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Sustiva and Truvada
#218994 - 12/18/06 10:19 PM
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When I first started using Sustiva and Truvada the pills seem to be beating the virus. My doctor is concerned that my numbers (VL#'s) keep going up and down. One 3 month period they will be as low as 245 the next 945 the next 485 and then 644. My doctor wants to change meds but I am finally used to all the crazy side effects. I have been on this combo for a little over a year....have I given Sustiva and Truvada enough time to work?
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Blixer
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Legend
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Reged: 01/10/06
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Posts: 599
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Loc: Missouri
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Did you have any genotype resistance testing done prior to starting meds? I can see why he would be concerned. You don't state what your numbers were to start with. But normally, even with a very high VL to begin with you can count on being undetectable within six months. I'm not on the same combo, but I do take the sustiva. My VL started at about 67,000 and was down to something over 400 in two months and down to undetectable in three months. Have they been using the same lab all the way through? You can get some different results from different labs.
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David
Sustiva, Epivir, Videx EC
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Since4Ever
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Reged: 12/17/06
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Posts: 10
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Loc: Shenandoah Valley, Virginia
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Hi there! You mentioned your numbers and then wrote (VL#s) by which I assume you mean viral load numbers. If that's the case, those numbers are below what used to be undetectable. If you meant T4-cells, then the bouncing around might be statistically off, but what about the actual viral load? The direction of those numbers would be interesting to compare also.
I'll watch the thread and see if anything else comes back here.
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Cheers,
Since4Ever
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hhhmmm.....previous numbers were a little off so I gathered all the copies of the lab results, they are all from LabCorp:
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9-05 Absolute CD4 Helper 5......Viral Load 270,000
12-05 Absolute CD4 Helper 112.....Viral Load 468
3-06 Absolute CD4 Helper 128...Viral Load 958
6-06 Absolute CD4 Helper 165...Viral Load 459
9-06 Absolute CD4 Helper 225...Viral Load 1344
T-Cell ???? is that the same as the CD4 count that was mentioned...My doctor says that the only numbers that he is concerned with are the CD4 and the Viral Load and as long as the CD4 is going up that is a good sign but he still wants to switch meds...rather he is suggesting that we possibly do that. No to my knowledge he has not done the genotype(sp)? test. I also have CD3 and CD8 pos Lymph numbers
In May I had a breast removed because of breast cancer I thought that maybe the stress from that caused the spike in numbers, but he doubts it.
thanks for all the responses...it beats beating myself up mentally
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ScotCharles
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Reged: 05/06/05
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Posts: 924
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Loc: Los Angeles
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Poppets,
A viral load of a few thousand is nothing. These viral load numbers measure only the virus in your blood. There is thousands times that amount of virus lurking in your lymphatic system, your central nervous system, and in the interstitial spaces between your cells.
I've had viral loads as high as 474,000 and I'm still here. Right now my viral load is nearly 30,000 but my CD4 is nearly 400. I disagree with your doctors - it is the percentage of CD4 that is important. Your immune system is a complicated structure that works because of a number of cell types working together.
Relax. Quit watching the bouncing counts and live your life. Before you know it, the third act curtain will be coming down on your life and you'll wonder where the time went.
ScotCharles
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Life is a river.
Carpe diem.
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today i got more results back:
CD4........ 251
viral load.......1497
the dr said that he did do the genotype test last year when i was 1st diagnosed and i showed no signs of being resistant. he drew more blood today to see which of the meds that i am on is not working and that is the one he may change. he is still commending me on the remarkable progress that i am making and has taken me off Bactrim--yea team one less pill to deal with--he just thinks that i should be undectable by now. i am really not sure if i want to change my meds. i am curious which ones he will recommend so i can research it
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You need to see a new doctor.You probably have some resistance. Are you always on time with your meds? Have you ever been given a resistance test? Don't stop taking your meds but ask your doctor for a resistance test immediately. 10% of newly infected people have drug resistance to Sustiva. If this is your first regimen you should be undetectable by now. That's the goal and you should find a regimen that will work for you.
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Personally, I think you have given your meds well more than enough time. You said that at first they were beating the virus...and then all of a sudden they just stopped working correctly for you? Like some others have said it could be a resistance, but that would mean that if they were working for you in the beginning and then they weren't working you must've came in contact with someone that was resistant to one of the two. (having unprotected sex or breaking the condom, needles etc) Even though we are infected it is important that we keep our disease to ourselves for many of different reasons. You can get resistance to a drug simply by the person that infected you b/c they had a resistance to 'that' drug...keep in mind once you get a resistance buildup you can never go back to that medication or take any other kind that has that certain 'med' in it, which will eventually limit your choices. Another thing that you should look at when looking at your chart is your: CD4 % amount-that is more efficient and will tell you more than you #'s b/c your numbers still can change. I've been on med's since 02/05 and switched once in 08/05 to Atripla and within three months i was CD4: 619 and VL was undetectable. I dont have my chart with me so i cant tell ya the %. but I do know that at the beginning my VL:
200,000 then to
740,000 then got on meds -- then to
880 then to
75 and finally accomplished
undetectable.
