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Author Topic: 3 months diagnosed. First post, and Tivicay  (Read 7924 times)

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Offline Flyer

  • Member
  • Posts: 7
3 months diagnosed. First post, and Tivicay
« on: March 17, 2015, 09:34:47 am »
Hi All,

This is my first post, and first of all I want to thank everyone who has posted here. This forum has given me a lot of information I need when I first diagnosed, and more importantly, made me feel I was not alone and realised life could be as meaningful as it should be after contracting HIV.

So I was diagnosed in late Nov14, the thanksgiving day...and I have gone through those dark and teary days as everyone here has gone through...I had my first lab test in mid Dec14 and my VL was 11k and CD4 was 429. Started med on 8jan15 with Truvada and Isentress.  I have just done my first lab post med today and expected to get the result in 3 weeks - fingers crossed!!!

Today my doctor told me Tivicay has just been approved in HK (yes I am living in HK) and if today's lab showed good results she would switch me from Isentress to Tivicay in 3 mths after all the med import process is done.  It is definitely good news that I can save the troubles of 1 morning dose (I am taking Truvada + Isentress in the evening before sleep and 1 Isentress in the morning), but I am also a bit concerned.  My thoughts are:

1) I have just started med in 2 mths, would it be too soon the switch? ( say if I switch in 3 mths it would be 5-6 mths);
2) currently I don't seem to have any side effect from the Truvada and Isentress combo. Coherence is not an issue either (always within 1 min as scheduled) though the morning dose is always hectic if I am in a meeting at work or something. Would it be possible that some side effect would develop with the new med?
3) I am coinfected with HBV (since I was born) and my liver functions have all along normal. I have read some report and seems that Tivicay might potentially increase the liver damage for patients with HBV/HCV coinfection. This worries me.

I would probably be the first to be subscribed Tivicay in HK, but I know this med has been in US for a while, could anyone share some experience of switching from Isentress to Tivicay and your thoughts on the above?

Thank you!

Offline AT

  • Member
  • Posts: 76
  • Take your meds, keep your chin up and enjoy life.
Re: 3 months diagnosed. First post, and Tivicay
« Reply #1 on: March 17, 2015, 10:16:49 am »
Welcome to the forums and sorry about the diagnosis. I was DX'd about a month before you. I don't know about switching meds. My approach to long term side effects of HIV meds is to maintain my new healthy lifestyle of eating well, reducing stress and exercising. Last week, I went to a meeting about the recent CROI conference and it's clear that our meds are always being improved in efficacy and minimization of side effects. Keep close and keep sharing.

Offline TheNormalLife

  • Member
  • Posts: 222
  • Rules have changed; giving up is never an option
Re: 3 months diagnosed. First post, and Tivicay
« Reply #2 on: March 17, 2015, 02:21:24 pm »
Hey Flyer! It is great that you found this site. I really don't have something very valuable to say except that you're not the only one, we are a lot, and that we will have a long a prosper life.

Hugs!

Ray.
09/14 Conversion
12/14 Diagnosed
12/14 CD4-6; VL-4245 (wrong CD4 test)
01/15 CD4-530 (pheeew)
01/15 CD4-755
03/15 CD4-545; VL-14401
04/15 CD4-623; VL-4531
04/15 Truvada/Efavirenz
07/15 CD4-595; VL-UD
08/15 CD4-763; VL-UD
11/15 CD4-581; VL-UD
03/16 CD4-523; VL-UD
07/16 CD4-655; VL-UD
09/16 CD4-820; VL-UD
03/17 CD4-544; VL-UD
03/17 CD4-669; VL-UD

Offline Tonny2

  • Member
  • Posts: 2,977
Re: 3 months diagnosed. First post, and Tivicay
« Reply #3 on: March 17, 2015, 09:39:36 pm »
Hi All,

This is my first post, and first of all I want to thank everyone who has posted here. This forum has given me a lot of information I need when I first diagnosed, and more importantly, made me feel I was not alone and realised life could be as meaningful as it should be after contracting HIV.

