Personal Journal: Documenting Journey Starting Meds

[survivor703]

Hello all,

If it’s ok, I’d like to document my first days starting treatment here in a journal style format. I hope that’s ok. I welcome commentary from any and everyone. 

Friday, May 2nd 2014

So after debating for weeks which med to start, I finally decided with the help of friends from poz.com and my general doctor. My doctor had his assistant call in my prescription on Truvada + Tivicay on Friday at a pharmacy near my job, so when 5pm hit, I took a deep breath, left work and headed to the pharmacy with the mentality of “Let’s do this!”

Well, when I got to the pharmacy, I was greeted by a southern girl with a heavy accent. “I’m sorry sir, we don’t have ‘tee-vee-cay’ in stock. It will be in first thing Monday. Would you like me to order it for you?” I declined. I figured I’d call around and see who else had this medicine in stock. So I checked with a pharmacy near my house, and I was told that they don’t even carry the drug period and don’t plan to. Very interesting. I was thinking, “wow, we’re off to a good start. I hope this isn’t any indication as to how getting meds will be every month.”

So it dawned on me to try walgreens since they advertise that the walgreens in dupont circle caters to HIV patients. Lo and behold they had it in stock. So, I set my navigation system and headed there to pick it up.  It went off without a hitch. I walked in, got my meds, and headed out the door. Yay! For some reason I felt empowered. Previously I used to feel that I had no control of anything now that I was infected with this virus that threatened to destroy my life.  But for once I felt like I had power over it.

Anyway, I decided to hold off on taking my first dose until Monday @ 10am, while at work. I kinda feel like I need to reserve a few days supply just in case something like this happens again with the pharmacy. Can you imagine if I waited the 30 days, then went to get my refill, and they told me, “sorry we’re out?” I could be putting myself at risk for resistance… no thanks. So instead of starting immediately, I’ll have a reserve of 3 days set aside in case this happens again.

I decided on 10am because I’m always up at that time. If it’s during the week, I’m at my desk, and I’ll have a notification reminder pop up. If it’s Saturday, I’m up getting ready for choir rehearsal, and if it’s Sunday I’m up getting ready for church. So I figured that’s the best time. I’m going to lock away a 20 day supply in my work desk, and keep the rest at home. So we’ll see how that goes.

SN: I hope this medicine helps with my congestion. I just always feel so stuffy, and I think it's because of systemic inflammation (e.g., allergies). Hopefully getting this virus in check will reduce some of the inflammation and as a result have some positive effects. I worry about my arteries thickening and such because of unchecked inflammation. I'm thinking of changing my diet to include more anti-inflammatory foods.

Well, that’s about it for now. I’ll report back in on Monday after I take the first dose.

Signing off,
Survivor

[tednlou2]

Just wanted to wish ya all the best with this regimen and hope it helps with the allergy issue.  Millions have allergy issues, especially with the "pollen vortex," but ya never know.  HIV could be causing a worse reaction than what you would have otherwise.

About the backup supply, I know most pharmacies and insurance will allow you to get refills a few days early.  Even for controlled substances, most pharmacies here allow you to refill on the 29th day.  I would imagine for all others, they may even allow a day or two earlier than that.  So, many can build up a backup supply that way.

Keep us posted on how things are going.

Ted

[Ann]

Hi Survivor. While there's no problem with you keeping this thread as a treatment journey journal, it's a better fit in the Treatments section of the forum. I moved it for you.

Good luck!

[leatherman]

Anyway, I decided to hold off on taking my first dose until Monday @ 10am, while at work. I kinda feel like I need to reserve a few days supply just in case something like this happens again with the pharmacy. Can you imagine if I waited the 30 days, then went to get my refill, and they told me, “sorry we’re out?” I could be putting myself at risk for resistance… no thanks. So instead of starting immediately, I’ll have a reserve of 3 days set aside in case this happens again.

1) because there are less than 2 million americans with HIV (and way way less than that actually on treatment!), most pharmacies do not carry HIV meds because there is no demand and they are expensive. However, as a regular customer, once you start getting your prescription filled at your local pharmacy, they should continue to restock it. I always turned my refill scripts in a day or two earlier, or called a day or two before to always make sure my meds would be in. In 22 yrs, after the first time at a new pharmacy, I have never had to wait for a refill because they didn't have it in stock - because I kept my plans to make sure it would be in stock.

