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Author Topic: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One  (Read 4914 times)

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Offline Renee

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I am a female and I have been positive for some years.  I was on Viracept and Combivir for maybe about 10 years until early 2016.  Non-detectable, no side effects, CD4 range was between 389 and 600.  In 2016, my Doc said my meds are ancient and wanted me to take less pills. I was reluctant to do a switch due to no side effects. She figured a new med would increase my CD4 count. I began Truvada and Tivicay. What began to happen after about 3 months: sweating at night, sweating during the day, sweating if I thought too hard about something; memory decreased drastically, if I were adding 5 numbers, I was forgetting my total as I was going along and it wasn’t even big numbers, focus and concentration is off; on the job, I am moving slower to get my work done; have to repeat something in my mind to figure it out; making small simple mistakes. My work product is not as good as it used to be at all. I am no longer sharp as I was at all. It’s like I am always getting something wrong.  I was not like this AT ALL BEFORE THE MEDS SWITCH.  One other thing I noticed is it seems to be hard to figure things out to make decisions in my life.  I reported to Doctor and Doc said I may have HIV Dementia. Had MRI – no dementia. Doc did not want to believe it was the meds because Doc had such high hopes for it to increase my cd4 count. Count remained in same range. I have always taken Iron, C and Folic Acid vitamins. I take them in morning and meds in evening with food. I now take Vit-D. Not sure if they are decreasing med effects to increase CD4 count.

I told Doc I want to change my meds. Doc asked which one is the issue Truvada or Tivicay. I told her I did not know because I started both at same time.  I did some reading about both and I have read others having similar issues and they are on Truvada.  I thought to get rid of that one.  She said she may switch me to Tivicay + Epsicom. Or switch to Triumeq.

Anyone having my symptoms from Truvada and Tivicay?  Anyone on Epsicom or Triumeq?  I am supposed to switch this week.  HELP!!!

Offline Ptrk3

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #1 on: February 13, 2017, 07:03:32 pm »
I have removed your identical post from the "Long Term Survivors" forum, since the forum does not allow identical posts in different forums.  Your post is a better fit for this forum and will allow more members to respond to your questions.
« Last Edit: February 13, 2017, 07:45:01 pm by Ptrk3 »
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Online Jim Allen

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #2 on: February 13, 2017, 07:42:38 pm »
Hi

So this is one of the reasons I dropped "Truvada" I thought that I had lost my mind, kept forgetting where I had left the car, locking the car, leaving the front door open of the house at night and I did not know why i was in shops and just got slower and slower with less concentration at work. Lost track of time and could not recall the day and kept mixing up the years, this happened as it dragged on for months and months until i was in tears and thought i was starting to go demented.

However its very uncommon and most people are fine, you are clearly not with this med combo. I can't and nobody here can tell you the cause. 

Me personally I doped the Truvada and than kept the Tivicay in the form of the new combo Truimeg, my issues were resolved within 1-2 weeks.

Perhaps your doc can work with you on just dropping 1 of the two meds for a week to see if you have improvement thus pointing towards what one is causing the problem? Do this if the doc agrees and only than of course .

Jim

EDIT - Health warning for the readers - Millions of people took and still take this drug, my personal experience was rare and not the norm and should not scare people off. Hence I don't normal comment on "Truvada" expect for saying it does not agree with me.

Never mess with the meds unless taking to a doctor.
« Last Edit: February 13, 2017, 08:01:10 pm by JimDublin »
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Offline TH_guy

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #3 on: February 15, 2017, 10:59:40 am »
Hi Renee,
My voice is from Truvada, feeling something same you describe ( especially about sweat). Now on Tivicay w/o Truvada, nothing near, that have before.

Offline Renee

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #4 on: February 16, 2017, 06:12:11 am »
Hello Ptrk3
Thanks for relocating my post. I wasn't sure where it would best fit. --Renee

Offline Renee

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #5 on: February 16, 2017, 06:41:03 am »
Hello JimDublin,

I did get to read your post the next day after you responded and went to the doctor with a mind to do as I thought and you had done. Doc ended up mentioning about another drug she wanted me to take instead called Genvoya. But, Doc ended up saying that Truvada was still in it but a smaller dose. I wanted to just get rid of the Truvada and go with her original offer of Triumeq. So Triumeq I begin today, February 16, 2017.

I thank you for sharing your experience with Truvada, especially being that your symptoms were similar to mine. And each person is different and something may work for some but not for all.  And that is the good thing that AIDS/HIV research has come a looooong way to make available various combinations to try.

Another thing I forgot to mention that occurs, not sure from Truvada or Tivicay. I am more emotional in a sense. For example, if I am talking to someone about something sensitive that may be a little sad, tears come really really really quickly. I cry at the drop of a hat on emotional type conversations. I was nothing like that before the this med combo. I remember telling someone about it and I began crying just from telling them about it. Gracious!!! LOL!!!

Lastly, I have something else that occurs, not sure from which med, you could almost miss this, but if you know yourself well, you know this isn't you. If someone does something towards me, my mind will jump to the conclusion that they did it for a negative reason and then you will begin thinking negative stuff on how to respond. This can cause you to jump to the wrong conclusion too quickly and have you respond to the person in a negative way, which I try not to do because I am in the work place. It is not for all situations, but mostly in the work place. Like maybe you even overthink a situation but more negative. I have to put this under control and not respond immediately or at all, but say to myself IT MAY NOT BE THAT SO SAY NOTHING AND JUST CHILL. This is on the mild side, not like you are a raving lunatic and go ballistic!!  LOL!!
 
