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Author Topic: Gross dream - time for change!  (Read 2493 times)

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Offline OutOfDarkness

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  • Posts: 90
Gross dream - time for change!
« on: July 13, 2008, 08:21:01 AM »
Well it is going to be time to make some changes with my meds.  I can't take the fatigue, insomnia, bad dreams, weight gain in my life any longer.  Mostly my sleep is what is bothering me and sleep medications don't help.  The other night I had this gross dream that my teeth were falling out.  I could actually FEEL the sensation of this in my dream.  I don't wear dentures.  I had to keep pushing them down back into my gums and then there were more teeth growing up from under them and then they kept coming out and my mouth was sore.  I am thinking now, this is it!  I give up on Sustiva and I am calling my doc on Monday to see if I should start the change over before I go in.  After reading many posts here, it does not make any sense to me that I have been struggling with these side effects for 2 years now.  The quality of my life has suffered long enough.  The 31st is my doctor appointment, it seems like an eternity.

Since I have found you all and the education that is on this website it seems clearer now.  I was so afraid to change anything with my counts being good, you know the saying, if it ain't broke don't try to fix it?  Well, it is broken and I am going to fix it, damn it!
2000 - seroconverted
2005 - cd4 350, VL 113,000
3/06 - started sustiva/truvada
3/08 - cd4 1,300 VL >50(undet.)

Offline BT65

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Re: Gross dream - time for change!
« Reply #1 on: July 13, 2008, 08:37:14 AM »
Out, I couldn't tolerate Sustiva either because of the side effects.  Some people do, some don't.  It seems you've been on it long enough to know if it would be working well for you or not.  Good luck.
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Offline Miss Philicia

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Re: Gross dream - time for change!
« Reply #2 on: July 13, 2008, 12:02:38 PM »
OutofDarkness, have you been on a Reyataz based combo yet?  Seems most people that have issues with Sustiva and, absent of resistance issues of course, are now switching to Reyataz instead of Kaletra.  Less side effects, aside from some potential yellowing for a couple of weeks during the first month, which then resides.
"Iíve slept with enough men to know that Iím not gay"

Offline aztecan

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  • Posts: 5,512
  • 31 years positive, 59 years a pain in the butt
Re: Gross dream - time for change!
« Reply #3 on: July 13, 2008, 02:51:16 PM »
Hey Out,

Yep, I would be ready to let the doctor know it is time to change. I did the same thing you did. I stayed on the same meds because they were working, regardless of the side effects.

In my case, it was Crixivan, which I stayed on for 11 years. I have a buffalo hump on my back, the front of my neck looks like I have the goiter from hell and I have Crix belly.

May I add none of the above had done anything to enhance my dating prospects.

I often wonder why I stayed so long on Crixivan. Mind you, it did a real number on the virus and I don't think people should just switch at the drop of a hat or on a whim.

But, after two years putting up with Sustiva, you have definitely suffered enough. I was on Sustiva after switching from Crixivan.

I lasted two months. The doc said I had the worst side effects from Sustiva he had ever seen.

So, I say go for it. Philly's suggestion of Reyataz is also worth consideration. I like Reyataz a lot, it is very lipid friendly, meaning it doesn't seem to affect cholesterol like other PIs do, and can be taken once a day.

The jaundicing he mentioned doesn't happen to everyone and, even if ti does, usually goes away after a few weeks and isn't dangerous.

Let us know what you and your doctor decide to do.


« Last Edit: July 13, 2008, 02:52:58 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Nashvegas

  • Member
  • Posts: 196
Re: Gross dream - time for change!
« Reply #4 on: July 14, 2008, 09:14:09 AM »
Sorry to hear abut your problems with Sustiva.  I was very concerned about those side effects, so I started with a Truvada + Viramune combination.   I've been on it for almost one month now, and I'm happy to report that I have experienced NO side effects whatsoever.  None.  Zilch.  And the great news is that the combo seems to be doing a kick-ass job of beating the virus.  After a two-week phase-in period when I took only a half-dose of Viramune (as is recommended), my viral load went down from 9,030 to 113, and my CD4 rose from 166 to 272.  You might want to consider this combo as well.  I've been really happy with it. 
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline Peter Staley

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Re: Gross dream - time for change!
« Reply #5 on: July 14, 2008, 11:22:57 AM »
Yes, switching to Viramune is another good option to consider.

Offline OneTampa

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  • "Butterflies are free."
Re: Gross dream - time for change!
« Reply #6 on: July 14, 2008, 10:02:32 PM »
I'm sorry to hear about your problems with Sustiva.  Given the dream side effects that you noted, I agree that its time for a change.

It appears that various people react differently to Sustiva. I believe that I mentioned previously elsewhere on this site that I have been on Sustiva  at a reduced 400 mg a day (along with Viracept and Epivir also at lower dosages) for over eight years--all fairly well tolerated.  Having always experienced pleasant vivid dreams since childhood, Sustiva did not alter my dreams.  My doctor mentioned years ago that research indicated that the reduced Sustiva dosage at 400 mg was just as effective at helping to keep the virus in check as the full 600 mg. The lower dosages of my medications may have also lessened the side effects for me.  I don't know.  My numbers (CD4 560 - 650) have been good with my viral load remaining non-detectable for the last 10 years straight.   

In any event, I wish you well and great success with the new regimen you choose.

"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Offline OutOfDarkness

  • Member
  • Posts: 90
Re: Gross dream - time for change!
« Reply #7 on: July 17, 2008, 06:05:32 PM »
Thank you for the suggestions.  I am leaning towards Viramune because it is in the same class.  I am so happy that I can change, my doc has made me paranoid about doing anything different.  Don't get me wrong, I think she is a good doc, but maybe a little too diligent about keeping her patients compliant.  Not saying I have had issues with compliance, just took a break once.

Mark, I have the same weight problems in those areas as well.  Did the weight change when you switched meds? 

2000 - seroconverted
2005 - cd4 350, VL 113,000
3/06 - started sustiva/truvada
3/08 - cd4 1,300 VL >50(undet.)


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