So I was diagnosed in late Nov14, the thanksgiving day...and I have gone through those dark and teary days as everyone here has gone through...I had my first lab test in mid Dec14 and my VL was 11k and CD4 was 429. Started med on 8jan15 with Truvada and Isentress.  I have just done my first lab post med today and expected to get the result in 3 weeks - fingers crossed!!!

Today my doctor told me Tivicay has just been approved in HK (yes I am living in HK) and if today's lab showed good results she would switch me from Isentress to Tivicay in 3 mths after all the med import process is done.  It is definitely good news that I can save the troubles of 1 morning dose (I am taking Truvada + Isentress in the evening before sleep and 1 Isentress in the morning), but I am also a bit concerned.  My thoughts are:

1) I have just started med in 2 mths, would it be too soon the switch? ( say if I switch in 3 mths it would be 5-6 mths);
2) currently I don't seem to have any side effect from the Truvada and Isentress combo. Coherence is not an issue either (always within 1 min as scheduled) though the morning dose is always hectic if I am in a meeting at work or something. Would it be possible that some side effect would develop with the new med?
3) I am coinfected with HBV (since I was born) and my liver functions have all along normal. I have read some report and seems that Tivicay might potentially increase the liver damage for patients with HBV/HCV coinfection. This worries me.

I would probably be the first to be subscribed Tivicay in HK, but I know this med has been in US for a while, could anyone share some experience of switching from Isentress to Tivicay and your thoughts on the above?

Thank you!

          ojo    Hello flyer...welcome...if your comboo is working, why swith it...all your question discussed them with your doctor, specially about your other conditions....welcome again, and keep us posted...hugs      ojo

Offline Flyer

  • Member
  • Posts: 7
Re: 3 months diagnosed. First post, and Tivicay
« Reply #4 on: March 17, 2015, 09:43:58 pm »
Thank you AT and Ray. Yes feeling a lot of positive energy here and i have never been so liget with my food, my sleep and my exercise ever since and I plan to carry on the healthy life style.  Hugs and thank you all again!


Offline Flyer

  • Member
  • Posts: 7
Re: 3 months diagnosed. First post, and Tivicay
« Reply #5 on: March 17, 2015, 09:54:59 pm »
          ojo    Hello flyer...welcome...if your comboo is working, why swith it...all your question discussed them with your doctor, specially about your other conditions....welcome again, and keep us posted...hugs      ojo

Thank you Tonny, yes that was my question too, why switch?  I think it maybe bcoz on day one I had requested stribild as an easy combo but my doctor didn't agree - she thought my baseline kidney function was too risky for stribild- my baseline creatinine was high from my first lab though it may be caused by an intense sports competition I did a few days before the lab...But anyway she had dropped down the note that I prefer 1 dose than 2 doses...  My key concern is if Tivicay has more damage than Isentress as coinfected with HBV. Well I guess i will see how my second lab go (did it yesterday, 2 mths after meds) and just listen to my doctor.   Will keep posted. Thanks!

Offline Tonny2

  • Member
  • Posts: 2,977
Re: 3 months diagnosed. First post, and Tivicay
« Reply #6 on: March 18, 2015, 12:42:59 pm »


       ojo       Hello flyer, yes, you and your doctor have to decide what is best for you due to your conditions...I hope and your numbers come back good and you feel comfortable with your combo...I take four different meds twice a day, no big deal, just a matter of getting used to it, there was a time that I would take 20 different meds, and some with food, other without, then, it was a really mess taking meds...ok, like I said, best of lucks...hugs    ojo

Offline buginme2

  • Member
  • Posts: 3,426
Re: 3 months diagnosed. First post, and Tivicay
« Reply #7 on: March 18, 2015, 04:08:22 pm »
I've been taking Tivicay since it was approved in the US.

It is by far the easiest and best tolerated medication I have taken, hiv or otherwise.   If your at all worried about it, don't. 
Don't be fancy, just get dancey

Offline vertigo

  • Member
  • Posts: 205
Re: 3 months diagnosed. First post, and Tivicay
« Reply #8 on: March 19, 2015, 01:36:03 am »
Hello Flyer and welcome.

I was on Isentress/Truvada for the first year I was on treatment, then switched to Tivicay/Truvada.  Both Isentress and Tivicay are great drugs, with few side effects.  If you don't have any now, it's unlikely that you'll experience any with a switch.

