Author Topic: Now It's My Turn (Read 8256 times)

BlueMoon · « **on:** February 21, 2008, 11:30:58 am »

Hello everyone. I've been reading the forum for several weeks now, as I prepare for life with HAART. The main thing I've learned is to not anticipate too much, and take it as it comes.

I took my first HIV test in early October, in the hopes of a negative result so I could reassure a friend. That didn't go as planned. My first blood test a month later wasn't so good either, with a CD4 count of 204 and viral load of 229,000. The next test four weeks later was worse, 157/273,000, and a resistance to one of the components in Atripla. Apparently I've been infected for a few years at least, possibly as many as fifteen. I haven't shown any symptoms yet and would not have known if not for the test. I found out late, hopefully not too late.

In early January, I was prescribed Truvada, Reyataz, and Norvir, which seems to be a common regimen. I applied for help from the state drug assistance program, and didn't receive my first batch of meds until Tuesday. I can see now that dealing with that will be an ongoing headache.

So tomorrow after work, I'll begin medication. I'm a bit nervous about side effects, especially diarrhea. I've seen Imodium mentioned here a few times, so I bought a package of that. Since some of the meds need to be taken with food I've decided to take them in the evening after work, with dinner. I have a physically demanding job and often crash early, so it doesn't seem like a good idea to medicate before bed.

I'm open to any suggestions about dosing schedule, food choices, and side effects. For now I have nothing to contribute, but I'm sure that will change as I gain experience.

Best wishes to you all, and feel free to comment as you see fit.

thunter34 · « **Reply #1 on:** February 21, 2008, 11:39:54 am »

Hmmm...not my combo, so I can't offer any particular advice on that one. I can, however, bid you welcome to the forums.

BT65 · « **Reply #2 on:** February 21, 2008, 12:09:30 pm »

Blue, welcome to the forums.

I was on a Truvada/Lexiva combo, and had virtually no side effects. Grew resistant to it, however.

You might want to have a looksee at this: http://www.aidsmeds.com/list.shtml/

It might be a starting point. Sorry I can't offer more.

Robert · « **Reply #3 on:** February 21, 2008, 12:17:23 pm »

Hi Blue.

I'm taking those same meds and they're not bad. They're somewhat forgiving, in fact. I take my meds with breakfast in the morning. I feel fine most of the day. I'm tired by the end of the day but I think that has more to do with my lungs (I had PCP, pneumocystis carnii pneumonia and that did a good job of scarring up my lungs. I don't smoke but boy do I have a hard time breathing just climbing the stars. Not a pretty sight for someone who used to climb mountains.) You mentioned you had a particularly demanding job. I don't think these meds should affect it too much.

I figure the meds are pretty strong because I still have strange dreams when I go to bed 12 hours later.

Diarrhea is not an issue. Sometimes I get backed up (constipated) but that's not too bad.

I continue to each pretty much what I want. My cholesterol is sky high. Before meds my cholesterol was a non-issue and pretty much nonexistent (60). Now it's well over 200 and I can't get it down. I am not taking any statins. I figure I'm taking enough pills as it is.

For me this particular regimen is has particularly effective. I started out at 18 t-cells and after 4 years am up over 500. I became undetectable after 4 months.

Good luck with your drug assistance program. Sometimes they can be a little daunting. l ususally don't have a problem but last week when I went to get my monthly supply not one person in the pharmacy (I use Kaiser) knew about ADAP, much less how to process it. I was there over 2 hours waiting.

And welcome to the forum.

robert

Miss Philicia · « **Reply #4 on:** February 21, 2008, 12:29:03 pm »

Quote from: BlueMoon on February 21, 2008, 11:30:58 am

Apparently I've been infected for a few years at least, possibly as many as fifteen. I haven't shown any symptoms yet and would not have known if not for the test. I found out late, hopefully not too late.

My numbers were very similar to yours when diagnosed, and I'm still here 15 years later. I really think you'll be fine, just be very self-disciplined with your treatment, and pro-active with adjusting to your situation mentally.

What state are you in? That's annoying that they did not have an "emergency" expedited med form for you to obtain you first month's medications immediately pending final paperwork approval like we do here in Pennsylvania. Perhaps once things calm down you might inquire with your state's Ryan White entity why they don't implement something along that line.

Queen Tokelove · « **Reply #5 on:** February 21, 2008, 12:39:41 pm »

Welcome to the Forums, Blue. I am not on the combo you've stared but am on Atripla and Ziagen. My doc left me on Atripla even though I am resistant to one of the meds in it. It has still worked great for me and wish you success upon starting your meds. Look forward to hearing more from you.

