POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: Bizkits on March 25, 2014, 10:49:16 am
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Ok...I'm a RN...I know better than to try to research this on my own and try to find an explanation but it's driving me nuts. I don't see my ID provider again until 4/14/14 and I have more lab work 3/31/14 at that. She is also out of the office for another 2 weeks so I can't even call to ask.
She ran this lab test on me, the "HLA-B Little W4" and I have NO clue what it is. My result was "Negative" so I contacted the lab which processed the specimen and they were kind enough to give me an answer: It's to test for sensitivities, hypersensitivities, allergies or reactions that are known ahead of time prior to starting treatment with abacavir.
So, naturally, as I know I shouldn't do, I looked up "abacavir", which I'm sure many of you know is Epsicom, Ziagen or Trizivir. From what I'm reading, these are older drugs with horrid sounding side effects and long-term effects like kidney and liver damage?!? Why is my ID Doc testing this if she's talking about starting me on truvada/tivicay, truvada/issentress, atripla or stribild? None of those contain that drug, do they? Or am I missing something? (I swear I'm going to kick myself for not just waiting and letting my doc explain it all...but now it's in my head)
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If Truvada doesn't work out the next option is Epzicom.
Epzicom (which contains Abacavir) is not an old drug with horrid side effects. It's got very few side effects and many people take it.
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So, naturally, as I know I shouldn't do, I looked up "abacavir", which I'm sure many of you know is Epsicom, Ziagen or Trizivir.
The only "older" med in that list is the AZT in Trizivir and Trizivir is rarely ever prescribed. It was only really ever prescribed for a few years in the early 2000s and I only know of one person who still takes it. I'm surprised they still make it to be honest.
Ziagen is the Brand Name for abacavir, which is the generic name for the drug.
Epzicom is marketed as Kivexa in some countries and also contains lamivudine, as does Trizivir.
There are a lot of different names; some drugs have three or four different names. They all start out with a trial name. Then they get a generic name, then they get a Brand Name and several meds have more than one Brand Name. It's confusing as all hell.
I actually made myself some flash-cards way-back-when and I always make sure I double check (when writing responses here) our med-list to make sure I've got the right drugs in the right pill. It's exhausting lol. http://www.aidsmeds.com/list.shtml
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Thanks, Ann
My ID provider showed me a paper chart with the same meds as listed on that page you provided a link to. It made my head spin then, too. I guess I'm not sure which meds are truly considered "old" or "new" being as how they all are spanning from roughly within the past 20-25 years or so? I see some from the very late 80's to early 90's to a lot from the early-mid 2000's (looking through all of them) and then a few from 2007-on. But then I associate "old" with the LTS's talking about how bad the side effects were during the first generations of these drugs. Aye. I'm sure learning a lot in a very short period of time. How long did it take you to finally get it all? Are all these tests you think (that I've never heard of) all precautionary you suspect? Thanks!
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Biz, any good doctor will run a whole slew of tests in the beginning, such as the hypersensitivity test, even if they're not planning on putting you on abacavir in the foreseeable - once the test is done it's done and the info is there on hand.
Other tests like resistance profiles should be run as a matter of course too, along with hep B & C screening and all kinds of other screening tests that might not be ordinarily run. I thought my doctor was going to end up bleeding me dry during my first few appointments. ;)
Any doctor who doesn't do this for a newly diagnosed patient is highly suspect in my book.
Stop worrying about the older generation of hiv meds. You don't live in a country where they're still often the only choice - you live in a country where they are no longer even offered. So relax on that score.
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Thanks, you're right. The only reason meds came up at all is because I was looking too far into what a certain lab test was when I should have just waited to go through them with my Dr. That's my bad. (And yes, on the lab note, I have given so much darn blood lately that I should be dried up by now...and still got more to go!). But what you say makes sense. :) Thanks.
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I'm sure learning a lot in a very short period of time. How long did it take you to finally get it all?
Sweetie, I'm still learning. Hiv is one of the fastest growing fields of medical science knowledge-wise and new meds have been coming out thick and fast in the past few years. As Joe K always says, living with hiv is not a sprint, it's a marathon.
There IS a LOT to learn and if I were you, I'd ask my doctor for his top two or three first-line combos, then I'd do a bit of research only on those particular combos, maybe asking a few questions here as well. That's what you should concentrate on now considering that is probably going to be the first decision you have to make.