While I was ok with the 2x daily Isentress dosing, I have to admit it's much better just taking Tivicay 1x a day.  I also like that two big 400mg tabs were replaced by one tiny 50mg tab -- makes it easier to fit several days worth into pill fobs.

There's also some thought that Tivicay has a higher barrier to resistance than Isentress, but so long as you're not missing any doses that won't matter.

Regarding your technical questions concerning a Hep co-infection, that's what your doctor is for.  I would imagine that if she's proposing a switch, everything should be ok.  It sounds like you're in doubt, so bring it up.

You'll be fine either way given these options.

Offline Flyer

  • Member
  • Posts: 7
Re: 3 months diagnosed. First post, and Tivicay
« Reply #9 on: March 19, 2015, 10:00:00 am »
Hello Flyer and welcome.

I was on Isentress/Truvada for the first year I was on treatment, then switched to Tivicay/Truvada.  Both Isentress and Tivicay are great drugs, with few side effects.  If you don't have any now, it's unlikely that you'll experience any with a switch.

While I was ok with the 2x daily Isentress dosing, I have to admit it's much better just taking Tivicay 1x a day.  I also like that two big 400mg tabs were replaced by one tiny 50mg tab -- makes it easier to fit several days worth into pill fobs.

There's also some thought that Tivicay has a higher barrier to resistance than Isentress, but so long as you're not missing any doses that won't matter.

Regarding your technical questions concerning a Hep co-infection, that's what your doctor is for.  I would imagine that if she's proposing a switch, everything should be ok.  It sounds like you're in doubt, so bring it up.

You'll be fine either way given these options.

Thanks vertigo for sharing your experience and thoughts. Yes my doctor did say that if I am doing well with isentress I should be fine with Tivicay too. She seemed to be a bit indifferent with the hvb issue as her approach is that she will monitor my lab and would not say no just for a potential side effect - a different approach from when she declined my request for Stribild as first treatment combo though. But I will discuss this with her next time when my lab results are out.  Thanks again!

Offline Flyer

  • Member
  • Posts: 7
Re: 3 months diagnosed. First post, and Tivicay
« Reply #10 on: April 15, 2015, 05:02:14 am »
So today I called the medical centre for the lab results (doctor appointment is in May which I cannot wait to know!).  This is the first set of lab after 2 mths medication - CD4 went up from 429 to 477, a bit disappointing, but VL is now UD, yay! I guess that deserves a mini celebration?

Offline zach

  • Member
  • Posts: 3,586
Re: 3 months diagnosed. First post, and Tivicay
« Reply #11 on: April 15, 2015, 06:06:52 am »
mini celebration?!? are you kidding? thats the cause for the biggest celebration, reaching UD is probably the greatest milestone you're going to achieve in this fight.

party!!

meds don't directly affect cd4 count, so as long as they are rising, no matter how slowly, things are going according to plan.

congratulations! you've suppressed HIV in your body, now your immune system can begin to rebuild itself as best as possible (thats when your cd4 will improve)

flyer, you've just had victory in the major battle, soak it in and feel great about it. you have no reason for any disappointment at all.

Offline Flyer

  • Member
  • Posts: 7
Re: 3 months diagnosed. First post, and Tivicay
« Reply #12 on: April 15, 2015, 07:29:07 am »
mini celebration?!? are you kidding? thats the cause for the biggest celebration, reaching UD is probably the greatest milestone you're going to achieve in this fight.

party!!

meds don't directly affect cd4 count, so as long as they are rising, no matter how slowly, things are going according to plan.

congratulations! you've suppressed HIV in your body, now your immune system can begin to rebuild itself as best as possible (thats when your cd4 will improve)

flyer, you've just had victory in the major battle, soak it in and feel great about it. you have no reason for any disappointment at all.

Thank you Zach for the most cheerful words. I do feel great now! Thanks and hugs.

Offline vertigo

  • Member
  • Posts: 205
Re: 3 months diagnosed. First post, and Tivicay
« Reply #13 on: April 15, 2015, 01:22:56 pm »
Great news, congrats!  As Zach said, CD4 count will rise over time, but it's reaching UD that's the big deal.

 


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