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Author Topic: Biktarvy and Health Issues  (Read 1834 times)

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Offline Mac2016

  • Member
  • Posts: 43
Biktarvy and Health Issues
« on: January 17, 2020, 12:45:31 pm »
Hi Everyone,

It's been over 3 years since my last entry. Things have been going great. Except, a week before this past Thanksgiving, I had a heart attack. Now, I'm having severe leg pains which have really debilitated me. I've never had heart issues or trouble with my legs before.

I started Biktarvy in March of 2019. I was previously on Triumeq. My current provider seemed to have REALLY pushed me to go on Biktarvy. I was doing fine on the Triumeq.

My provider (nurse practitioner) now won't answer my calls or emails. I want to either go back to Triumeq....or the newer Dovato. She knows this. Do they get kick backs for pushing certain meds?

I have an appointment next week with someone new.

It's my belief that Biktarvy is severely messing with me. I never had heart issues before, my legs were fine a month ago. This really stinks.

Anyone else having unexplained difficulties??
« Last Edit: January 17, 2020, 01:15:18 pm by Mac2016 »
12/2010  Diagnosed. CD-4 - 57  Viral Load - in the hundreds of thousands.

2011 - 2015 No Meds (BIG Mistake)

  5/2015  CD-4  26                 VL  400,000
  6/2015   Started Triumeq
  7/2015   CD-4   81               VL  351
  7/2015   Diagnosed with KS...Reality Sets In.
  8/2015   CD-4   88               VL   96
  9/2015   CD-4  136              VL   59
11/2015   CD-4  143              VL   79
01/2016   CD-4  123              VL   22
(Ran a fever after surgery??)

Offline Texland

  • Member
  • Posts: 28
Re: Biktarvy and Health Issues
« Reply #1 on: January 17, 2020, 02:03:27 pm »
Go see a doctor! After a heart attack they should have run a scan to check for blood clots or other obstructions in your arteries. If not, ask about getting a "heart saver" or calcium scoring scan. You may need to be referred to a cardiologist or vascular specialist. There's too many possibilities to leave to a nurse practitioner.

As far as doctors and what meds they choose? They seem to either prescribe everything from Gilead or Viiv (Pfizer-GSK). I don't know if they actually get kickbacks. My previous two doctors only ever prescribed HIV med made by Gilead to me. The one time I asked taking about one made by a competing company, it was quickly shot down.

Offline Jim Allen

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  • Twitter @JimAllenDublin
    • HIV Lessons
Re: Biktarvy and Health Issues
« Reply #2 on: January 17, 2020, 02:39:05 pm »
Heart attack, that truly sucks and sorry to hear that.

Surly your doctor reviewed your meds after your heart attack? Anyhow regarding this recent episode of severe leg pains go to ER if needed and like Texland says you need to see a cardiologist as well.

Jim
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
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You can read about HIV prevention here:
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PEP and PrEP

Offline Mac2016

  • Member
  • Posts: 43
Re: Biktarvy and Health Issues
« Reply #3 on: January 17, 2020, 05:27:37 pm »
Texland & Jim,

Thanks for responding! Yes, I have a cardiologist. Thankfully, I don't have any clots. They checked before the stent insertion. I was thoroughly checked out after I got discharged. I had to come back for a follow up.

Maybe I just need exercise. I feel like a slug. But, I definitely want an anti-viral change. I don't like what I hear about Biktarvy.....or I'm just being paranoid after the heart attack!

I'll keep you posted! Thanks again!
12/2010  Diagnosed. CD-4 - 57  Viral Load - in the hundreds of thousands.

2011 - 2015 No Meds (BIG Mistake)

  5/2015  CD-4  26                 VL  400,000
  6/2015   Started Triumeq
  7/2015   CD-4   81               VL  351
  7/2015   Diagnosed with KS...Reality Sets In.
  8/2015   CD-4   88               VL   96
  9/2015   CD-4  136              VL   59
11/2015   CD-4  143              VL   79
01/2016   CD-4  123              VL   22
(Ran a fever after surgery??)

