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Author Topic: Is This Really A Wash?  (Read 4895 times)

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Offline tednlou2

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Is This Really A Wash?
« on: May 07, 2014, 05:22:31 PM »
Isn't this basically the same?

CD4 at 588 and 21% and CD4 dropping to 459, but CD4% going to 25%?  My viral load even dropped from 28k to 22k, which I know isn't much change.

Offline mecch

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Re: Is This Really A Wash?
« Reply #1 on: May 07, 2014, 05:25:50 PM »
And yet by the numbers alone 459 is below 500, so recommended treatment. So a tangential question is, ---- is the question is the change "a wash" or is the question "is it time to make decisions when to start?" ?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline AusShep

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Re: Is This Really A Wash?
« Reply #2 on: May 07, 2014, 05:55:58 PM »
IDK, but CD4 < 500, and CD4% < 28 (even though they don't use the % alone anymore if there is a count) both indicate it's time for treatment.

I don't remember and didn't go trolling through your posts to see why you've chosen to wait, but it seems like you're trying to rationalize not starting at this point.

Offline buginme2

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Re: Is This Really A Wash?
« Reply #3 on: May 07, 2014, 06:57:41 PM »


I agree with AusShep.

If you are calling this a "wash" to rationalize not starting it's not a very strong argument.   

Your absolute count still decreased.  Your cd8's also decreased to where now your cd4's make up a slightly greater percentage than they did before.  That doesn't discount that both your absolute count and percentage both indicate its time to start popping some pills. 

Not to mention the fact that you have had pneumonia a few times.  You should have started awhile ago.  Maybe it's time for a come to Jesus moment if your having anxiety about starting.
Don't be fancy, just get dancey

Offline vertigo

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Re: Is This Really A Wash?
« Reply #4 on: May 07, 2014, 07:43:56 PM »
It's not a wash.  Yes, your percentage went up a little, but the absolute number dropped below 500, which is considered significant as far as the treatment guidelines go.

Personally I used CD4 <500 as the cutoff for starting meds.  It only took 14 months to get there, in my case.  Looking back after a year on treatment, I kinda wished I had started even earlier.  In any event, it feels good and empowering to have an undetectable viral load.  Both from the standpoint of my own health, and from knowing that I'm not infectious to others.

Both your absolute CD4 count and percentage are below the normal range, and you're not going to find much in the literature supporting a decision to hold out longer.  Be glad you live somewhere where you don't have to wait until dropping below 350 or some other archaic threshold.

Offline tednlou2

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Re: Is This Really A Wash?
« Reply #5 on: May 08, 2014, 01:41:51 AM »
When recommendations were moved to 500, I said I would start at least by then.  It is apparent that time has come.  If I'm right, I've had HIV since 2001 and have known it since 2008.  The question was asked why I've held off so long.  I had pretty good numbers from 2009-2013.  The trend downward began to pick up steam in 2013.  I no longer had CD4 readings of 600-800.  My CD4% was staying in the low 20's.  My viral load had ticked up over the years from 9-15k to staying in the 20k range.  I was dx'd in 2008, after getting very ill with pneumonia.  But, since then, I had nothing but a minor sore throat here and there.  Well, until September 2013, when I got a small bout of pneumonia. 

It was that time I decided the time to start was in my near future.  My CD4 was hanging in the high 500's and I was nearing my own benchmark of 500.  I met to go over regimens again, since there were new ones since I last discussed meds in 2009.  I was researching Complera and Stribild.  At my next appointment in January, I told the doc I was leaning toward Stribild.  I figured I would wait for this lab report to make the final decision.  I have been researching Trivicay and Truvada, since I read comments about some preferring that regimen over Stribild.  Trivicay and Truvada was never discussed with me.  That may be because I said I preferred a one pill a day regimen. 

I just learned my doc called in Stribild, after I saw him in January.  I was never informed of that.  I said I was leaning toward it, but we didn't discuss actually starting right then.  I found out, because it showed up on my EOB.  I asked the pharmacy and they said they sent one of those, "your prescription is ready" calls.  I had another med on auto refill that I no longer needed, so I assumed that call was for that.  Long story short, they restocked the med and placed it in my file.  I thought it was customary to have labs done 2-4 weeks after starting, to check for toxicity.  That never happened, which would have tipped me off.  It does make me wonder about my doc.  He assumed I had been taking it since late january.  Anyway, I can fill the Stribild at any time. 

At this point, I do feel beginning to debate Stribild over Trivicay and Truvada will only serve to delay starting even more than I have.  I've said I was concerned I had gotten too use to having the virus and not taking meds.  I guess I've thought I've felt pretty good, all things considered.  I've blamed any lack of energy on depression.  While I'm hesitant, I am also looking forward to starting.  I do believe I will feel better and realize what I thought was feeling pretty good was not.