You should seriously consider taking some classes that are provided to learn all that you can about this disease that you are living with and thats living inside you! Classes are free, educational and usually offer incentives free food and most importantly knowledge. I was reading an article once and it said: "Gay people are killing off their own by infecting each other." It's sad but true.
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Forgive me if I sound pedantic, but I recommend you go here (http://aidsinfo.nih.gov/guidelines/GuidelineDetail.aspx?MenuItem=Guidelines&Search=Off&GuidelineID=7&ClassID=1) to download the most recent guidelines and protocols for treating HIV. The PDF file at the top of the list of items contains over a hundred pages of recommendations and research on the clinical outcomes of a variety of drug combinations, as well as some expert opinions on how to measure the "success" or "failure" of a drug regimen.
Although the document is chock full of technical mumbo-jumbo, it's worth your time and effort to understand as much of it as you can, then follow-up with pointed questions to your doctor on the material you don't quite grasp.
My sense from what you've written is that your VL has bounced back after a fairly solid early response. Look at your treatment options and be prepared to consider the pros and cons of the next cocktail your doctor puts on the table. Doing so will make you feel more empowered; and the clinical importance of feeling like you're in charge of your destiny and not just a passenger on a run away train, cannot be overemphasized.
Take control, good luck, and I wish you every success.
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I am also on sustiva and my numbers also flip flop. When I was diagnosed my cd4 was 224 and my viral load was 78,000. After 3 mos my viral load was undetectable and my cd4 was 468. 3mos later, still undetectable but cd4 was 325. It then went to 589 now I'm at 460. It is fustrating but you must remember even people who are HIV- expirience this problem. My doctor warns me againt stress, smoking, drinking etc... He says lifestyle plays a big role in health and our immune systems weather were poz or neg . I think you might want to stick to this medication for a while and try not to worry, the meds will do their part. I wish you the best of luck !!!!
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Hi -
I think it looks good - your CD4s are continuing to climb - that is important and what I have read is that if the numbers for viral load are within a range of 3 times the number (e.g., ~150, 400, 1200) it can be considered the same basic number - the viral load is a log number that has a broad range and can change by time of day, exposure to colds and flu, stress, etc....I wouldn't worry - just continue to watch it and stay in communication with your Dr.
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I have read all of the replies to your question and there is some very good advice in some of them.
I was diagnosed a little over 1 1/2 yrs ago. And I am told that my Dr. is the best HIV Dr. in Minnesota.
He too did the resistance testing and I was put on Sustiva and Truvada within 1 month of testing poz. My cd4 # was about 375 and viral load over 500,000 when I started meds. My #s bounced around a lot over the course of the first year. Both he and my research nurse have told me that that is completly normal for them to do this.
As part of my treatment and info I was given, the Dr. was very insistant about being careful not to become infected with another strain of HIV. ie. "Always use condoms if engaging in any form of sex with other HIV infected persons. Because if you pick up another strain that is not controlled by your meds. It will multiply rapidly in your system and soon take the place of the strain or strains that you had in your body."
If your #s are not under controll. It may be a good idea for your Dr. to do new resistance tests to see if you have indeed picked up a new strain of the virus. He may need to change your meds if the results of the test indicate this to be true.
I have been very careful about casual sex since diagnosis and I've been lucky. My #s are very good, cd4 over 600 and viral load "undetectable". And my meds were changed to the new Atripla tablet since I am considered "Stable" medically. I have had fewer side affects with this new medication. And my reports are still very good.
Best of luck with your health.
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I did the geneotype testing back in december and i am guessing that my dr feels that i am stable with the sustiva truvada combo becasue he has not called me to tell me to change the meds. While me and my partner (also female) have recently went our own way, the chances of me having picked up another strain of HIV are impossible --i guess-- because she tested negative for HIV though the test was almost 2 years ago, I am farily confidant that she has not cheated and even more certain that she is not into casual sex with men. Though we have engaged in oral sex since i have found out i was positive, we have been together about 2-3 years before my diagnosis and my dr said that i have been positive for at least 10-15 years. Now that we have broken up I know it is going to take YEARS for me to find someone that will accept me and my "luggage" so casual dating is out of the picture for me for a while
thanks for all of the info and well wishes
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