2) do whatever it takes to build up a surplus. Earthquakes, tornadoes, snow storms, power outages, driver strikes, pharmacy foul-ups, delivery screwups, paperwork, lost prescriptions, no refills sent in, etc - there are a lot of things that can cause a delay from a day to two weeks. Every pozzie should have a back up - just in case. (A good friend of mine learned this lesson the hard way last week, when the delivery service (UPS) screwed up his regular med delivery - by a week!)

I know you've already made plans; but I would have done it differently.  Since the chance of mild side effects (nausea, gas, headaches, etc) is higher at the start (as you body adjusts to the level of the meds and as your viral load decreases) I would have started meds this weekend rather than waiting until starting off the work week. But too late now. LOL

Since I see that the meds options have weighed heavily on your mind over the last month, best wishes for this to be the best combo for you

[survivor703]

Just wanted to wish ya all the best with this regimen and hope it helps with the allergy issue.

Thanks so much tednlou... I really appreciate it. I'm hoping for the best with the allergies also. 

I moved it for you.

Ann, thanks so much! I don't know what this forum would be without your expertise! Thanks hun.

I would have started meds this weekend rather than waiting until starting off the work week. But too late now. LOL

hi leatherman, you're right. And that was the plan, until this pharmacy started jacking up stuff. lol. But yeah, it's too late now. Luckily my office is right across from the bathroom! 

[vertigo]

For a 30-day prescription, my insurance plan allows refills at the 25-day mark.  I suspect this is typical.  So each month you'll be able to build up your supply.

Also, many big U.S. cities have one or more pharmacies that specialize in HIV meds.  It sounds as though you may have found one.  Less likelihood of them not having your meds in stock, also they may be more likely to help out with co-pay assistance cards and the like.

Good luck with starting treatment.  I'm sure it will go great for you.

[OneTampa]

Welcome Survivor and good luck with your regimen.

Take care.

[survivor703]

For a 30-day prescription, my insurance plan allows refills at the 25-day mark.  I suspect this is typical.  So each month you'll be able to build up your supply.

Thanks Vertigo for this information. That is definitely good to know! I'll do just that, if they let me.

Welcome Survivor and good luck with your regimen.

Thanks OneTampa for the warm welcomes!

[absopozilutely]

Oh how cool we don't even have to go snooping under your bed to find your journal:) just kidding, I'm very happy for you!

[survivor703]

Oh how cool we don't even have to go snooping under your bed to find your journal:) just kidding, I'm very happy for you!

Haha! Good one... trust me, I have other journals. But you won't find them here OR under my bed. LOL 

[eric48]

Sending a welcome to meds gift ;-)

http://tinyurl.com/HIVPharmaCure-PS
http://tinyurl.com/HIVPharmaCure-PS1

I have tons of these (I use them for a lot of other things as well)

This is a must have. Sometimes I don't recall if I have taken the meds, so I can easily look through the pill scheduler

Timing: you may want to be strict on timing to get started. Once you are UD (most likely soon), you can be a bit more relax. My routine is : as soon as I wake up but no later than the backup alarm (checkpoint)

Good to hear you are on once daily: I hope it works for you. I also like the no food obligation, which allows to take your pills early in the morning and you can forget about it. If you have forgotten yo have an entire day to correct: I 've never missed a scheduled dose

Stock: you will find out how to play with the dates and build up at a rate of around 2 days per months

Your patient's log : good idea. I started mine some 4 years ago. Currently the most viewed thread in this section

Eric

[survivor703]

Monday, May 5, 2014

12pm hit, and I remembered, "oh gosh, I'm supposed to be starting my meds today." So I left for lunch with the pills in my pocket. I stopped at the gas station to get something to drink, and I went into the bathroom. I looked in the mirror, took a deep breath, and I did it. I swallowed the blue pill (truvada) and the little orange pill, the (Tivicay).

I can't believe I did it... this was a very big step for me. I must admit, however, that a lot of emotions and feelings are surging through me right now. The first and most important one is that this is everyday for the rest of my life, and I can't jack this up. I feel anxious not knowing if this will have side effects or anything crazy. I also feel empowered.... I feel like taking these pills is akin to taking a big hammer and beating the (BLEEP) out of this effin virus, and protecting my body from it.

So it's an hour and twenty minutes after my first dose, and I feel just fine. No side effects or anything. Let's hope this continues throughout the week. Thanks for all your support guys and gals.

