepted any change. 

I don't suggest that these drug are horrid any in regards but I absolutely know what they did to my mental health.  I never relayed that I was sinking back to a dark abyss with those thoughts of impending doom and gloom.

I was also fortunate that I had people around me who recognized and drew my attention to it.  I again developed a "why bother"  mentality and barely made it through the motions. 

For me, sustiva and norvir will never be part of my being.  They both f'd with me with the difference this time being a doctor who worked with me and recognized it.  I was again so convinced that dementia was settling in.  2 dr appointments ago, I could tell my doc had a worried look about him.  I think he purposely wanted to check my ankles to draw my attention to the fact that I was wearing 2 different shoes.  True story.   
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline initforlife

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Re: Another med change.....damn
« Reply #21 on: January 25, 2015, 08:01:12 PM »
Hmmm so you think norvir made your mind go blank and kept you depressed? I know I have what y'all call brain fog and hard time finding my words a lot. but not so much when I stop taking my meds..I wish they could find something for me that doesn't hit me so hard mind and other wise.
sometimes it is best to say nothing at all. then to offend

Offline Tonny2

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Re: Another med change.....damn
« Reply #22 on: January 25, 2015, 08:41:16 PM »
So I'm off the Prezista and Norvir for 3 days now.  I really should have posted this is the questions about treatments section.  It's absolutely frightful how a few days of a med change can make.

I didn't relay my dreadful experiences with that added combo which is typical for me.  I was on norvir once before and really should have thought that through but the insomnia was so horrible that I too readily accepted any change. 

I don't suggest that these drug are horrid any in regards but I absolutely know what they did to my mental health.  I never relayed that I was sinking back to a dark abyss with those thoughts of impending doom and gloom.

I was also fortunate that I had people around me who recognized and drew my attention to it.  I again developed a "why bother"  mentality and barely made it through the motions. 

For me, sustiva and norvir will never be part of my being.  They both f'd with me with the difference this time being a doctor who worked with me and recognized it.  I was again so convinced that dementia was settling in.  2 dr appointments ago, I could tell my doc had a worried look about him.  I think he purposely wanted to check my ankles to draw my attention to the fact that I was wearing 2 different shoes.  True story.   

     ojo     Hi wolfter...I'VE BEEN TAKING pREZISTA AND nORVIR POR EIGHT YEAR, NEVER HAD A PROBLEM, AS A MATTER OF FACT, I've BEEN TAKING nORVIR SINCE IT CAME OUT TO THE MARKET ON A LIQUID FORM, ARGH, IT TASTED HORRIBLE, AND I NEVER NOTICED ANY OF THE PROBLEMS YOU MENTIONED...I KNOW EVERYBODY IS DIFFERENT, WOULD YOU MIND TELLING ME, HOW LONG HAVE YOU HAD hiv?...THE SHOES THING, HAPPENED TO ME ONCE TOO, BUT, BECAUSE OF MY BLINDNESS, I HAD THE LEFTONE ON THE RIGHT FOOT AND VICEVERSA, I DIDN'T NOTICE IT, BECAUSE OF MY NEROPATHY, LOL...hugs     ojo

Offline wolfter

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Re: Another med change.....damn
« Reply #23 on: January 26, 2015, 08:42:38 AM »
That's awesome that you've never had an issue with this combo hence is why I prefaced that these aren't awful drugs just my individual experience with them.  I've taken different combos throughout my 20+ years and simply need to settle for the one that I can tolerate best with the least issues.

I'm returning to my previous combo as I'd rather deal with insomnia than what I've been dealing with lately.  I've noticed a huge improvement in such a short time.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline wolfter

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Re: Another med change.....damn
« Reply #24 on: January 27, 2015, 12:07:35 PM »
I'm so freaking content switching back to this combo.  Insomnia has not kicked in yet and I hope it's not a self fulfilling prophecy.  IIRC, it took quite a while before I experienced insomnia when I first started this combo.  So maybe I'll have some much needed relief for a while while I wait on the next drug breakthrough.