Iggy · « **Reply #6 on:** February 21, 2008, 03:26:47 pm »

Sorry to not offer you any specific advice in direct response to your question, but wanted to echo the greetings you have received.

Also suggest that you explore the link Betty provided.

AlanBama · « **Reply #7 on:** February 21, 2008, 07:23:16 pm »

Welcome, and I hope that all goes well with your new meds. Let us know how you're doing.

hugs,

Alan

bocker3 · « **Reply #8 on:** February 21, 2008, 07:46:04 pm »

Welcome!

I'm on Reyataz/Norvir and Atripla -- so almost the same as you (I just get to add the dream filled Sustiva portion). It's been a very easy and effective combo for me. Although I do admit that sometimes I wish I didn't need food with the Reyataz -- I take Rey/Nor in the morning with breakfast and my Atripla before bed. My bilirubin went up quite a bit at first, but then it came back down before I ever turned yellow. It's been high normal since 6 months on it.

As for the diarrhea -- I've taken fiber supplements, religiously, twice a day since I started and have had virtually no problems at all.

Good luck -- and let us know how it goes.

Hugs,
Mike

dgr20002 · « **Reply #9 on:** February 21, 2008, 07:47:48 pm »

Hi BlueMoon.

I take Reyataz now and have no problems. I have had Truvada before and no problems with that either. Norvir used to upset my stomach and slight diarrhea from time to time. Good luck the new combo and welcome to the forums.

David

Winiroo · « **Reply #10 on:** February 21, 2008, 07:54:19 pm »

I started the same combo several months ago.
I also decided to take my meds at bedtime. I had some trouble initially with vomiting, diarrhea and yellowing of the eyes.
I rarely puke now and the diarrhea was never an issue because Imodium was enough to take care of it and the yellowing of the eyes is not liver damage but rather a side effect of the Reyataz.
It was minor, I’m sure I was the only person that noticed.
The upside to the combo is that my tcells have been steadily climbing and my viral load immediately went to undetectable.
One suggestion I got for the Norvir was if it is sitting heavily on your stomach take it with a warm drink like coffee or cocoa. It worked for me, melted the pill in my stomach so that it didn’t bother me.
I’ve grown accustomed to it now so I have no troubles stomaching them regardless of what I drink to take the pills.

Best of luck.

Wendy

anniebc · « **Reply #11 on:** February 21, 2008, 09:07:01 pm »

Hi Blue

Welcome to the forums.

I'm on the same combo and pretty much had the same problems that Wendy had in the beginning and I also take my meds at night.

With any Combo it takes a wee while for the drugs to settle down, I don't think you will have too many problems , just give them time.

Keep us informed when you start and let us know how you are coping with them.

Hugs
Jan

BlueMoon · « **Reply #12 on:** February 21, 2008, 10:19:52 pm »

Thanks for the welcome and encouragement. I have very little experience with doctors and medicine, so this is a whole new way of life for me. It's a creepy feeling knowing I have the virus in me, and a badly-compromised immune system, so I'm ready to get on with the program. I would have started two months ago had it not been for the red tape.

I considered dosing in the morning, as breakfast is my most regular meal of the day, but for now will see how evenings work. I've also wondered about splitting the doses as Bocker3 mentioned. Would that lessen the side effects without reducing effectiveness? I've been on Bactrim since early December to prevent PCP. I guess that will continue for at least a few more months.

I'm already on a healthy diet including high fiber, so I'm hoping that will mitigate the side effects. I'm disappointed that I wasn't prescribed Atripla/Sustiva; as a former psychedelic warrior, I was looking for forward to the interesting dreams.

BT65 · « **Reply #13 on:** February 21, 2008, 10:27:03 pm »

Blue, the most important thing is to take your meds every day around the same time-whether you 'split the pills up' or not.

The Bactrim was given because of your low t-cell count. Once your t's go up, and if you've never had PCP, you might be taken off.

Good luck and please keep us posted.
Betty

aztecan · « **Reply #14 on:** February 21, 2008, 10:37:37 pm »

Hey Bluemoon,

Welcome aboard, glad you found us.

Betty is right, take the meds at the same time each day. It will keep the meds working as they should without opening a window for resistance to develop and get you used to taking them without missing doses, etc.

Here are a few links regarding the meds, just in case you would like more info on the individual meds

http://www.aidsmeds.com/archive/Truvada_1584.shtml

http://www.aidsmeds.com/archive/Reyataz_1563.shtml

http://www.aidsmeds.com/archive/Norvir_1561.shtml

I took Reyataz/Norvir and never had a problem. Remember that while side effects are possible, they are not guaranteed and many people escape them altogether. I hope you fall into this category.