Toodles!

[survivor703]

This is a must have. Sometimes I don't recall if I have taken the meds, so I can easily look through the pill scheduler

Timing: you may want to be strict on timing to get started. Once you are UD (most likely soon), you can be a bit more relax. My routine is : as soon as I wake up but no later than the backup alarm (checkpoint)

Hi Eric, you're right. I definitely need to get one of those. Gonna pick one up this week. And in regards to strict timing... I definitely understand. I do have one question regarding that. What if I wanted to very slowly inch the time up to a few hours earlier during this initial phase. Would that be okay? Say if I take it 30 minutes earlier each day until I get to the desired time, 10am-ish. I take it at 1:18pm now.

[mitch777]

Hi Eric, you're right. I definitely need to get one of those. Gonna pick one up this week. And in regards to strict timing... I definitely understand. I do have one question regarding that. What if I wanted to very slowly inch the time up to a few hours earlier during this initial phase. Would that be okay? Say if I take it 30 minutes earlier each day until I get to the desired time, 10am-ish. I take it at 1:18pm now.

Hi Survivor,

Since you have only taken one dose so far, I would just go ahead tomorrow and take the next dose at 10am.

[survivor703]

Since you have only taken one dose so far, I would just go ahead tomorrow and take the next dose at 10am.

Thanks for the advice Mitch. I was thinking of doing that, but I wasn't too sure. I don't see any harm in it though. Thanks.

[survivor703]

UPDATE: 2.5 hours in.

I feel really good.. almost euphoric. Nothing crazy... I just feel unusually optimistic, and full of hope. I just feel really in control of this virus and like it can't hurt me anymore. That is all.

Signing off.

[leatherman]

see? that wasn't so bad, was it? LOL

if I was you, I would just take the meds tomorrow at whatever time it is that you are adjusting to. (and speaking of time adjustments, when we leave daylight savings time, don't worry about the hour difference, just take your meds at your "regular" time.) don't worry too much about the exact time of taking your meds. There is a fair amount of leeway in taking once-a-day meds

personally, I believe a daily pill caddy and a pill fob are essentials to maintaining good health. (a pill fob is a little cylinder that will fit on your keyring. you never know when your busy life will keep you away from wherever you normally keep your pills. a dose dangling there with your keys can be a life-saver). I think the pill caddy helps newbies obsess about whether or not they took their pills, and helps a pozzie, after yrs of a pill-taking routine, "remember"  if they took meds that day or not.

my last piece of unsolicited advice LOL, if (if, if, if) after dose 2, 3, or 4, you do have some sort of side effects (nausea, diarrhea, headaches, dizziness, or something) don't freak out. Just hang in there until your body adjusts. But with some luck, and based on the statistics, you ought to be fine.

Stock: you will find out how to play with the dates and build up at a rate of around 2 days per months

Eric's stocking-up advice is spot on. In a few months, start thinking about how to get your script refilled a couple days early. Eventually, you'll have a few days worth of backup in rotation, for those just-in-case incidents

Your patient's log : good idea. I started mine some 4 years ago. Currently the most viewed thread in this section

another great note from Eric! when you get enough tests under your belt, Survivor, you'll be able to make graphs out of the data! I love graphs!

[survivor703]

Thanks for the reassuring words leatherman although just about 20 minutes ago, I found out that a Facebook friend of mine, Ron McAdams, passed away. I don't think he was on meds as he was a long term "anti-meds" person but started changing his minds towards the last few months, but I'm not too sure... So anyway that kinda killed my "high." I feel freakin manic. 

But I will press on in spite of. It just shakes me to hear of such news, you know? Reminds me that although this fight will be easier for me thanks to support and great meds, that it's still a "fight."

if (if, if, if) after dose 2, 3, or 4, you do have some sort of side effects (nausea, diarrhea, headaches, dizziness, or something) don't freak out. Just hang in there until your body adjusts. But with some luck, and based on the statistics, you ought to be fine.

Thanks for that advice also... I will definitely hang in there, and hope for the best.

SN: 3.5 hours in, no side effects

[leatherman]

Thanks for the reassuring words leatherman although just about 20 minutes ago, I found out that a Facebook friend of mine, Ron McAdams, passed away. I don't think he was on meds as he was a long term "anti-meds" person but started changing his minds towards the last few months, but I'm not too sure

wow. I'm so sorry to hear that news. 