Offline Bhall4

  • Member
  • Posts: 52
Re: Biktarvy and Health Issues
« Reply #4 on: January 20, 2020, 05:43:44 pm »
I canít say providers get compensation for pushing a certain medicine (personal experience). Perhaps they push based on research and recommendations. I, also, understand and respect your consideration/wants in your care. As long as everything is good why change? That of course would be a conversation you/your provider have.

Iím lucky to say i have had no negative side effects thus far on Biktarvy and it seems to be working well for me. Other than recently having the flu :/

Offline JosephP

  • Member
  • Posts: 318
  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Biktarvy and Health Issues
« Reply #5 on: January 20, 2020, 10:54:37 pm »
Mac, like Texland and Jim I urge you to stay in permanent contact with your cardiologist and, if possible, get a new ID doctor. As far as compensation for pushing specific drugs, I don't know. I have been on Gilead's boat since my first pill and I haven't had any problems so far.

Good luck!
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline Mac2016

  • Member
  • Posts: 43
Re: Biktarvy and Health Issues
« Reply #6 on: January 21, 2020, 08:39:38 am »
JosephP and Bhall4,

Thanks for responding. I have an appointment today with a new provider. Maybe, I'm panicking, but, I haven't felt the same since going off Triumeq. I can't lose weight no matter what I do. I try living an active lifestyle.....but no luck. 2 years ago, I went on a diet and the weight was melting off. Same diet now....nothing. My joints are stiff, I have to walk with a cane. I thought it was the statin....nope. It all points to Biktarvy.

Sorry for the complaints. But, I shouldn't feel this old at 62. I don't drink, smoke or take recreational drugs. I'm like a poster-boy (man) for an unhealthy lifestyle...LOL!! WTF!! Maybe I should drink smoke and take recreational drugs....I'd feel better.

All kidding aside. My dentist told me to accept old age. No way!! I'll defy it until my last breath.
12/2010  Diagnosed. CD-4 - 57  Viral Load - in the hundreds of thousands.

2011 - 2015 No Meds (BIG Mistake)

  5/2015  CD-4  26                 VL  400,000
  6/2015   Started Triumeq
  7/2015   CD-4   81               VL  351
  7/2015   Diagnosed with KS...Reality Sets In.
  8/2015   CD-4   88               VL   96
  9/2015   CD-4  136              VL   59
11/2015   CD-4  143              VL   79
01/2016   CD-4  123              VL   22
(Ran a fever after surgery??)

Offline Mac2016

  • Member
  • Posts: 43
Re: Biktarvy and Health Issues
« Reply #7 on: January 21, 2020, 03:53:12 pm »
Well folks, I had my appointment with my "new" provider.

She said HIV wasn't her specialty (why didn't they tell me that when I made the appointment) she took a $20 copay to tell me she couldn't treat me. She said that the provider I'm having an issue with is the best in their field.(part of the same medical community...beginning with W and ending in N.  I said that's all well and good....but when they don't call you when you're having medication issues....that isn't a good provider. She just shrugged. I knew she wasn't going to help.

She also berated me for complaining about Biktarvy, because 20 years ago medications were worse. I should feel lucky I'm not having uncontrollable diarrhea. What a stupid thing to say.

It was a useless appointment and a waste of $20. I can either go an hour away at a teaching hospital, or 45 minutes to an outpatient clinic. This clinic is only 5 minutes away.

This is a nurse practitioner that I'm having ongoing issues with. There are no real doctors.

Honestly, I'm not a problem patient. I haven't had labs done since April when I started Biktarvy. We don't even know if it's working. I had no heart issues before taking it, no leg pains, I was working out twice a week. Now, I can't even walk.

12/2010  Diagnosed. CD-4 - 57  Viral Load - in the hundreds of thousands.

2011 - 2015 No Meds (BIG Mistake)

  5/2015  CD-4  26                 VL  400,000
  6/2015   Started Triumeq
  7/2015   CD-4   81               VL  351
  7/2015   Diagnosed with KS...Reality Sets In.
  8/2015   CD-4   88               VL   96
  9/2015   CD-4  136              VL   59
11/2015   CD-4  143              VL   79
01/2016   CD-4  123              VL   22
(Ran a fever after surgery??)