Offline AusShep

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Re: Is This Really A Wash?
« Reply #6 on: May 08, 2014, 02:18:21 AM »
Thanks for the background summary.

Time to bite the bullet and fill that Rx. 

HIV is tricky, you can think you feel fine up until the day before you end up in the hospital with less than 50 T cells and OIs attacking you on all sides. 




Offline BT65

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Re: Is This Really A Wash?
« Reply #7 on: May 08, 2014, 02:49:35 AM »
It's time to start, Ted.  Just do it.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jmarksto

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Re: Is This Really A Wash?
« Reply #8 on: May 08, 2014, 09:38:37 AM »
Ted; You have had a good long run without meds - from comments on the boards here, most people think they should have started earlier once they are on meds and start to see the improvements.

With regard to Stribild vs. Truvada and Tivicay......if it were me I would take the time now to evaluate the two.  While I haven't done my due dillegence on the two, my brief understanding is that the T&T combo has one less drug and a newer (less side effect??) drug - both of which would lean me towards that combo.

Best,
JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD
11/03/14 CD4   711/34%   VL UD

Offline bocker3

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Re: Is This Really A Wash?
« Reply #9 on: May 08, 2014, 10:24:49 AM »
Ted,

I have never regretted starting treatment - though I did start within a couple months of testing poz.  My fatigue went away almost immediately.  Your results and your doc are sending pretty clear messages.

While knowledge is important, please don't use "more research" as another way to postpone.  Analysis paralysis is really just another rationalization technique.  EVERY med has some potential side effects - but they don't hit everyone.  I have been taking Sustiva since day one.  Some folks simply can not take this, but it has been perfect for me, with no side effects, save the occasional weird dream.

The time has come - start kicking the viruses ass!!!

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Jeff G

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Re: Is This Really A Wash?
« Reply #10 on: May 08, 2014, 10:35:38 AM »
Ted, The time has come - start kicking the viruses ass!!!

Mike

True . Come on in Ted, the water is fine . 

Offline Kardean

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Re: Is This Really A Wash?
« Reply #11 on: May 08, 2014, 11:24:51 AM »


 That never happened, which would have tipped me off.  It does make me wonder about my doc.  He assumed I had been taking it since late january.  Anyway, I can fill the Stribild at any time. 

[/quote]

I think it odd that the doctor was presumptuous with Rx.  Did he even do a Resistance test prior to?  In any regard I'm sure you will make a wise decision for yourself.  Keep us updated!

Offline vertigo

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Re: Is This Really A Wash?
« Reply #12 on: May 08, 2014, 01:28:35 PM »
While knowledge is important, please don't use "more research" as another way to postpone.  Analysis paralysis is really just another rationalization technique.

This is the takeaway if we're going to continue to debate the merits of Stribild vs Tivicay/Truvada.  They're both good choices.  As I mentioned in another thread, the fact that we're able to debate the rather finely nuanced pros/cons of very similar meds is a luxury.  If your doc has already sent in the rx for Stribild, I would just go ahead and get it filled.  Yes, it has an extra drug to make it work, but the convenience of only taking one pill and managing one rx is real.  Just go for it.  Good luck!

Offline WowThatWasLifeChanging

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Re: Is This Really A Wash?
« Reply #13 on: May 09, 2014, 11:30:41 AM »
I take truvada and 2 other pills and although its 3 pills its once a day so not any less convenient than one pill once a day. (Other than the 3 cost more)  I was very nervous about starting meds and didnt sleep the night before I was going to ID to make final med decision and pick them up. My cd4 is 450. My doc told me to pick up from pharmacy and begin taking when i was mentally ready. (i started same night) The scary thing for me was once you start you are all in for life! But I found comfort knowing that with the meds the "life" part would likely be a lot longer if I just start now before getting sick. I wish you the best of luck! 

Offline tednlou2

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Re: Is This Really A Wash?
« Reply #14 on: May 10, 2014, 12:54:16 AM »
Thanks all for the replies.  Since I got my latest labs and coming to the realization it is time, I have had chest tightness.  I guess it is anxiety.  I did make an appt with the pharmacy folks at the doc to discuss Trivicay and Truvada.  I really want to know more about all the possible med interactions I could run into with Stribild vs that regimen. 