But it shows a problem that just doesn't get talked about all the time - people are still dying of AIDS. Getting tested too late, starting treatment too late, going off meds, being anti-meds - people who think or act that way, well, they don't always make it.

In leaving you, your friend has left you a very valuable lesson. Learn this hard lesson and remain adherent to you meds. As I said before, I'm very sorry for the loss of your friend.

[GoForIt]

Hey Survivor.  Just thought I'd say hey because I have been on the Truvada Tivicay combo for about 8 months now. Just thought I'd share my experience so far. 

No side effects for me with it.  Dropped my VL very fast to UD.  Sometimes it can make you feel bloated or like you ate a meal/full for an hour or so after you take it but it goes away.  So now I just don't eat a huge dinner and take it right after because that makes me feel bloated. 

My doc has led a lot of the trials over the past 3 years with this combo and told me that all of his patients like this combo the best and have zero side effects in comparison to the some of the other medications.  So I feel more confident going with this combo.

I did a ton of research after finding out I am poz and got signed up with Ryan White & ADAP.  Now they pay for my health insurance premiums and meds which helps out so much because I thought I was going to be in debt for life after finding out my poz result and the cost of medications and doctor visits/labs. 

It does feel empowering to take the meds.  To have some sort of control over this at least.  I can say that I gained a lot of energy back and felt a lot better the first few weeks starting Tivicay Truvada.  Then things kind of planed out and I just feel generally a lot better than my last year was (oblivious to my status and not on meds)  Thank goodness there is help to beat this virus in the face with a mallet each day.

[survivor703]

In leaving you, your friend has left you a very valuable lesson. Learn this hard lesson and remain adherent to you meds. As I said before, I'm very sorry for the loss of your friend.

Thanks for the kind words leatherman. You're definitely right. I will extract that lesson from these unfortunate circumstances and continue moving forward. again, thanks for the uplifting words.

Hey Survivor.  Just thought I'd say hey because I have been on the Truvada Tivicay combo for about 8 months now. Just thought I'd share my experience so far. 

Thanks for your insight. After reading your reply, I feel even more reassured that I chose the right regimen. Fortunately I didn't feel bloated after taking the medicine. Heck, I didn't feel anything. #GRATEFUL!

Update: 11 hours later: No side effects @ 12:35am.

[eric48]

Ideally serum concentration should be maintained between the therapeutic level and the Side effect level. Due to accumulation, steady state level will be achieved in ca. 7 days, so, with the execption of very adverse effects that occur quickly (such as EFV odd dreams, rash...) the first few days can be expected to be usually trouble free.

Most of SE would come from the Truvada, anyway. Backbone NRTI is almost 20 y. old or more  for most of them, so there is nothing really new there.

Moving your timing upwards is never a problem. For intercontinental travels, I often move up 12 h. without noticeable issue. If you need to move backwards , the 1/2 h. step is OK; and, once again, as soon as you are UD, you can be more relax with this.

I keep 2 set of pills in backpack and same in the car (you never know...)

Altogether I prefer the early morning dosing ... You will find what suits you best

Eric

[leatherman]

I keep 2 set of pills in backpack and same in the car (you never know...)

don't forget to take those and rotate them out every so often. five yr old pills in the glove compartment aren't going to do you much good. LOL

[survivor703]

Most of SE would come from the Truvada, anyway. Backbone NRTI is almost 20 y. old or more  for most of them, so there is nothing really new there.

yeah, I was thinking the same thing Eric. And I know it's still early for side effects, but so far, I feel nothing and I hope it remains that way even after the seven day mark.

don't forget to take those and rotate them out every so often. five yr old pills in the glove compartment aren't going to do you much good. LOL

And you're right leatherman....  according to most stability studies. Heck, sometimes I wonder how stable these actives are if keeping them above room temperature (i.e., in a hot car, etc).

[survivor703]

UPDATE: 05/06/14

So far so good. No side effects of any sort. (slept like a baby last night, almost too good in fact! maybe this med helps me sleep?? Too soon to say. Will check back in later.)

Signing off,
survivor

[britchick]

Hi survivor,

Thanks for posting your story .

britchickxx

[survivor703]

Hi survivor,

Thanks for posting your story .

britchickxx

You're welcome britchickxx

[survivor703]

UPDATE: **3 days in**

No side effects of any sort to report.