Offline Bhall4

  • Member
  • Posts: 52
Re: Biktarvy and Health Issues
« Reply #8 on: January 21, 2020, 06:36:41 pm »
Well folks, I had my appointment with my "new" provider.

She said HIV wasn't her specialty (why didn't they tell me that when I made the appointment) she took a $20 copay to tell me she couldn't treat me. She said that the provider I'm having an issue with is the best in their field.(part of the same medical community...beginning with W and ending in N.  I said that's all well and good....but when they don't call you when you're having medication issues....that isn't a good provider. She just shrugged. I knew she wasn't going to help.

She also berated me for complaining about Biktarvy, because 20 years ago medications were worse. I should feel lucky I'm not having uncontrollable diarrhea. What a stupid thing to say.

It was a useless appointment and a waste of $20. I can either go an hour away at a teaching hospital, or 45 minutes to an outpatient clinic. This clinic is only 5 minutes away.

This is a nurse practitioner that I'm having ongoing issues with. There are no real doctors.

Honestly, I'm not a problem patient. I haven't had labs done since April when I started Biktarvy. We don't even know if it's working. I had no heart issues before taking it, no leg pains, I was working out twice a week. Now, I can't even walk.

Hmmm thatís not a good experience.... but I promise not all nurse practitionerís are bad.  If I was you and felt as though that the care i received... I would travel to where I was comfortable with the care.   I am driving about 2 hours to my provider, who is not a doctor!

Offline Mac2016

  • Member
  • Posts: 43
Re: Biktarvy and Health Issues
« Reply #9 on: January 21, 2020, 08:16:21 pm »
Thanks Bhall4,

You're right. Stuff happens. My NP got in contact with me. Hopefully, I can set something up and hash things out with her.

Life can get so complicated. I also hate feeling helpless with the health care system.

Thanks for responding!!
12/2010  Diagnosed. CD-4 - 57  Viral Load - in the hundreds of thousands.

2011 - 2015 No Meds (BIG Mistake)

  5/2015  CD-4  26                 VL  400,000
  6/2015   Started Triumeq
  7/2015   CD-4   81               VL  351
  7/2015   Diagnosed with KS...Reality Sets In.
  8/2015   CD-4   88               VL   96
  9/2015   CD-4  136              VL   59
11/2015   CD-4  143              VL   79
01/2016   CD-4  123              VL   22
(Ran a fever after surgery??)

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 15,987
  • Twitter @JimAllenDublin
    • HIV Lessons
Re: Biktarvy and Health Issues
« Reply #10 on: January 21, 2020, 08:20:49 pm »
I wrote and rewrote this, ill opt it keep in short.

Quote
I can either go an hour away at a teaching hospital, or 45 minutes to an outpatient clinic.

So, this sounds like solid options at least would be for me. So what are the barriers you are facing to doing this? Is it the travel time or transport perhaps?

Jim

HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Bhall4

  • Member
  • Posts: 52
Re: Biktarvy and Health Issues
« Reply #11 on: January 21, 2020, 08:27:04 pm »
Hmmm thatís not a good experience.... but I promise not all nurse practitionerís are bad.  If I was you and felt as though that the care i received... I would travel to where I was comfortable with the care.   I am driving about 2 hours to my provider, who is not a doctor!

**3 hours not 2.

Offline Bhall4

  • Member
  • Posts: 52
Re: Biktarvy and Health Issues
« Reply #12 on: January 21, 2020, 09:40:28 pm »
Thanks Bhall4,

You're right. Stuff happens. My NP got in contact with me. Hopefully, I can set something up and hash things out with her.

Life can get so complicated. I also hate feeling helpless with the health care system.

Thanks for responding!!

Great hopefully it all works out for the best!!

Offline Mac2016

  • Member
  • Posts: 43
Re: Biktarvy and Health Issues
« Reply #13 on: January 21, 2020, 10:48:18 pm »
Jim!!

Yeah, when it comes down to it....neither is that bad! Bhall4 has a 3 hour drive. I canít imagine that. I guess Iím a bit spoiled. Also, I only go twice a year for follow ups. No big deal.

Bhall4, thanks for the well wishes. I need to start being thankful for the resources that I have available. Tomorrow, Iím doing a long walk to work out some of those pains. I want to go back to the gym soon. No more complaints!! LOL!
12/2010  Diagnosed. CD-4 - 57  Viral Load - in the hundreds of thousands.