Offline tednlou2

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Re: Is This Really A Wash?
« Reply #15 on: May 16, 2014, 01:43:34 AM »
I met with the pharmacist counselor at my doc today, and I don't think I came away feeling any more decided.  My partner, Brian, would not be doing research and all that.  He's the type who just takes what his doc prescribes.  He doesn't even know the names of many of his meds or which one does what.  That can be a good way sometimes, but also dangerous.  He was recently taking one drug twice a day, thinking he was taking the other, too.  He will be trouble, when he's elderly. 

Anyway, when I met with them last fall, Tivicay wasn't an option yet.  As I said, I had been leaning toward Stribild.  But, I wanted to learn more about Tivicay.  The discussions about the Cobicicstat in Stribild also made me want to learn more.  One member here said his doc was hesitant about Stribild, since it was so new and that it boosts other drugs.  He (I think Survivor) said his doc said if he needed to use some steroid, he could possibly develop diabetes due to higher serum amounts of the steroid. 

Here was what the pharmacist said--

First, why worry about possible drugs I may need in the future?  There are interactions with certain statins, for example, but there are other statins that can be used.  If I really needed some med in the future where no other med would work, I could switch off Stribild.  Of the meds I take now, Prozac and hydrocodone would be expected to be boosted.  However she acted like it was not significant.  She said some will be more sensitive to it and others have no issue.

She said if I fail Tivicay, then Stribild would most likely be knocked out.  However, if I fail Stribild, Tivicay is still an option.  She also said Tivicay will likely be paired with Epzicom soon, as a one-pill regimen.  We discussed Tivicay with Truvada and with Epzicom.  Of course, I would need to have the HLA test done to see if Epzicom likes me or not.  She says Epzicom doesn't have the renal and bone issues Truvada has.  That made me wonder why I see more people discussing Tivicay with Truvada.  It would seem like one would want to avoid the possible side-effects of Truvada.  Is it the issue with needing the test for Epzicom?  Are there other downsides to Epzicom?  She said if the test shows I'm good with Epzicom, then it would be very unlikely I would have a bad reaction. 

She was obviously more favorable of Stribild.  There were med students in attendance.  They, too, seemed to like Stribild better, while all said Tivicay was a great way to go too.  It could be me already having a Stribild script at the pharmacy that swayed their view.  I spoke about that a few posts back.  In late January, my doc called in Stribild without informing me.  I just recently found out.  The pharmacist at the doc office said she had been curious why I had been on it since January, yet still had a vl of 22k.  She says she's the one who handles the labs to check for toxicity and that the drug is working.  She couldn't explain why she hadn't called to make that appt.  Btw, she said guidelines were moved from checking that 2-4 weeks after starting to checking 6-8 weeks.  Not sure if that's true. 

So, I guess I'm still leaning toward Stribild.  I mean, I still don't understand all the drug interaction ramifications.  I don't want to run into a situation where docs are having to use less effective drugs or cautiously watching doses of common drugs.  I don't want to be sick from taking an anti-depressant.  She did discuss serotonin sickness or something like that, where you have too much serotonin.  But, she acted like that would be extremely unlikely.  It would seem easier to just avoid all those possible issues by going with Tivicay and Truvada.  I don't plan on failing a regimen, but knocking out Stribild, if I failed Tivicay,  is also something to weigh. 

Offline AusShep

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Re: Is This Really A Wash?
« Reply #16 on: May 16, 2014, 02:09:17 AM »
So are you going to start Stribld tomorrow?  Or keep second guessing yourself for a year... 

I do agree with the pharmacist, why worry about interactions with drugs you're not now taking or may never need, there are other options for them.

Offline vertigo

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Re: Is This Really A Wash?
« Reply #17 on: May 16, 2014, 03:13:30 AM »
OK, I guess we could prolong the misery here with more long dissertations on how we might each individually prefer one regime vs the other, but it seems kind of beside the point.  They're both good choices.  Pick one.

The runaway consensus in this forum is that you should start.  Dr Gallant thinks you should start.  Your own doctor obviously thinks you should start.  (And I have a feeling that him calling in an rx while you were still officially undecided was not a mistake.)

There is a new poster in another thread -- a doctor -- who did his research and then decided on Stribild for himself.  Take it for what it's worth.

Eventually, if you wait long enough, the decision will be made for you.  Don't let your health get run down that far.  Just start.



« Last Edit: May 16, 2014, 03:21:37 AM by vertigo »

Offline bocker3

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Re: Is This Really A Wash?
« Reply #18 on: May 16, 2014, 07:42:36 AM »
Ted,

This is nothing but a stalling tactic.  You can pick any combo and find a reason why your might "second guess" it.  I know that you are a question-er by nature, but this is beyond even your normal inquisitiveness. 
The time has come, a decision must be made.  Stop with all the what-ifs.  The one thing that is a CURRENT truth -- the virus is taking its toll on your body right now.

