POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: max123 on October 14, 2009, 04:32:52 pm
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hello everyone.
well, i have been spending the past few weeks getting use to being poz, and spending time educating myself about hiv and staying healthy. a special thanks to all forum members that responded to my previous posts and am hoping that all of you are well.
i just got a copy of my genotype & resistance testing results. unfortunately, i don't meet with the doctor for another two days to discuss them. in the meantime, i wanted to see what you all thought of them. the report notes that the clade is 'b' and the genotype results show that my hiv is susceptible to all meds in their respective classes, but, as luck would have it, there were two mutations noted for: nnrti 179d and pi 93l. this has me worried because i am still treatment naive and because the mutations involve 2 classes of meds: non-nucleoside reverse transcriptase inhibitors (nnrtis) and protease inhibitors (pis) .
from what i found on the stanford site, the 179d mutation affects about 1% of us (aren't i lucky?) and can potentially cause a twofold resistance to nnrti therapy. the solution to that problem appears to be a double dose of nnrti, whenever i begin treatment, but who knows? i also read that this mutation could induce a cross resistance among all of the nnrtis, significantly reducing treatment options. the 93l mutation is noted as being an 'accessory' resistance mutation. in the absence of having any other pi mutations, i'm hopeful that it simply means that there is nothing to worry about. in short, while the fact that susceptibility currently looks good, i'm feeling uneasy about the long term picture that these mutations may potentially have in store.
do any of you have any experience with or information about these mutations and their real life effects on hiv treatment and, or management. any info would be appreciated. thanks.
max
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hi all. i just got back from the id doc. she said that my hiv is essentially wild-type and that the 2 mutations found on my genotype testing (discussed in my previous post) are clinically insignificant... they should have no resistance effect on meds, come that time. the issue with both of them is something called a point mutation, where 1 amino acid is substituted for another. absent other documented mutations=no problem. this makes sense since the report stated susceptible to all tested meds. wow, what a relief!!!
max
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Max, thanks for the update......I was going to leave a post saying what you're doctor said but I wasn't 100% sure so I decided against it......the good news is you have available to you everything in the arsenal, which is excellent.
I think a good rule of thumb is that if the report says "Susceptible," or "Sensitive," or "No Predicted Resistance," then it's fine, since there will always be some mutations no matter what.
Do you have your numbers yet (CD4s and VL)?
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Hey Max, that's great about the results, full range of options open to you for med selection. I've been doing the same thing that you mentioned for the past few months....about getting educated about hiv, meds, tests, not to mention keeping it all together mentally!! Lots of great info and people here, was a god send to find this. Anyway, I'll be getting the resistance test when I do my next blood work in a couple weeks, so your topic here gets me started. Are you going on meds shortly? My second set of numbers bumped the wrong way so I may be having to face the meds decision sooner rather than later. Good luck with everything. esper
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Max, I was also thinking on those lines like Inch, but also wasn't sure. I meant to give Matt the Newt a poke via PM to ask him to weigh in, but it slipped my mind. (sorry!) But thanks for the update. Looks like you're good to go.
Ann
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hi inch & ann,
thank you both for the replies... i appreciate the thought that you both put into my situation. yes, you are right regarding the key word: susceptible, on my report. while this was a good prognostic indicator to me, being a newbie, the fact that the report actually even contained the word mutation freaked me out a little :o. unfortunately, there was little non-research info that i could find reflecting in vivo implications of what i now know are minor mutations. so...it was another two days living on the edge of my seat lol funny, i'm kind of getting use to that these days. i guess it's a desensitization thing. (see below for more on further comments on bloodwork, etc).
hi esper,
yes i saw that you were diagnosed shortly before me, so i bet that you are wresting with alot right now. trust me, i feel your pain. but, you are definitely doing the right thing by educating yourself, knowledge=power and agreed, this forum is a great thing. i haven't started meds yet. from what i've discussed with my doc & read on here and shared with members, my current numbers are pretty good right now (based upon my single cd4 & vl draws). my doc is deferring my next blood draw until 3 months. partly, i think this is because they allot 4 draws per year, but also, i've had the flu & pneumo vaccines in the preceding 2 weeks and just started the hep a & b vaccine series this past week. from what i understand, all of these vaccines have the potential of throwing off my lab values, so i figured that 3 months sounded reasonable. a grossly elevated vl count spurned on by the vaccines would definitely floor me, so waiting seems like the lesser of 2 evils.
from what i've read, the important numbers can ebb and flow, so don't get discouraged by your last higher vl count. maybe it's just a fluke or you had a cold or something that incited the spike. the general consensus here seems to be that the decision to start meds (if your numbers support this) should be based on a trend of at least 3 sets of labs, not just on 1 or 2. the other key things that fellow members have advised me of are meds still negotiable if vl<100k and cd4>350k. my doc also looks at cd4%. so, take some time if your numbers and physical health allow and wait until you can in fact, establish a trend before going on meds. that way you can weigh everything out and make an informed decision.
continued good health & spirit to all...
best, max
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You are rather new to all of this I gather. I have had a rough start fromthe beginning and that has made a very rough trail for me to go on. Right now ,actually fromm about three years after getting sick I could not take PI's for another reason . My Triglycirides were out the roof this is no mistake they were over 3000 yes 3000 hard to believe but true so from early on I have beenlimited from what meds I can take HIV meds that is. And to top that off I have another rare antithrombinIII defeciency that my HIV meds interfer with. So I am fighting two battles and I don't know which one is worse than the other because the AntithrombinIII defeciency has caused me more clotting since I have gotten the AIDS. I must have an angel watching out for me because I have had several DVT's and Three pulmonary embolisms. most people dye from one pulmonary embolism. I am lucky with all I have gone through so you have to feel a little lucky you don't have to go through what I have been dealing with. Good luck to you anyway and with all the new drugs they are coming out with for AIDS you shouldn't threat a bit. Just though i would let you know how tough our bodies can be if we have will power. Hang in there dude.
