POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: julius on July 21, 2006, 02:44:09 pm
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Could some one please help? My daughter has been infected since birth, she's in early 20's now.I had a tainted blood transfusion that I didn't find out about until after her birth.
She had become treatment resistant to most so he tried the injections.
She has been on fuzeon plus 3 other meds for about 11 months. We just got latest labs and her CD4 is 257 VL is 10,000.He's taking her off fuzeon replacing it with sustiva and keeping the other pills the same. Help Help Help is this the way to go?!!!!!!!!!!!! The million dollar question huh?
Are her counts that awful?We're in a small town and the doc seems awfully wishy washy to me, although there aren't a whole lot of other choices around here.
Other than the numbers she has had no other complications for about 3 years which at that time were the occasional kidney infec. or "run of the mill" pneumonia.
Any words of wisdom would be so much appreciated to help a Mom here with a severely broken heart. Thank You
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It's difficult to say without additional information, (especially knowing what resistance she has). I'm sure someone may be of assistance to you here, but you may need to have access to her resistance reports. Her numbers don't seem "awful." The doctor may just be trying to prevent further resistance or an increase in the viral load, which may explain the change.
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Thank you Cliff.
Today's been a very trying day and just hearing a reply helps.
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Keep your head up. I'm glad you have found us. You should encourage your daughter to stop by sometime. I'm sure she could find the website and the forums, quite useful.
Take care,
Cliff
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I don't think your doctor would put her on Sustiva unless he felt it would work. But, if you are not too happy with that doctor, maybe you could try to find another one even if you have to drive for a few hours. In any case I am sure she is going to be fine, so hang in there! And feel free to post away here, and count on all of us here to give you and your daughter all the support you need. J.
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It's generally not a good idea to add or switch to Sustiva with a failing regimen if there is a possibility of resistance to the other meds that are being left behind because it will probably lead to rapid development of resistance to Sustiva and the other NNRTIs. It's hard to comment more on the treatment without knowing her treatment history and resistance test results.
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Dear Julius,welcome
I would like to echo what Gerry and Cliff have has said about more info. Resistance is not absolute. Sometimes mutations that cause resistance can make some drugs work better...
Practical suggestions:
1. If your daughter has taken Sustiva before, or another drug from the same class (NNRTIs, there are only two others that are in general use - Viramune and Rescriptor), refuse the switch until...
2. ...the doctor orders a resistance test for both genotypic and phenotypic resistance. The first examines the genetic make-up of the HIV infection to see which drugs should work against it, the second tests the actual virus against different drugs to see how well they suppress replication. A resistance test may take up to 3 weeks to return a result, and is done with a sample of blood. Then...
3. ...post the resistance test results here. People will then be able to make more informed comments and suggestions.
4. Get a second opinion.
5. Have hope. There are several new drugs just licensed or soon to be that are resistance beating.
Best wishes
- matt
Now playing: Robbie Robertson, Golden Feather
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Thank all of you again for responding, I can't believe that I finally found a place that you all know what I'm going through.
I have been so frightened for the last 20 plus years and now I might have found hope..
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Julius,
How are you? You've been dealing with your own infection too for all these years. How has that been? I hope you're well and I hope to be hearing more from you - and about you too, not just your daughter. I understand your concern for her, I'm a mother myself, but you have to take care of YOU too.
I'm glad you found us.
Ann
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That's the bad thing in a warped way. I am doing excellent,my cd4 s are 1500 and my viral load has been undectible for 6 years. Of course I'm happy but there's also a terrible sense of guilt, at the risk of sounding melodramatic I can't help but wish I could switch places with her. Sometimes I find myself thinking if only I wouldn't have had the blood transfusion we wouldn't be living this hell.Okay that's the part of me that never gets to come out! That let out a flood of tears that I didn't even know were there today.
The realistic side of me thanks God that we are still here and compared to others are very lucky so far.
Thank you for letting me vent.
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Julius,
You're more than welcome. I'd like to invite you to post in the Living forum. That forum gets more traffic and hence more replies. Feel free to start a thread over there to introduce yourself.
And as a mother myself, I can totally relate to what you're saying. Let those tears come - tears can be very healing so don't bottle them up, ok?
Hugs,
Ann