I understand your nervousness but, trust me, a few weeks/months after you start the meds, you will look back and wonder why you waited so long to start.

Make your choice, and take that first dose!!

Good luck,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline zach

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Re: Is This Really A Wash?
« Reply #19 on: May 16, 2014, 08:58:17 AM »
flip a coin ted... coin toss is law, trust the coin to make the call

your options are down to six one half dozen or the other, and it makes little difference. you could analyze one over the other all day, or you could do some other math.... even be a little conservative with this.

everyday that you don't take meds, what is your VL doing in this time? its replicating like mad! and CD4? the tipping point between feeling ok, and feeling like sick death, is an instant

but man, you know all this, you don't really need us to coax you into this, just go get your meds. blue pill/red pill, only you can make that choice

Offline buginme2

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Re: Is This Really A Wash?
« Reply #20 on: May 19, 2014, 03:34:30 PM »
Are you still hemming and hawing?

You stopped replying to your own thread.  Have you come to terms yet?
Don't be fancy, just get dancey

Offline Jeff G

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Re: Is This Really A Wash?
« Reply #21 on: May 19, 2014, 06:26:52 PM »
What about it Ted ? We are concerned you know... so don't leave us hanging .

Offline tednlou2

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Re: Is This Really A Wash?
« Reply #22 on: May 20, 2014, 02:06:13 AM »
I wanted to thank everyone for the responses and concern.  It does mean a lot.  I'm still working on it and feel I am getting there.

While it may seem I've had years to do this and that I've been "hemming and hawing," I really only began to see the writing last fall and REALLY only began to seriously get my mind into starting and picking out a regimen just since I posted this thread.  So, it has only been a little over a week that I felt I was at my own benchmark to start and that I better start taking it seriously.  It has been a process.  If you look back through my posts from last fall, I said several times I knew meds were nearing.  But, I kept switching it back to the back burner.  I've said for a long time that I did worry I would get too use to having HIV and not taking meds.

So, I have been doing a lot of reflection.  I've been taking a multi-vitamin in some attempt to get use to taking another pill.  I heard some suggest that, so why not.  I've asked why do I and so many others have this hang up with HIV meds.  I may read the printout of other drugs, but I take them.  I may be on those for years or life, so why the difference?  I called the pharmacy to have them go ahead and fill the Stribild, but I hung up.  I am the type who will stand in the store for 20 mins looking at two different products, reading the ingredients and what each does.  After I buy it, I will wonder whether I should have bought the other.  If there are 3 options, then I'm debating for 30 mins what to buy.  Ok, I'm usually only that bad for an expensive item, like a TV.  But, big things do require time.  I do wish I were more like my partner.  If he were prescribed HAART, he would fill it and take it.  He would not comparison shop or worry about certain issues with one or the other-- unless his doc said one could be a problem. 

So, I'm getting there.  I hope.  I know some will feel I should have made the decision a long time ago and what's all this about only seriously taking it serious in the last week or so.  It is what it is.  The recommendations changed faster than I did.  My therapist recommended filling the script, saying I could build up a supply.  He thinks it would be empowering to fill it and that seeing it sitting on the night stand would make it more real.  I think I will follow his advice.  Of course, I think that would make the decision on which med.  I don't think my insurance would then pay for Tivicay, after paying for Stribild.  So, I will have made the regimen decision by filling it.  It will just be down to me taking it. 

Thanks again.  Even if the tough love can be a little off sometimes (like I am at 200 or something and need to make a decision today), I do think I need assertive views.  For example, I asked Dr. Gallant the same question about it being a wash.  He did believe the two labs basically expressed the same situation--CD4 down, but CD4% up.  If he left it at that, I would have clung to that.  But, like y'all, he said to stop the trend counting and start.  And, even if the recommendations had not changed, I am at that point I had promised myself I would start. 

Offline bocker3

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Re: Is This Really A Wash?
« Reply #23 on: May 20, 2014, 08:00:01 AM »
Ted,

I am not in your head, so I can't really know what is going on inside, but it seems like you are simply building this up to be bigger and bigger the longer you wait.  It sounds like you have settled on a med, so now it's a matter of taking that first pill.

The night I started, I followed my therapist's suggestion -- Sid and I went out for a nice dinner to CELEBRATE.  What were we celebrating, you ask??  The fact that I was taking control of my body back from the virus.

We had an early dinner, so that I could wait a few hours before taking the Sustiva (empty stomach) & Truvada.  When the time came, I had them in my hand - was just staring at them and sighing.....  after about 10 mins, Sid said - just stop it and swallow them already -- finish the celebration!!  I did.