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hi jerry.
yes, i'm pretty new here and new to being hiv poz. i was diagnosed at the end of july 09 and an have been trying to establish myself in light of this major change in my life.
wow, it sounds like you've traveled a rough road with the emboli events....i admire your strength; those are some pretty tough odds to have beaten. i'm sure that the added bonus of your clotting disorder have made your hiv treatment much more challenging. but your current numbers certainly look good. tpa & the kinase drugs are wonderful things. thanks for sharing.
i appreciate the support & encouraging words. as we all know, this ugly disease we share can be devastating in so many ways, if we allow it that power. i'm doing all i can to stay ahead of it. thanks to so many of you long term survivors that have come into my life, both in my little world and here online, i have come to realize that so much has changed for the better for people with hiv, since the 80s & 90s. having hiv isn't necessarily the death sentence that it once was. you have all been an inspiration to me and are living proof that where there is life and an appreciation for it, hope can become a reality. i value that and it keeps me moving forward.
i don't look at my new life as one that's going to be easy. there will be many new challenges. so much headway still needs to be made towards treatment & a cure, which maybe we will see in our lifetimes, and maybe not. but, in the meantime, i will try my hardest not give in to this disease or let it define me.
stay well.
max
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Max:
That's great news about your results and you have a great attitude. I'm recently diagnosed as well (4/09) and have been on meds for a few months now. I have a Sustiva-resistant strain (so no Atripla) but my current meds (Truvada/Reyataz/Norvir) are treating me right so far: few side-effects and numbers moving in the right direction.
Regarding this site: it has been a wealth of information and inspiration for me and I'm sure it will be for you, too.
Are you planning on starting meds soon or waiting for some more results before deciding?
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hi ch.
yeah, i was definitely put at ease with the news of no significant mutations. i'm glad to hear that your mutation was only to sustiva. from what i've researched, there are some pretty resistant mutations out there that can be transmitted from the get go, so we are both pretty lucky.
as far as mention of my attitude, thanks....i'm trying. as you know, a poz diagnosis blows most of us away. it sure did me. in trying to mentally process & deal with all, i ultimately acknowledged that i'm still the same person....just plus a nasty little bug called hiv. trust me, i have my down moments too. this disease scares the shit out of me. but, i can't change what has happened, nor am i going to stick my head in the sand and let it run wild. like everything else in life when it comes to adversity, i'm going to deal with it the best that i can. in my novel opinion, taking a proactive stance in everything from taking care of myself to being a part of my medical care team and being my own best advocate is what i have to do to ensure my odds of surviving this thing with the best potential outcome.
i haven't started meds yet, though this has been the hot topic of my thought processes. i agree with the importance of waiting to get a 'trend' to see where my numbers are going before making that decision. the way my doc works, it will be a nail biting 9 months to get a set of 3 labs. i'm really torn between the 2 current treatment philosophies of starting early rather than later, both seem to have pros & cons. our moderator ann is living proof that sometimes meds aren't even necessary, eliminating the potential toxicity issue. what prompted you to start early? i'd really like to know your opinion about early start up.
take care.
max
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My ID doctor works at one of the locations where a lot of the work regarding the "starting when under 500 CD-4" study was done and she is a proponent of it. She emphasized that it was my choice since I was in the "gray" area but I was motivated to start. I knew there could be a chance of being a non-progressor and if I started meds, I may never know if I was included in that group. Nevertheless, the fact that I had two back-to-back sub-500 CD4 readings and moderate (not low) VL weighed the most in my decision-making. I also felt the need to be proactive and not just "wait." That is not the best reason to start but I'm sure that played into it quite a bit. So far, I don't regret the decision but I've only been taking meds for about four months now. No side effects so far and the numbers moved in the right direction after my first set of labs.
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hi again ch,
yeah, i know exactly where you're coming from. the first hiv doc i saw (for baseline blood results) also advised that treatment starting at cd4 500 is generally what she recommends. in fact, she was prepared to have started me right there on the spot if i had wanted to. interestingly, the second hiv doc i saw (for genotype results) told me that i should wait until cd4 is >350 but <500...she is older and was trained a longer while back. since they are both working in the same office, i wasn't sure who to listen to. i guess that's where the subjectivity factor comes in.
i know what you mean about the proactive thought process. playing the waiting game is definitely no picnic. but then i think about so many who had no choice but to start meds immediately upon receiving their first set of numbers (with cd4 values in the teens) and it humbles me back into a place of being grateful for the gift of time that i have in which to do so. i'm sure that your train made that stop along the way, as well.
i totally agree with you that you have to follow in the way that your comfortable with. i'm really glad to hear that you were ready for this and that you've done well on meds with no side effects, and most important, that your numbers are improving. that must be a huge relief.
stay well & keep us posted on how you're doing.
max