Keep us posted on how things are going with the meds and in general.

HUGS,

Mark

BlueMoon · « **Reply #15 on:** February 21, 2008, 11:03:44 pm »

Thanks for the links. I've already read them, as I've been reading extensively -- or more like obsessively

-- on the disease and treatment. But all info is appreciated. By the way, Betty's link didn't work.

This is getting ahead of things a little, but if I decide to change my dosing schedule, should I take an extra dose, or skip one?

BT65 · « **Reply #16 on:** February 21, 2008, 11:05:44 pm »

Sorry about that, Blue. I must have typed it in wrong. But, I'm sure from what you're saying, you're doing well on your homework.

Longislander · « **Reply #17 on:** February 22, 2008, 12:30:44 am »

Hi Blue, welcome to the forums. I wish you great success with your meds. It's unfortunate you've had to dive in head first, but you seem to be doing the right things. Finding this place will prove to be a great help.

Paul

Jacques · « **Reply #18 on:** February 22, 2008, 12:36:02 am »

Welcome BlueMoon,

I'm have been on the same combo for almost two years now and just love it !
No major problems. In fact I consider this combo to be much more easy to handle than my previous one (kaletra/combivir).

I don't suggest splitting the doses. Bocker3 is doing so because of Sustiva (part of Atripla) that is best taken at bedtime.

Quote

if I decide to change my dosing schedule, should I take an extra dose, or skip one?

As it is your first regimen, I think that an extra dose would be better than skiping one but be aware of possibly increasing side effects on that day. So I suggest that you wait a few days before making the switch. You could do it on a weekend day(or a day that you are not working), take your dose at noon, then in the morning the day after. The transition would be smoother.

Good luck, and please give us news,

regards
Jacques

bocker3 · « **Reply #19 on:** February 22, 2008, 07:14:47 am »

Hey BlueMoon,

I would prefer to NOT be splitting my doses, as I believe the simpler the better. I split because I need to take the Sustiva portion of the Atripla at bedtime -- I get a bit spacy for a couple of hours. I tried taking the Reyataz then too, but given my constant struggle with weight gain, I didn't want to have a "medical reason" to eat food just before bed.

If you have a once a day regimen -- best to take it all, once a day.

Hugs,
Mike

beaubrent · « **Reply #20 on:** February 22, 2008, 08:44:58 am »

>"For now I have nothing to contribute"

You are wrong. Your entire post is a huge contribution. The thing that makes taking the next unfamiliar step easier is knowing someone else has done it and you've done that for someone else. Give yourself props for that.

BlueMoon · « **Reply #21 on:** February 25, 2008, 09:08:33 pm »

Three full days on meds (Truvada/Reyataz/Norvir) now, and I haven't noticed any effects at all. It feels good to be taking action, and I'm looking forward to the next blood test. I should be able to post new results in four weeks.

Well there is one side effect, a headache from dealing with the state drug assistance program and my insurance company....

dgr20002 · « **Reply #22 on:** February 25, 2008, 09:12:55 pm »

That's great news.

David

Snowangel · « **Reply #23 on:** February 25, 2008, 09:38:06 pm »

That' great, Blue Moon. I just came off those meds and they worked good for me too.
Take care, Snow

BlueMoon · « **Reply #24 on:** February 25, 2008, 09:45:49 pm »

Snow, I see that you're on Atripla now. Why did you change?

Snowangel · « **Reply #25 on:** February 25, 2008, 09:51:00 pm »

I am still undetectable but my cholestrol went up from 199 to 237 and my doc didn't want to put me on another pill. If I have any problems with the Atripla ,he said I should be able to go back to those 3 no problem. I am glad to hear they are working for you too. I had been on them since 03 when I found out I was pregnant and have been undetectable the whole time.
Take care,
Snow

BlueMoon · « **Reply #26 on:** February 25, 2008, 09:57:50 pm »

Ah, cholesterol; another complication I need to become familiar with.

Good luck with the Atripla. I was disappointed to not get it. I was looking forward to the buzz.

Snowangel · « **Reply #27 on:** February 25, 2008, 10:08:30 pm »

LOL...Yeah, the dreams are a trip too

BT65 · « **Reply #28 on:** February 25, 2008, 10:14:18 pm »

Blue, I'm glad you're doing well with the meds.

My cholesterol shot up last year and the doc put me on Lipitor. That got it under control pretty quick. Since I'm now on Kaletra (and Trizivir) I don't know what that will do to it. But I'm not overly-concerned. Just something else to deal with.

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Author Topic: Now It's My Turn (Read 8256 times)