[sumd22]

Hi survivor,

Thanks for the journal; I enjoy reading your updates.

Can you talk a bit about how you decided to go with tivicay/truvada over stribild?  In some previous threads, you were leaning toward it if I am not mistaken.  I am interested to hear what kind of information changed your mind.

Thanks!

[survivor703]

Can you talk a bit about how you decided to go with tivicay/truvada over stribild?

Hi sumd,

thanks for checking out my posts. I'm happy to know that it's helpful to you in some way. As for why I chose truvada/tivicay over stribild, I have a few reason.

1. Stribild has a 4th drug in it which amplifies one of the three ARVS. Unfortunately, this 'amplifier' amplifies many other drugs as well. So it makes using other drugs, OTC, antibiotics, or whatever, a little tricky.

2. The stribild has an NNRTI in it which can have possible CNS effects such as the sustiva in atripla, which is responsible for the depression and crazy dreams.

3. The drug is still new, and being that i'm a big guy, we didn't want to add any additional cardiac risk factors (i.e., some ARVs can raise cholesterol and increase insulance resistance, etc...) The regimen I chose is not very likely to do that. We're going to keep a close eye on it though, and I'm also making some lifestyle changes as an extra barrier of protection against that (diet/exercise).

Hope this answers your question. Let me know if I can help you in any other way.

[GoForIt]

Tivicay has been approved in adults and children 12 years of age and older and weighing at least 88 pounds. 

Tivicay does not require a meal when taking it.  Stribild does.

[survivor703]

**Day 4**

I woke up feeling a bit out of it... slightly light headed. I didn't get enough sleep, however (only about 4 hours); so I'm going to write this off as feeling tired/sluggish. Although I was tired, I stayed up doing work... so I definitely could have gone to sleep. (no insomnia). I can usually get away with 4 to 5 hours of sleep, but maybe my sleep requirements are changing now that I'm on meds? Don't know. I was seriously thinking about taking the day off and going back to sleep if I didn't have stupid meetings all day. *sigh* 

[buginme2]

Hi sumd,

thanks for checking out my posts. I'm happy to know that it's helpful to you in some way. As for why I chose truvada/tivicay over stribild, I have a few reason.

1. Stribild has a 4th drug in it which amplifies one of the three ARVS. Unfortunately, this 'amplifier' amplifies many other drugs as well. So it makes using other drugs, OTC, antibiotics, or whatever, a little tricky.

2. The stribild has an NNRTI in it which can have possible CNS effects such as the sustiva in atripla, which is responsible for the depression and crazy dreams.

3. The drug is still new, and being that i'm a big guy, we didn't want to add any additional cardiac risk factors (i.e., some ARVs can raise cholesterol and increase insulance resistance, etc...) The regimen I chose is not very likely to do that. We're going to keep a close eye on it though, and I'm also making some lifestyle changes as an extra barrier of protection against that (diet/exercise).

Hope this answers your question. Let me know if I can help you in any other way.

2.  No it doesn't.  Stribild does not contain an NNRTI. 

3.  Your reasoning here is a bit confusing since Tivicay has been on the market for less time than Stribild has.  In addition, Stribild has not been shown to affect cholesterol or cause cardiac issues.  Where are you getting your information.

Personally, I would choose Tivicay over Stribild so I'm not knocking your choice it's just your reasoning isn't very accurate.

Regardless, I'm sure you'll do very well. 

[Reggie]

Hi Survivor

Great to see your not having side effects, helps any of us documenting your journey who are on regimes with side effects. Great to hear and hope all continues well for you. Thanks for sharing.

Reggie

[survivor703]

2.  No it doesn't.  Stribild does not contain an NNRTI. 

3.  Your reasoning here is a bit confusing since Tivicay has been on the market for less time than Stribild has.  In addition, Stribild has not been shown to affect cholesterol or cause cardiac issues.  Where are you getting your information.

Personally, I would choose Tivicay over Stribild so I'm not knocking your choice it's just your reasoning isn't very accurate.

Hi buginme,

2. You're right... When I was typing the response, I had "complera" in mind, when I was writing about the Stribild. When I was deciding on which regimen to start, I considered complera, stribild, and truvada + tivicay.

3. To clarify my reasoning. I was comparing the general combination. For example, <truvada + integrase inhibitor> has shown favorable outcomes for many years when considering isentress as the integrase inbibitor. True tivicay is new, but looking at data for 96 weeks, by extrapolation it doesn't appear to be a threat, especially considering the low 50mg dosage.