You have the rest of your life to learn the finer points of being poz, so take things one step at a time and don't try to pirouette before you can even crawl. ;)
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You have the rest of your life to learn the finer points of being poz, so take things one step at a time and don't try to pirouette before you can even crawl. ;)
Lol! I have been known to fall flat on my face merely from walking on flat and level ground; I was behind the door when they handed out grace! Hmmm...maybe I should crawl, afterall. ;). It's just my personality, and especially being a nurse, I have a tendency to want to soak in as much information as possible as quickly as possible, like all the time. Also, it's my instinct to want to dive right in 2-feet-first and get to work. It's hard to slow down most times, but I regress, it's probably best I do in this case.
My Dr. said her "normal/go-to" first regimens are usually atripla, truvada/tividay or truvada/issentress. She said she likes those combos because they're generally very effective with few side effects and easy for patients' to take because they're only once or twice daily regimens. Of course, it's still subject to genotype and what the patient decides they can commit too. Also, she says if the patient has a specific request for whatever reason, she'll look into it and make her decision from there...you know, case-by-case.
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My Dr. said her "normal/go-to" first regimens are usually atripla, truvada/tividay or truvada/issentress. She said she likes those combos because they're generally very effective with few side effects and easy for patients' to take because they're only once or twice daily regimens.
The components of Truvada are in all three of these combos. Most people tolerate Truvada just fine.
Atripla is falling out of favour as a first-line treatment, due to the possible side effects (http://forums.poz.com/index.php?topic=47901.0;all) of the Sustiva component. Personally, I wouldn't touch anything with Sustiva in it with a ten-foot pole, but that's just my own opinion.
Isentress is twice a day and that can be a deal breaker for some. It is for me as I'm crap at remembering to take meds more than once a day. It seems to cause some headache and/or insomnia issues for some people, but most people taking it don't have that problem.
Tivicay is brand-spanking new, only recently approved for use. It has a very low side effect profile. My hiv doc is also an hiv pharmacologist and he's usually quite reserved about the new drugs, taking a more cautious wait-and-see approach. However, he's been really excited about Tivicay (dolutegravir) because of its efficacy and side effect profile. Another thing that really excites him about it is that it plays well with TB meds, something that many hiv drugs don't do.
I'm on Prezista, Norvir and Truvada, which is another once-a-day combo, but it involves three or four pills, depending on which Prezista pills you get. (The only difference is how many mgs they have in them.) It's also a very effective, low side effect profile combo. I'm happy with it.
Well, that's my opinion, hopefully others will chime in too so you get more than one perspective. Always keep in mind that your own mileage may vary.
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My partner is on Truvada/Issentress and that second pill at night is really a bugger sometimes, especially since we are a very active couple. He keeps it in his wallet with him and miraculously never forgets to take it...it's never at the same time, though, but never varies by more than a couple of hours at most. If I'm not the one reminding him, it'll just flash into his head and he'll be like "oh crap, it's time". Plus, if we're in a crowd or not in a convenient place where he can discreetly take it, it can prove difficult. (Then there's the small, but possible chance I contracted his strain in which case issenress isn't even an option). I say all this like 2 pills is a really big deal but from what I understand, in the beginning, it could be up to like 20 pills a day, at all various times? Eesh!
Thanks agian for all the good tips and viewpoints :)
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(Then there's the small, but possible chance I contracted his strain in which case issenress isn't even an option).
Why, is he resistant to Isentress? It only wouldn't be an option for you if you picked up an Isentress-resistant strain. You seem to be saying this is his current combo and if it is, then he's probably not resistant or they'd be switching the Isentress out for something else.
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The way I understood it is if I contracted hiv from my partner, his strain would be in me. While he is UD and has never stopped meds, hypothetically: his strain, now in me, that was on meds in him has now been off for a period of time. Therefore, could possibly be resistant to issentress for me, not him.
I think that's the way it was explained to me?
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I think that's the way it was explained to me?
By a contortionist?
My doc has been running a study looking at why VL blips** occur in people who are on meds and normally undetectable. My partner took part in this study and it involved a lumbar puncture so they could compare the levels of hiv in the blood vs the cerebral/spinal fluid.
**(A VL "blip" is a small but detectable viral load, which typically returns to UD by the next blood draw.)
You do know that hiv hides out from the meds in "reservoirs", right? One of those reservoirs is the brain, due to the blood/brain barrier that only some of the meds can cross (notoriously Sustiva, hence the CNS side effects). A lumbar puncture is an easy way to get a look into one of the reservoirs.