Now I'm simply trying to get everything sorted out with Humana's mail order pharmacy.  Of course, my meds all require prior authorization.  I also stopped at my local pharmacy yesterday to update my insurance information and have my final script of Boniva filled.  YEP, it also requires prior authorization.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline BT65

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Re: Another med change.....damn
« Reply #25 on: January 27, 2015, 05:05:26 PM »
I'm glad it's going good Greg.  I can so relate to getting a combo with whatever side effects are the most tolerable.  I hope it continues to improve!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline wolfter

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Re: Another med change.....damn
« Reply #26 on: February 02, 2015, 05:13:04 PM »
If only I could get this shit straightened out with Humana.  According to them, they don't have my scripts yet. 

I emailed my doctor this morning instead of calling his office.  I was shocked when I rec'd a response so quickly indicating he would contact Tracy to determine what is happening.  He said he has limited internet since he and his hubby are on a cruise.

I'm so impressed, even on vacation he takes the time to promptly respond.  But I won't bother him again.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline wolfter

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Re: Another med change.....damn
« Reply #27 on: February 03, 2015, 11:15:06 AM »
I was reminded this morning of a conversation I had with my director of nursing years ago.  I had planned on med school but this virus cut that short.  I settled for nursing school and I commented to her that I was only an LPN.  She quickly chastised me and said that wasn't an indication of my intelligence or ability.

Well, my beloved doctor's primary office nurse is only an LPN and she's an idiot.  After 6 weeks I discovered this morning that she's the reason my meds aren't on schedule to be delivered.  She called me to say that she again faxed my script for Isentress to the pharmacy.  I said fine, what about the others.  She was dumbfounded and inquired if those needed sent also.

When I discovered that I was being switched to Humana in early December, I immediately notified my doctor's office.  As soon as I rec'd my insurance card, I copied both sides and faxed that to them.  I included a detailed account of wanting to be ahead of the game .

It's probably a good thing that my doctor is on vacation as I want to send a scathing email detailing how much of an idiot she is.  This isn't the first issue I've had with her but I've overlooked it.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline wolfter

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Re: Another med change.....damn
« Reply #28 on: March 18, 2015, 03:42:45 PM »
My doctor sent me a lab script as he wanted to verify that my numbers remained decent after switching around my meds.

Rec'd notification from LabCorp that they were ready to be viewed.  I hit my highest number to date.  They climbed so slowly and now appear to kicking ass.  I so remember the first time I hit triple digits and being elated.  And now I hit 846 and also my highest percentage yet; 28.2%.  That's almost normal.  I ran with that figure also being in single digits forever. 

On the downside, I've hit my highest weight ever.  Others say how great I look but pushing 160 just doesn't work for me.  I've gained 20lbs since being back with Greg and am not liking it!!!!  But I plan on loosing it slowly and correctly and am not looking to hit the below 140 mark any longer. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Tonny2

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Re: Another med change.....damn
« Reply #29 on: March 18, 2015, 04:25:18 PM »


       ojo     Hello Congratulations, those are great numbers...hugs      ojo

Offline leatherman

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Re: Another med change.....damn
« Reply #30 on: March 19, 2015, 03:32:09 PM »
And now I hit 846 and also my highest percentage yet; 28.2%.  That's almost normal.  I ran with that figure also being in single digits forever.
nice!  ;D

I finally (after 5 yrs) got this SC doctor to just be happy that my cd4s remain a little above 300. He always harps about it like there was something I could do  about it. sheesh :) but finally he gets that I'm staying just fine and dandy with these 312-ish cd4s. I try not to pay attention to my percentage though because it's always so close to aidsy (down from 20 to 17 this time. it'll be back up next time probably, it the pattern continues LOL)

But I plan on loosing it slowly and correctly and am not looking to hit the below 140 mark any longer. 
ah! but if your cd4 and % drop with the weight, what will you do??
LOL Maybe 160 is the right weight for an old married man.  :P ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline wolfter

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Re: Another med change.....damn
« Reply #31 on: Today at 01:30:56 AM »

ah! but if your cd4 and % drop with the weight, what will you do??
LOL Maybe 160 is the right weight for an old married man.  :P ;D

I read this several times before getting it.  :)  I'm back down to the low 150's and I'll settle for the upper 140's.  I don't you think you and my boyfriend realized I was sitting at the table when discussing my size. 

But it does bring up another point I've always questioned?  Why does someone who weighs a lot get prescribed the same dosage as someone the size of a large doe? 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

 


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