The concept of truvada + elvitegravir +  cobicistat on the other hand is something new. True, the "booster concept" has been done with PI's (e.g., norvir/reyataz, etc), so it's not a totally new concept. However my doctor is still skeptical about the long term effects of stribild on cholesterol and blood sugar, so I took heed and wrote it off. Also stribild had a greater impact on baseline cholesterol levels, something I'd like to avoid if possible. We won't know for sure until we see more definitive long term data.

I think when my doctor says "cardiac issues," I think he's just referring to an increase in cholesterol or a possible increase in insulin resistance, which can lead to cardiac issues.

sources

Personally, I would choose Tivicay over Stribild so I'm not knocking your choice it's just your reasoning isn't very accurate.

Regardless, I'm sure you'll do very well.

Thanks bug. I'm confident that I made a good decision... and so far so good. I think it's going to all work out just fine.

Hi Survivor

Great to see your not having side effects, helps any of us documenting your journey who are on regimes with side effects. Great to hear and hope all continues well for you. Thanks for sharing.

Reggie

Hi Reggie, thanks for the support man. I will continue to document this journey for a while in hopes that it will help somebody.   

[survivor703]

**Day 5**

So it turns out that my "weird feeling" on yesterday was an anomaly. I think I was just tired. I will admit though, when I got home, I slept like a baby! I fell asleep at about 7pm, and didn't wake up until time for work today. I feel refreshed and great. There are still zero side effects. Once I get to 8+ days with no side effects, I will be happy. And of course based upon what my lab results say. 

happy Friday everyone!

[Reggie]

sounds like meds alright with you, nice to hear,best wishes

[survivor703]

sounds like meds alright with you, nice to hear,best wishes

Thanks Reg. yup, all is good here. I was 3 minutes late today due to a meeting that ran over, but other than that. It's all good. 

[leatherman]

3 minutes late

don't worry until you're 3 days late. LOL

I'm not suggesting you ever skip meds (although some have been tested and shown that <93% adherence is all that is needed to stay UD); but what I'm suggesting is that you don't obsess over minutes. A once-a-day pill can be hours "late" (and sometimes even days late depending on the time length of adherence) without any significance drop in meds levels.

so you can worry if you're 3 weeks late or maybe if you're 3 days late; but don't ever worry about 3 mins or 3 hours.   

[survivor703]

don't worry until you're 3 days late. LOL

lol, thanks leatherman... point taken!

[survivor703]

**day 6** UPDATE

1. Feels like I urinate more often than normal, but this seems to be subtle so it's hard to say for sure.

2. Chest pain? Feels like it could be trapped gas. Been going on since yesterday. Especially noticeable when I eat or drink.

3. Slightly decreased appetite.

[vertigo]

Hi Survivor,

I see that you're documenting your health very closely.  Just know that most of what you're experiencing are probably not side effects at all, just the normal variability in how we feel from day to day.  Everyone has days where they're tired, or gassy, or have headaches, whether poz or not.  I'm not trying to discount how you're feeling, but just to put it in perspective.

BTW, as leatherman said, strict med timing isn't that important. My pharmacist said +/- 2 hrs on dosing is fine.  I was pretty anal about timing in the beginning, but am not so now.

Best --

[survivor703]

Hi Survivor,

I see that you're documenting your health very closely.  Just know that most of what you're experiencing are probably not side effects at all, just the normal variability in how we feel from day to day.  Everyone has days where they're tired, or gassy, or have headaches, whether poz or not.  I'm not trying to discount how you're feeling, but just to put it in perspective.

BTW, as leatherman said, strict med timing isn't that important. My pharmacist said +/- 2 hrs on dosing is fine.  I was pretty anal about timing in the beginning, but am not so now.

Best --

Hi Vertigo,

Thanks for the reply. I think you're right... now that I think about it, I've had zero side effects, and I'm going into day 10. I'm VERY grateful! I just hope that I can keep this regimen for the duration of my infection and keep my viral load suppressed with no complications from the meds.

As for the timing, I've been very strict with it. I will probably be more lax after my first month or when I reach undetectable.

[survivor703]

Just an update... No side effects. I feel fine, life is good. Tomorrow, I go pick up another 30 day supply. (Zero missed doses for first month). Will be going next week to get blood work done.