2011 - 2015 No Meds (BIG Mistake)

  5/2015  CD-4  26                 VL  400,000
  6/2015   Started Triumeq
  7/2015   CD-4   81               VL  351
  7/2015   Diagnosed with KS...Reality Sets In.
  8/2015   CD-4   88               VL   96
  9/2015   CD-4  136              VL   59
11/2015   CD-4  143              VL   79
01/2016   CD-4  123              VL   22
(Ran a fever after surgery??)

Offline Bhall4

  • Member
  • Posts: 52
Re: Biktarvy and Health Issues
« Reply #14 on: January 22, 2020, 10:02:29 am »
Jim!!

Yeah, when it comes down to it....neither is that bad! Bhall4 has a 3 hour drive. I canít imagine that. I guess Iím a bit spoiled. Also, I only go twice a year for follow ups. No big deal.

Bhall4, thanks for the well wishes. I need to start being thankful for the resources that I have available. Tomorrow, Iím doing a long walk to work out some of those pains. I want to go back to the gym soon. No more complaints!! LOL!

You are welcome!   Keep the positive attitude!   Yes Iíve recently bought a bike and started riding around town. To get some cardio!  We just have to stay on top of our health and by happy!! 😊

Offline Texland

  • Member
  • Posts: 28
Re: Biktarvy and Health Issues
« Reply #15 on: January 26, 2020, 11:54:05 am »
Hey Mac,

Asking to change medications shouldn't be a big deal, but it is. I understand the docs don't want patients developing resistance. I would like to try a few months on the opposite of Biktarvy. My last doctor said no. My previous doctor would have listened to my concerns and probably would go along with it. Since I can't see her for the time being.... Keep shopping around until you find the right HIV doc!

Offline harleymc

  • Member
  • Posts: 1,411
Re: Biktarvy and Health Issues
« Reply #16 on: February 02, 2020, 04:07:14 pm »
Why would somebody tell you about HIV expertise or otherwise unless you ask.

You may not be a 'oribkem patient' but you need to be reasonable and give up on being angry with people who don't share your magical thinking.

Offline J.R.E.

  • Member
  • Posts: 7,815
  • Positive since 1985, joined forums 12/03
Re: Biktarvy and Health Issues
« Reply #17 on: February 02, 2020, 04:57:21 pm »
I switched from Biktarvy, back to my regimen that I was started on in 2003. It's been about 19 days now.

I am back on Viramune ( twice a day), and Epzicom ( Once a day ). As I have stated elsewhere,  the weight gain on Biktarvy was too much for me, along with diarrhea. I was getting too many little pains around my lower mid-section, after being on Biktarvy. ( I was thinking it was lactic acidosis ) But that was only my guess and not a diagnosis !

 I would get the Hershey squirts, about 90 minutes after I ate. I could count on this everyday. Never had issues like that with other meds.

Since the change of meds, no more diarrhea. It stopped about the third day into starting Viramune and epzicom. I also have NOT noticed anymore little pains in the mid section.

I have labs scheduled for March 13th,20, to see how these meds are working.

They are also monitoring my kidney functions.  I have a nephrology appointment set up 8 days from now on Feb 10th.

Otherwise, at the moment, I am doing quite well, and can't complain.

PS I was on Biktarvy from July 15, 2019, until January 13th 2020.  About 6 months.


Ray
« Last Edit: February 02, 2020, 05:04:14 pm by J.R.E. »
Current Meds ; Viramune / Epzicom , 20 mg of Atorvastatin, 25 mg of Hydrochlorothiazide.
Amlodipine Besolate 5mg-- Updated 7/15/20

Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of July 8th,20,  Viral load remains Undetectable

CD 4 @589 /  CD4 % @ 17 %
68 YEARS YOUNG
  
WEAR A MASK !! COVID KILLS !

Offline harleymc

  • Member
  • Posts: 1,411
Re: Biktarvy and Health Issues
« Reply #18 on: February 26, 2020, 02:56:04 am »
Let me get this straight, you ne er had a heart attack before your first heart attack?

Why isn't that any sort of surprise?

 


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