Well, today is the big day. I was taking Truvada and Tivicay at night because I was taking vitamins in the morning. When do you take Triumeq, with or without food?  Do you take vitamins as well?  If so, at a separate time from the Triumeq?

Thanks again JIM DUBLIN for sharing your experience.  I will see how the Triumeq works for me. I am kinda glad it has one of my old meds in it from my Combivir/Viracept combo. I miss my Combivir/Viracept!!!  I love you COMBIVIR+VIRACEPT!!!  LOL!!!

Offline Renee

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #6 on: February 16, 2017, 06:49:51 am »
Hello TH_guy,
Ahhh!! So you had the sweating experience as well.  I ended up taking 1 Tablespoon for 1 week then 2 tablespoons for 3 weeks of Extra Virgin Coconut Oil for about 1 month total in the morning mixed in a hot drink - Alpine Spiced Apple Cider Original Instant Drink Mix from Walmart. The sweating kinda died off. It may still show itself every now and then but it is nowhere near as bad as it was.

Thank you too TH_guy for sharing your experience as well.  It is great these forums exist because they really help. I have read the forums and so many different posts before I had even posted.  Quick question...do you take anything with the Tivicay?

Online Jim Allen

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #7 on: February 16, 2017, 07:32:37 am »
Quote
When do you take Triumeq, with or without food?  Do you take vitamins as well?  If so, at a separate time from the Triumeq?

Look glad to hear you made the switch, other than a few days/week of settling in I am sure you will be fine, just take the meds and live you life. The usually message you should not be expecting any ongoing problems from this past the first adjustments.

I take mine with food, but there is no food requirement.

Vitamins - No but if you are note that Triumeq should be taken two hours before or six hours after taking certain (cation-containing) antacids or laxatives, sucralfate, oral iron supplements, calcium supplements, or buffered medication.

Quote
Lastly, I have something else that occurs, not sure from which med, you could almost miss this, but if you know yourself well, you know this isn't you. If someone does something towards me, my mind will jump to the conclusion that they did it for a negative reason and then you will begin thinking negative stuff on how to respond. This can cause you to jump to the wrong conclusion too quickly and have you respond to the person in a negative way, which I try not to do because I am in the work place. It is not for all situations, but mostly in the work place. Like maybe you even overthink a situation but more negative. I have to put this under control and not respond immediately or at all, but say to myself IT MAY NOT BE THAT SO SAY NOTHING AND JUST CHILL. This is on the mild side, not like you are a raving lunatic and go ballistic!!  LOL!

Okay well your switching now so if it was the meds it should drop off but if not talk to a general practitioner about this and perhaps a therapist, you have been under pressure and stress and this could just be showing through.

Quote
Quick question...do you take anything with the Tivicay?
Thguy is on an experimental regime. We are wishing him all the best.

Jim   

https://www.gsksource.com/pharma/content/dam/GlaxoSmithKline/US/en/Prescribing_Information/Triumeq/pdf/TRIUMEQ-PI-MG.PDF

« Last Edit: February 16, 2017, 08:08:52 am by JimDublin »
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Offline Renee

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #8 on: February 24, 2017, 09:34:09 am »
Just want to provide an update for my new med Triumeq, switched from Truvada and Tivicay. I have taken the new med for the past 8 days. So far I will report that I do have some sweating, not alot but I do have some. That has stopped some time back but is now occurring here and there. No bad or vivid dreams, actually no dreams so far. My head almost, oddly, feels lighter. Not sure how to explain it. I even think I am not as forgetful but I am watching this closely. I was speaking on something yesterday and I could feel the tears immediately begin to form but I willed real hard for them to stay back. I could feel them there beginning in the eye but they did not form more enough to fall. Could not do that before. So with me, I was have memory issues and too emotional, as mentioned some meds may give some certain side effects and others other side effects. I will provide another report after a little more time on the new meds.

Offline Wade

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #9 on: February 24, 2017, 09:43:50 am »
Good to hear things are working out, sounds like you will be fine now !

Best, Wade
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Offline Renee

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #10 on: February 28, 2017, 06:28:35 pm »
Hello Wade,
So far all is ok. Thanks.

Offline Renee

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #11 on: April 05, 2017, 01:13:45 pm »
Update:
It's been like 6 weeks on new regimen of Triumeq from Truvada+Tivicay.

Something that happened before the switch was I was getting on an elevator (maybe in January 2017) and my leg bone cracked so loud that my co-worker heard it. That never happened before ever.  Even after the switch my bones have cracked a few times since.

I have dreamt more but nothing dark or scary or violent.

Was having some sweating. Not so much now. Maybe tapering off. Hope so. LOL!!

And most of all, my mind is lighter and clearer.  I can look at two 2-digit numbers and add them in my mind. I can look at a document with a number or some words I need and get to another document and remember the words or numbers to place in the new document.  My recall memory is sooo much better.  I love this most of all.  Less careless mistakes in my work.

Online Jim Allen

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Re: HELP!!! - Side Effects from Truvada or Tivicay - Not sure Which One
« Reply #12 on: April 05, 2017, 03:01:37 pm »
 :)

Really glad to hear you feeling and doing so much better with the Truimeg and so soon as well, that is excellent. 

As for the cracking noise from joints, if it persists and bothers you have a GP/Primary  check, as it could be any number of reasons.

Take it easy.

Jim
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