[leatherman]

that's great to hear!

and like any good counselor, I have to ask: and how do you feel about that? Do you feel more "normal"? Do you feel like it's becoming just a daily habit to take your meds? Do you feel like you're less anxious yet? Do you feel that you had been overly-anxious or has this been really hard for you to handle?

I know you've got labs coming up and that's always an anxiety-producer. heck 21+ yrs into HIV meds, I still feel tiny butterflies the day I go back to get results. Or maybe it's excitement. LOL I've had results all over the place in all these yrs so it's hard to say exactly what the cause is; but I do get "tingly" sitting in the doctor's office waiting to hear those numbers.

so, tell us how you feel about being on treatment for close to a month now.

[survivor703]

and like any good counselor, I have to ask: and how do you feel about that? Do you feel more "normal"? Do you feel like it's becoming just a daily habit to take your meds? Do you feel like you're less anxious yet? Do you feel that you had been overly-anxious or has this been really hard for you to handle?

I feel like its becoming a daily habit, just like brushing my teeth or something. It's really not a big deal at all. And yes, I think I was overly anxious. My anxiety has definitely gone down. I go to the doctor on Monday, and I'm not even anxious about that. 

I have been feeling a little crappy lately though, in regards to nasal congestion. I've barely been able to breath trough my nose, and I'm wondering if this is some "IRIS" type inflammation going on with my immune system. I find myself getting really dependent on Afrin.... This is my third day taking it, but it opens me right up! But I know the possibility of rebound congestion is nothing to play with. So I'm not sure what to make of this severe congestion.... it's very annoying to say the lease... interrupts my sleep, causes me to have a sore throat due to breathing through my mouth so much.

Anybody deal with these issues before?

[absopozilutely]

Haha! Good one... trust me, I have other journals. But you won't find them here OR under my bed. LOL 

Darn, I was looking forward to all the juicy gossip

[leatherman]

I feel like its becoming a daily habit, just like brushing my teeth or something. It's really not a big deal at all.  I'm wondering if this is some "IRIS" type inflammation going on with my immune system.

um, where do you live? Here in South Carolina, between the pollen still going and dust (from the heat and dry), everyone I know is "stuffed up". LOL what are those damned bushes with white flowers (some type of hedge and beside the house bush?!?! Every time I leave my neighborhood (where there are none of those bushes), I can literally taste the pollen. ugh!

IRIS  happens when your immune system has crashed. The meds block the HIV from replicating and thus lowers your viral load allowing your immune system to recover. when it recovers it may fight a disease you actually had but your weakened immune system wasn't fighting. So it a way, you get sicker because you're getting well-er. LOL (healthier, o grammar nazis, I know well-er isn't a word LOL I was going with poetic license)

02/15/2012 CD4 502 21%, VL 69,134
04/10/2012 CD4 607 22%, VL 60,893
10/08/2012 CD4 615 15%, VL 155,981
03/01/2014 CD4 340 17%  VL 65,689

this is probably not the description of a crashed immune system that wasn't fighting off illness and is now having IRIS. If you had been below 200, maybe; especially if you had been below 100. But your cd4 trend and viral load, which aren't terrible at all for someone prior to treatment, have held pretty constant for over a year.

especially as time goes by, but also at the start of being dx'ed, you need to always be on guard that you don't attribute illnesses and problems to the HIV. As you age, and go through the seasons, you'll have all sorts of health issues that are age, and sinus, related. 

[survivor703]

um, where do you live?

I live in the Washington, DC area (northern Virginia part). So I went to the allergist yesterday to find out what I'm allergic to exactly, and I'm allergic to the following: most grass, weeds, pollen, dust mites. So he prescribed me some nasal sprays and some allergen medication, so we'll see how that goes. Now I just need to ween off the Afrin! 

On another note, it looks like something is going on with my blood pressure. I had it tested on this past monday when I had my blood work done, and it was a little high. I figured it was a fluke. But when I went to the allergen yesterday, it was high again. I really hope something funky isn't going on from the meds I'm taking.  Is increased BP a result of any ARVs?

[eric48]

( Is increased BP a result of any ARVs?

good question ...

Or of ARVs in general

I have seen mine go down at start of treatment (Viramune & Epzicom) then back to normal after 1-2 y. and now in the slightly elevated (140-90), but putting on weight did not help!

So I am staying with my regimen and still OFF BP treatment but... on diet !

Eric