The theory is that occasionally hiv builds up in the reservoirs until the point where it "spills over" small amounts of virus into the bloodstream, which if the patient coincidentally has a blood draw at that same time, will register as what's known as a "blip".
When this happens, the hiv meds in the blood stream quickly mop up the "spill" and resistance does not occur.
Therefore, if you were infected due to a blip in your partner's VL, it wouldn't be a resistant strain, it would be a wild-type. Wild-type viruses do not suddenly become resistant to a med in a treatment naive, new host's body.
Clear as mud?
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Actually, no, that makes perfect sence. I've heard all the terminology before but it hasn't been pieced together and explained quite like that.
In a nut shell, my doctor told me essentially, if I had the same strain as my partner, I couldn't be on the same meds he was. (Which, I really don't want to anyway since his regimen is twice a day...I'm kinda hoping for truvada/tivicay, kinda scared of atripla with all I've heard about it).
So, when they genotype, are they just trying to find out if it's a known strain, or, wild as you call it?
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Biz, I don't blame you for not wanting to take Isentress because of the twice-a-day dosing.
However, I've never heard of a doctor telling a patient that they can't be on the same combo as their partner. I can't see how it makes any sense. There are plenty of poz couples on the same meds.
So, when they genotype, are they just trying to find out if it's a known strain, or, wild as you call it?
Read this* (http://www.aidsmap.com/resources/treatmentsdirectory/Drug-resistance/page/1280050/). It's peanut-butter-telly time** in my house and I'm too tired to summarise.
*Aidsmap is an excellent site for hiv info.
**Sung like Brian does in Family Guy. Seriously. Bones is on tonight in less than an hour and I need to go assume the position on the couch. Here's another technical term for you to learn: "telly" is British for TV. Just in case you weren't sure.
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I used to be twice daily
Now once daily
Once daily=more convinient
Mobile.eric
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Thanks again, Ann
That does appear to be a great website, though I don't think I am able to take all that in at once. It does make a little sense now, though.
I guess what I was thinking is that if I do indeed have my partners strain, and since not being on meds (in me) it has mutated, it would develop resistance to the same meds my partner is on, therefore rendering them useless for me. But it doesn't appear that is necessarily the case?
Sure, I get tele is television but peanut butter? lol.
I appreciate all your info and comments again, it helps a lot. Hope you have a great evening!
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At one point before treatment you will have resistance test done.
that will tell you a few things
An additional resistance test may be useful after you have started meds but before the VL goes below 1000
If you and your BF share the same intruder, that second resistance profile of YOUR virus should be same as the (unknown) current resistance profile of HIS virus and that should help docs in designing a better combo for HIM
I mean, I 'm making this up at 2 AM, so you may want to discuss with doc.
But if this works that would be cool
Hope this helps
Eric
modified to add : the line of thoughts that says :
- your virus is same as his current virus
- the virus came from semen
- the virus was thus shedding or even replicating in semen
- the virus not suppressed in semen while suppressed in blood
- the virus may have developped some resistance, in semen, to one of the drugs
- that (putative) resistance is thus transmitted to you
- your virus may have a resistance to (at least) one of his 3 drugs
that line of thoughts sounds legit to me
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If issentress is not an option for you due to confirmed resistance issues, then Tivicay is still an option
The European label for Tivicay, in that case, should be read carefully: it is TWICE daily (for people who harbour a resistance to RAL)
I got a little lost in studies... Is the PARTNER study finished and/or results published ?
Eric
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I got a little lost in studies...
Then maybe you should stop posting as though you understand them. It's not helping lately - at all.
Another thing that you do that doesn't help is when you start referring to meds by acronyms/initials. Yes, I know they often appear that way in studies etc, but most people, particularly newbies, have enough trouble keeping the Brand Names straight in their heads without you always adding in obscure acronyms/initials. Could you please knock it off? Thank you.
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Sure, I get tele is television but peanut butter? lol.
You've never heard of peanutbutter jelly time (https://www.youtube.com/watch?v=kXKVNw-NkSg)?!?! I just sing telly instead of jelly. Yes, really. To the cats. They all troop in and find their spots on the couch - usually on top of me!
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Hah! Family Guy! Should have known! I was thinking of the peanut butter and jelly song that made the olson twins famous back in the day! Lol! Good to know I'm not the only one that sings to their pets :) I'd like to say it's because I have a few marbles loose (makes it more fun that way).