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Author Topic: Has anyone here been on Valcyte for CMV?  (Read 498 times)

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Offline DallasJ

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  • Posts: 16
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Has anyone here been on Valcyte for CMV?
« on: August 22, 2014, 04:26:17 PM »
I've been taking Valcyte (valganciclovir) for a month now because I have CMV in my intestines and colon (along with my Atripla and antibiotics for HIV).  Wondering if anyone else has been on it and what type of side effects were experienced and how long you had to take it.

I seem to be on a very high dosage (from researching the drug online) and am starting to have memory problems.  I've always been very sharp mentally, but not the past couple of weeks.  Not sure which drug that may be causing it though.

I also suffer from severe numb, tingling pains in my feet, legs, hands, and back but I'm not sure if the CMV has affected my colon AND my nervous system or if I'm just experiencing peripheral neuropathy from having HIV.  My doctor said she doesn't know either, and we are just hoping the meds solve the issue with time.

I would love to find someone who has experience with Valcyte and/or CMV.

Thanks for reading.  All comments are welcome!
7/7/14: tested positive
7/11/14: started Atripla
7/16/14: CD4 = 15, VL = 1,100,000
8/27/14: CD4 = 46, VL = 210
10/29/14: CD4 = 30, VL = 120

Offline Almost2late

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  • Posts: 485
  • "The Nutcracker"
Re: Has anyone here been on Valcyte for CMV?
« Reply #1 on: August 22, 2014, 05:31:44 PM »
Hi Dallas, I was on valcyte when I was first dx, had about the same cd4's as you but came off of valcyte once I reached over 50 cd4's.. How long have you been on the meds?
"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

“Nothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.” - Nostradamus

Offline Almost2late

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  • "The Nutcracker"
Re: Has anyone here been on Valcyte for CMV?
« Reply #2 on: August 22, 2014, 05:41:20 PM »
Oh and I only had small traces of cmv, the valcyte was a precaution because my cd4's were 13... You will get better, just like I did.. I also remember having memory issues but I believe it was the Atripla which I switched out months later..
Wishing you the best of luck to you... BTW, love your icon  :)

"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

“Nothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.” - Nostradamus

Offline DallasJ

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  • Posts: 16
  • One day at a time.
Re: Has anyone here been on Valcyte for CMV?
« Reply #3 on: August 22, 2014, 05:41:43 PM »
I've been on them for 1 month.  1800 mg / day (four 450 mg tabs, 2 in the morning and 2 @ night).  Read online I should take it until my CD4 is over 200, and again if it ever drops below 200 in the future, so I'm surprised you were able to stop after a CD4 of 50.  I hope I can too! Did you notice any adverse effects from when you were on it?
7/7/14: tested positive
7/11/14: started Atripla
7/16/14: CD4 = 15, VL = 1,100,000
8/27/14: CD4 = 46, VL = 210
10/29/14: CD4 = 30, VL = 120

Offline DallasJ

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  • Posts: 16
  • One day at a time.
Re: Has anyone here been on Valcyte for CMV?
« Reply #4 on: August 22, 2014, 05:47:06 PM »
Ah, ok.  We were posting at the same time...   I tested poz for it in my blood and then poz again for all the biopsies from a colonoscopy, so I think I have it pretty bad.  I may be on it a while.
The memory problem may just be from the Atripla, then.

Feel free to steal my icon! We can share it.  lol.  I found several I like so I can easily change mine if you want to use this one for a while.  :)
7/7/14: tested positive
7/11/14: started Atripla
7/16/14: CD4 = 15, VL = 1,100,000
8/27/14: CD4 = 46, VL = 210
10/29/14: CD4 = 30, VL = 120

Offline Almost2late

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  • Posts: 485
  • "The Nutcracker"
Re: Has anyone here been on Valcyte for CMV?
« Reply #5 on: August 22, 2014, 05:52:15 PM »
Well, I'm still on Bactrim and Azithrimycin, I had PCP in my lungs which is now gone.. Story might be different for as far as the Valcyte.. Also was on a steroid that I can't remember the name of.. Best to follow your docs instructions and tell them your side affects, it might be the atripla... I'm sure you'll recover, just be patient  ;).. Your gonna pull through this
"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

“Nothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.” - Nostradamus

Offline Almost2late

  • Member
  • Posts: 485
  • "The Nutcracker"
Re: Has anyone here been on Valcyte for CMV?
« Reply #6 on: August 22, 2014, 05:56:55 PM »
Feel free to steal my icon! We can share it.  lol.  I found several I like so I can easily change mine if you want to use this one for a while.  :)

Thank you my brother.. you are a guy right?  :-[

I think I will use it, we will be like family  :D
"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

“Nothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.” - Nostradamus

Offline DallasJ

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  • Posts: 16
  • One day at a time.
Re: Has anyone here been on Valcyte for CMV?
« Reply #7 on: August 22, 2014, 06:02:55 PM »
Yeah, I'm on azithromycin also, and sulfamethoxazole (to help protect me from pneumonia and other infections, I think?).  Been taking a lot of pills lately, and trying to stay on top of it.  Phone reminders are my best friend!

Yes, I'm a guy.
7/7/14: tested positive
7/11/14: started Atripla
7/16/14: CD4 = 15, VL = 1,100,000
8/27/14: CD4 = 46, VL = 210
10/29/14: CD4 = 30, VL = 120

Offline Almost2late

  • Member
  • Posts: 485
  • "The Nutcracker"
Re: Has anyone here been on Valcyte for CMV?
« Reply #8 on: August 22, 2014, 06:14:10 PM »
From what I've been told Azithromycin can be stopped once you reach 100 cd4's for 3 consecutive test.. and Bactrim (sulfamethoxazole) till you reach 200 cd4's..
most importantly is getting you vl to undetectable levels, to stop it from hurting your immune system.

Great, your a dude.. forgive my late responses but I'm a one finger typist  :(
"Every man has his own destiny: the only imperative is to follow it, to accept it, no matter where it leads him." - Henry Miller

http://www.youtube.com/watch?v=ZBkwPYq4nhQ

“Nothing in the world can one imagine beforehand, not the least thing, everything is made up of so many unique particulars that cannot be forseen.” - Nostradamus

Offline eric48

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  • Posts: 1,207
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: Has anyone here been on Valcyte for CMV?
« Reply #9 on: August 22, 2014, 07:21:01 PM »
Îlove the icons !!!!
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: NCT02157311 = 4d. ON, 3d. OFF)

 


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