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Author Topic: valcyte  (Read 2225 times)

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Offline jerek

  • Member
  • Posts: 25
valcyte
« on: October 24, 2006, 01:11:56 PM »
i was recently diagnosed with early signs of cmv retinitis.  i saw a retinal specialist who immediately did an intravitreal injection in my eye & started me on valcyte, 900mg two times a day for the first 3 weeks & then 900 mg a day til my cd4 rises.  a week after the injection i went back to the specialist to find out the injection cleared up 80% of the cmv, but i need to remain on the valcyte for a couple more months.  it is almost two weeks into the valcyte & i have broken out in a few small rashes on my upper body.  talked to my doc & he said just a minor side effect that i will have to work through or else i could go blind from stopping the valcyte.  just wondering if anyone else on here has experienced this. any advice would be greatly appreciated.  thanks.

jerek

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: valcyte
« Reply #1 on: October 24, 2006, 01:22:01 PM »
talked to my doc & he said just a minor side effect that i will have to work through or else i could go blind from stopping the valcyte. 

oh my goodness!!!!  :o  whew, do exactly as the doc says! ... so glad to hear about your progress. can't say much else except keep up the good work!  :)  :)

Offline penguin

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  • The Penguin Whisperer
Re: valcyte
« Reply #2 on: October 24, 2006, 02:02:06 PM »
hi jerek - rough time, from the sound of things..but glad to hear the valcyte has been doing its job.

the rash is quite common, & it should clear up. If it's bothering you, you could try taking an oral antihistamine like benadryl - check with your doctor first though.

for cmv, there are other drugs, but they are mostly given via iv line - not the most convenient, and all with their own possible side effects.

good luck -  let us know how things are going, eh?

Kate

ps - nice to meet you, welcome  :)

Offline jerek

  • Member
  • Posts: 25
Re: valcyte
« Reply #3 on: October 24, 2006, 02:16:05 PM »
thank you guys for the kind wishes.  i talked to my doc this morning he suggested claritin duringthe day & benadryl at night cuz i need to stay awake at work.  i am just glad to hear from others that the rash is common.  i guess i was just very worried b/c this is the first side effect from any med that i have ever had.  will keep you all posted & once again thanks for the good wishes & info.  take care. nice to meet you as well!!! ;D

jerek

Offline Christine

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  • Posts: 1,069
Re: valcyte
« Reply #4 on: October 24, 2006, 02:40:04 PM »
Hi Jerek,
I am on Valcyte also. I was diagnosed three years ago with cmv retinits, and started on 900mg twice a day. I experienced horrible nausea and vomitting for the first few months. Projectile vomitting without any warning. I was told the same thing, deal with the side effects or go blind. I dealt with the side effects, and they did go away, and the cmv was suppressed. I did not loose any vision, just had some floaters which looked like I was looking through a dirty window.

I went down to 900mg once a day, and maintained opthomology appointments without any problems. Then in July of this year, the cmv flared up again (my tcells had dropped) and was put on the 900mg twice a day again without any side effects this time.

It actually helped me since I had cmv in the gut which was suppressed with the increased dose. This time around I have lost a little vision in my right eye on the inside peripheral.

I get the valcyte through my insurance, and I have had trouble getting it filled sometimes. I try to order it 3-4 weeks in advance so I won't run out.

I know the side effects can be difficult, but loosing your vision is worse. Hang in there.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline jerek

  • Member
  • Posts: 25
Re: valcyte
« Reply #5 on: October 24, 2006, 11:43:03 PM »
christine,

thank you for the kind words.  hearing from others are going through or been through the same thing really helps out.  i have no trouble getting the valcyte from my insurance, thank god for that one. even if i did i have a state funded pharmaceuticals card that would pick up the difference so at least that is one worry out of my way.  sorry to hear that you had a recent flare up of cmv.  i hope all is well for you now.  take care. and thanks again for the kind words and advice.

jerek

Offline jerek

  • Member
  • Posts: 25
Re: valcyte
« Reply #6 on: November 07, 2006, 07:47:37 AM »
;D so i went to my retina specialist yesterday and received great news.  the cmv is totally gone, my optic nerve is no longer swollen & i can reduce the dosage of valcyte to 900mg once a day.  the rash from the valcyte is slowly subsiding & i fell like i am getting back to "normal".  i go to my hiv specialist on Thurs so hope he has good news when i get my new labs done.  2206 has not been a good year...
June:pneumocystis...tcell 5...vl 150,000 or more i cant remember exactly
july:viramune & truvada
sept: t cells 5...vl 150,000...changed meds to norvir, reyataz & truvada
i am definitely looking for a better start to 2007.  once again thank all that have replied & helped me to not lose my mind!

jerek

Offline penguin

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  • Posts: 747
  • The Penguin Whisperer
Re: valcyte
« Reply #7 on: November 07, 2006, 09:04:17 AM »
magic  :)

keep feeling better!

kate

Offline jerek

  • Member
  • Posts: 25
Re: valcyte
« Reply #8 on: November 07, 2006, 12:27:26 PM »
thanks kate!

Offline Christine

  • Member
  • Posts: 1,069
Re: valcyte
« Reply #9 on: November 07, 2006, 01:38:22 PM »
Great news! :)

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline J.R.E.

  • Member
  • Posts: 7,126
  • Joined Dec-2003 Living positive, since 1985.
Re: valcyte
« Reply #10 on: November 12, 2006, 05:59:33 AM »
Jerek,

Glad to hear that things are going much better for you, and that the medication, did it's job !!!



Wishing you the best-----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

 


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