Need help identifying a med

[minismom]

Does anyone know which medication had to be taken on an empty stomach (no food 4hrs before or after) and was mixed with either liquid Maylox or Mylanta?  Was it ddl?  I've searched the drug info here, but everything is in pill form.

I'm trying to run down all of Mim's previous med combos and I can't remember what this one was called.  I only remember working it into her newborn feeding schedule was horrific and that she prefered it to be mixed in black cherry Mylanta.  I also know it wasn't Viracept.  She was on that, too, 1 scoop of powder 4 times / day.  That stuff didn't dissolve in anything and always made her burp dust clouds.

Anyway, any help would be greatly appreciated.

Mum

[leatherman]

Hi Mum,
Yeppers, sounds like ddI (http://www.atdn.org/simple/dida.html particularly the bottom of that page under "childrens version") which says "Children's Videx comes in cherry or mint flavor and must be mixed with an antacid"

randy and i both took the "adult version" back in the mid 90s. It came as big tablets (2 at a time), mostly antacid and the size of drink coasters, that had to be crushed using a mortar and pestle. In the end you had about a 1/4 cup of "chalk dust" to mix into liquid to drink.

I just realized that I'm actually still on this medication to this day , only now it's videx ec and it's an average sized capsule ("containing coated microspheres instead of using a buffering compound") that I take once a day. Woohoo!

[minismom]

Thanks, Mikie!  It's interesting that the FDA says that Videx should NEVER be mixed with Zerit, but on the website you provided, it recommends a combo that includes videx + Zerit.  Very interesting.  As an infant, Mim was on both Zerit and ddI.

Now that my list is complete, I'm trying to get her various combos put together.  I'm hoping to be able to post them soon.

Thanks again!
Mum

[leatherman]

Videx should NEVER be mixed with Zerit, but on the website you provided, it recommends a combo that includes videx + Zerit.  Very interesting.  As an infant, Mim was on both Zerit and ddI.

i didn't know that and come to think of it (you're really making me have to think back to the distant past of my treatment regimens LOL) I was taking zerit along with the ddI too! I became resistant to zerit (and epivir and ziagen, etc) and dropped them long ago so I don't always remember all those meds as well. (I bet I could only tell you half the meds when I was taking 32 capsules of stuff per day!! I'm glad to forget those days and those meds.  )

Wonder when the FDA put out the announcement about not mixing the meds vs. when mini was taking them?  When I was on them both (then zerit was brand new) it's quite possible it wasn't known to not mix the meds. Perhaps mini was prescribed it too before the interaction was known. Whatever reason the FDA had, thank goodness it must not have affected mini or me in a bad way. 

It'll be interesting to see your completed list. Maybe it'll refresh my memory , since mini and I seemed to be on many similar meds. When I was taking alot of them those years ago they were only in liquid form too, probably just like mini's meds - except without any flavoring! LOL 

[Peter Staley]

I believe the Zerit/Videx contraindication warning is only for pregnant women (it was issued in 2001, I think).

Here's the bullet on the AIDSmeds Videx page:

Combining Videx with Zerit (d4T), another nucleoside reverse transcriptase inhibitor (NRTI), may increase the risk of developing lactic acidosis. This is especially true in HIV-positive pregnant women who take both of these drugs together. In turn, the U.S. Food and Drug Administration (FDA) has recommended that HIV-positive women not take these two drugs together while they are pregnant.

source: http://www.aidsmeds.com/archive/Videx_1585.shtml

[minismom]

Peter, thanks for the link.  If you scootch up a bit, it says that when you mix Zerit and Videx, it causes an increase of side effects.  The aggrivating part is that we have no idea what sorts of side-effects Mim went through as an infant since she couldn't tell us what she was feeling.

Mikie, I have the list completed, I'm now going through our records to see when she was taking them, in what combinations, and for how long.  That's the "fun" part..lol.  All I have to go by right now are her pharmacy records of what I had filled and when.  I also have a 5-subject notebook full of notes that I used in court.  You're right about the memories - I'd like to forget, but it's a great reference to see how far she's come.

Mum

[leatherman]

I'd like to forget, but it's a great reference to see how far she's come.

Unfortunately, I really have forgotten alot of my meds. Back in 1998 when I was 34, I didn't think I was going to survive long enough after that second hospitalization to reach 35, so I let a lot of things slide in my life. Tracking my taxes and all those meds were two things I didn't bother to keep on top of.

However, I did take these pictures of my meds in June of '01 and posted them to my blog. (as I get older and with so much that's happened, I'm glad I have that blog, or I wouldn't be able to remember when anything happened over the last 10 yrs LOL)  I don't even remember what half of these pills were anymore. LOL But I remember I took the pictures, because even though it was still quite a handful of pills a day, I wanted my mom to see that this regimen was a huge improvement and had about 10 fewer pills than the previous regimen.

I still use this same pill container to this day (Wow! I've been using it for nearly 14 yrs now!) but I'm down to so few pills now that I use the first two slots for one day and the second two for another day. Where I used to barely be able to sqeeze a week's worth of pills in that container, now I can get two weeks worth of pills in at a time.

Tracking mini's meds is just another one of things that you do that should help you not feel guilty about the things you "didn't" do. Do you know how hard it is to track meds, care about meds, or even take meds when you're really sick? Though mini has been through a lot, there you are keeping track, keeping records, getting the right form of the solution to give her, even helping her take the meds when she wasn't big enough to hardly eat.

Any of us would love to as lucky as mini to have such a great mommy watching over and helping us fight this disease.

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[minismom]

Here's the list I've come up with so far: AZT, 3TC, d4T, ddI, Kaletra, Sustiva, Viracept, Viramune, ritonovir, epivir (I don't think this one is avaliable any more), and abacavir.  All of these (except Viramune) were done in the first 18mths of her life.  Doesn't seem like much when I look at it..LOL.  I'm still trying to work out what her combos were and how long she was on them.  I have the notebooks tucked away in a container in my barn - may take me a while to find those.

Mike, I know what you mean about keeping up with meds.  When she was a baby, her meds (except Viracept) were liquid.  We bought a bunch of baby pacifiers that were designed to hold liquid medicines.  Then, we bought a bunch of colored dots and a package of card stock.  We made a one-week chart on the card stock.  We'd fill her medicine noopies and put a colored dot on it with the time of that dose.  Every med had a different color.  When we gave her the med (we wore watches with alarms and had alarms set in the living room and our bedroom), we pulled off the sticker and put it on the chart.  Then, we refilled the noopie and put on another sticker with the time of her next dose.  Anywhere we went, we carried the chart, stickers, and her meds (in an insulated pouch since everything had to be kept cold).

How far we've come to her just popping 2 pills with breakfast, 1 pill at lunch, and 2 pills at bedtime. But, that better be changing next month. (either the meds will change, or her PID will change)

Mum

[minismom]

Sorry, I forgot about the liquid iron drops she was on for her anemia.  She was eventually taken off the iron supplement because she was still enemic on it.  I didn't follow that logic then, and I don't follow it now.

 Anyway, I also forgot about the Bactrim.  This she took 3x / day on Mon, Wed, and Fri.  She was on it until she was nearly a year old and developed an allergy to the sulfa in the med.  She wasn't put on anything else even though her VL was still over 2mill. and her T-cells were around 250.

Mum

[lonewolf]

Bless her heart,  Mimi is certantly a strong little soldier with a fantastic mum!
Your family is quite a inspiration to us, and encouragement to me as well.

Hugs,  Bruce