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Author Topic: anyone experienced with viramune and/or intelence?  (Read 4107 times)

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Offline OutOfDarkness

  • Member
  • Posts: 90
anyone experienced with viramune and/or intelence?
« on: August 01, 2008, 12:50:50 PM »
Hi Ladies,
I don't believe I have posted here, but have posted on the other topics at times.  I went to my appointment yesterday my question is specific to us females!  I have been on Sustiva and Truvada and have been having great difficulty with what I believe are Sustiva side effects which affect my sleep, horribly.  I am so sick of having to work my life around SLEEPING, what kind of life is that?  I have asked about other possibilities that I could take here and received some suggestions and Viramune seemed to be a good substitute as it is the only one that works the same as Sustiva, but my doc says that she has seen women have trouble with rashes and liver toxicity, more so than men.  I had been diagnosed with fatty liver before going on hiv meds and my liver functions were slightly abnormal.  Funny thing is that when I started the meds, my liver functions actually got better!  I wish I could just keep on taking what I have been, but if the possiblity of a different med having the same pharmocogenic outcomes without the side effects exists, I can't but truly wish to try to make this change.  She suggested intelence, but my only apprehension about this drug is that it is fairly new.

So if you could let me know your help will be sooooooo appreciated.  Thank you, and peace.
2000 - seroconverted
2005 - cd4 350, VL 113,000
3/06 - started sustiva/truvada
3/08 - cd4 1,300 VL >50(undet.)

Offline minismom

  • Member
  • Posts: 2,605
  • Quocumque jeceris stabit
Re: anyone experienced with viramune and/or intelence?
« Reply #1 on: August 01, 2008, 04:43:56 PM »
We switched Mini from Susteva to Viramune this past January.  She was put on 1/2 dose for the first week, as per suggestion.  About a week into treatment, she developed a head-to-toe rash and swelled.  Her lips were huge and looked like Mick Jagger.  We stopped the Viramune and it took about a week before she looked "normal" again.  We had her liver enzymes checked after the reaction, and they were better than they've ever been - go figure.  Anyway, she didn't go back on Viramune, nor did she start back the Susteva.  Her VL remained undetectable and we only saw a very small dip in her t-cells which are still over 1000.

Hope this helps.
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline OutOfDarkness

  • Member
  • Posts: 90
Re: anyone experienced with viramune and/or intelence?
« Reply #2 on: August 03, 2008, 10:53:28 PM »
Thanks Mum,

Mini is such a brave and beautiful little girl, it's heartbreaking when you know a child with any life threatening illness.  Your very strong as well it seems, of course I am sure it is never an easy thing to go through.  Thank you again for letting me know of her side effects. 
2000 - seroconverted
2005 - cd4 350, VL 113,000
3/06 - started sustiva/truvada
3/08 - cd4 1,300 VL >50(undet.)

Offline wishful

  • Member
  • Posts: 342
  • I am pretty content nowadays..Life is gud..
Re: anyone experienced with viramune and/or intelence?
« Reply #3 on: August 04, 2008, 12:38:42 AM »
viramune has been working swell for me for almost 5 years now..never any side effects or problems...i take truvada with it as well
Live life to the fullest...

Offline mahalia

  • Member
  • Posts: 54
Re: anyone experienced with viramune and/or intelence?
« Reply #4 on: August 04, 2008, 09:03:40 AM »
hi darkness, i was also on viramune but reacted badly to it, same as what happened to mini. i was hospitalised for two weeks and given one week bed rest...got Steven Johnson from it. now note that i does not happen to everyone...some people do not have any problems with it, wish is a testimony. hope this helped....

Offline #1 mom

  • Member
  • Posts: 114
Re: anyone experienced with viramune and/or intelence?
« Reply #5 on: August 05, 2008, 05:05:01 PM »
Hi. I can't speak to female differences with viramune but my son Lucas is on viramune/epivir/videx. Lucas is adopted, his birthmother was + so he received AZT prophylactic. His test at birth and 1 month were negative. After getting him out of the NICU I took him to see a pediatric infectious disease doctor and unfortunately he came back +. Just in the time between his first and second + test (about 2.5 weeks) his viral load was climbing fast and he started to have enlargement of the spleen and lymph nodes. :'( He was started on viramune December 06 when he was 3 months old. We started with once daily for a think 2 weeks then went to twice daily. He started the videx and epivir at the same time. His viral load quickly became undetectable and his CD4 count has always been within normal range. The enlargements of spleen and lymph nodes also went away. He has not had any detectable side effects so far and he'll be 2 August 30. I hope that helps.
Amy

Offline positively_me

  • Member
  • Posts: 87
  • love me...love my monkey
Re: anyone experienced with viramune and/or intelence?
« Reply #6 on: August 06, 2008, 11:29:45 PM »
I did the Sustiva/Truvada cocktail before being switched to Atripla.  They worked well for my numbers but caused my depression to become unbearable. I also was spacey most of the morning and had the hardest time waking up.

My first experience with meds was with Viramune and I got the liver toxicity.  That was rough and I wouldn't wish it on anyone.

I don't know about Intelence, but I went on Isentress (another new drug in a new drug class) with Truvada 2 months ago and I couldn't be happier.  After trying 3 regmines, this is my 4th and by far the easiest.

I wish you luck in finding a replacement for the Sustiva!
Great minds discuss ideas; Average minds discuss events; Small minds discuss people.  - Eleanor Roosevelt

Offline jennynyc7

  • Member
  • Posts: 146
Re: anyone experienced with viramune and/or intelence?
« Reply #7 on: August 22, 2008, 01:58:04 PM »
I started out on Truvada/Reyataz/Norvir and had a bad reaction to the Reyataz so my Dr switched me to Truvada & Viramune despite my high CD4 count. I have been on the regimen for about 5 months and so far liver function tests have been normal. Just recently I began having some right rib pain and had him go ahead and run another liver panel in case and it was normal as well so not sure what the pain is all about. He just tells me as long as it doesn't get worse it should be ok.

Jen in KY
dx'd Feb 12, 2008
12/24/07-infected
1/3/08-ARS began
2/12/08-diagnosed
Initial Vl=99000
CD4=585
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
                cd4=1250
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)
                cd4=1234

Offline valerie

  • member
  • Posts: 1
Re: anyone experienced with viramune and/or intelence?
« Reply #8 on: August 22, 2008, 03:51:07 PM »
Hi,
I have been HIV/HCV+ for more than 21 yrs. I have been taking Viramune and Truvada for 5-6yrs. CD4=889 VL-undetectable. I was concerned aout Viramune due to my liver issues, but my Doc. had great success with it and held my hand along the way. We monitored my liver closely and I am happy to say that I have had no problems. I believe that all pharmaceuticals have side effects but they may be different for all of uss. Personally, I am terrified of Sustiva. I don't need any more craziness....

Good Luck on your quest.

Valerie

 


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