Looking back now, it wasn't the "taking meds forever" that I struggled with, it was taking the first one.  THAT is the tough part -- once you get past that one you are good.

So -- CELEBRATE taking your body back and just swallow it!!

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline mecch

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Re: Is This Really A Wash?
« Reply #24 on: May 20, 2014, 08:39:10 AM »
Your story about how you mull over purchases. And the anecdote about hanging up rather than putting through the prescription.

I too can mull over purchases.  There have been periods in my life when I was even less effective at making decisions because of stress and anxiety, and what I would do is ask experts to "help me make decisions." 

When I wasn't in top form after a big relationship split, I got friends to go shopping with me, for new appliances and what not, and told them the list of things I needed and I got it all, painlessly and quick enough, and no regrets.

I had legal questions and went to a lawyer and he gave me the expert information and his opinion and I took it.

I had mental health issues and got a shrink and she gave me expert info and opinion and I took it.

Sometimes we can indulge or flatter ourselves, thinking we have more value to contribute to a decision, than our knowledge and experience supports. 

Also, important to recognise when you - one, we - are in situations where, at the end of the day, there is not, in fact, a vast choice. There's only a few choices, and no perfect choice.  We don't have as much free will "to decide" - its more just moving forward.

There are many situations in which people in the know present the info to us, make their recommendations in our best interests, and we can save ourselves time and frustration just taking advice and "picking" something and moving on. 

It sounds to me that your challenge is more moving on, not so much the choice of combo.
« Last Edit: May 20, 2014, 08:47:42 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Kardean

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Re: Is This Really A Wash?
« Reply #25 on: May 20, 2014, 10:09:11 AM »
Ted, I so understand you as we VERY much think alike, but I know you will make the right decision under your own terms as well as it should be.  I too chose to put off treatment from the very beginning until the recommended numbers unless I began symptomatic or ill.

However, unlike you I never looked at my numbers as a "wash".  For example, my last lab CD4 was at its lowest ever, 780 but my percentage was at its highest, 56%.  I've always carried an exceptionally high CD4 percentage for which I've never understood nor given any explanation.  Even if this trend continues, I would  start treatment once my numbers got near the bottom of the normal reference range.  In other words, if I had 26% against the 780, or an absolute of 500 with a 56%..... I would start.

Again, I know you will make your own decision in your own way and in your own time.  I for one respect that. 

Keep us informed!

Offline mikeyb39

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Re: Is This Really A Wash?
« Reply #26 on: May 20, 2014, 01:07:55 PM »
This guy seems to keep returning with same questions just to get a response.  I say its your body/life take it when you want.  The lower your CD4'S get the harder it is to get them back up, not to mention the damage a high VL could be doing to your body with inflammation.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline vertigo

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Re: Is This Really A Wash?
« Reply #27 on: May 20, 2014, 04:07:17 PM »
Ted, just a guess, but perhaps your hesitation to start meds is because doing so makes HIV "real" for you.  While by forestalling treatment you can half-pretend it's not there.

If that's the case, I can relate.  I would have loved to be a slow progressor and gone many years without treatment.  But I wasn't, so I didn't.  As it turns out, I think starting meds was a critical juncture to me feeling better emotionally about being poz.

There's always going to be a new, better treatment right around the corner.  A tweak to an existing drug, a new class in development, maybe injectables instead of pills.  Always another reason to delay.  Intellectually I'm sure you know all this.

I think it will prove empowering and satisfying once you finally start, but only you can get yourself to that place.  Best wishes.




Offline buginme2

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Re: Is This Really A Wash?
« Reply #28 on: May 20, 2014, 04:36:30 PM »
You know most people who are given a prescription by their doctor stop at the pharmacy on the way home and start taking their medicine that day.  They don't spend years preparing and taking practice vitamins.

There is something really wrong Ted.  I don't mean to be a dick but your thinking is way off here.  I'm afraid your going to analyze this back and forth forever until you get sick. Weren't you just in the hospital for pneumonia? 

Thousand of people post here every day about how starting meds was a non event.   Yet, you're paralyzed with fear.  And its literally killing you. 

Don't be fancy, just get dancey

Offline mecch

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Re: Is This Really A Wash?
« Reply #29 on: May 20, 2014, 04:59:02 PM »
Just want to say, Ted has been an active member here and there is no sign that he does not see HIV as real.

I think this is a glitch of anxious thinking...

But what do I know, Ted it's your mind.

I say, model your bf's m.o. in this case, and get on with it already. Leave the technical stuff to your doc and if there's any adjustment to make down the road, it will be made.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tednlou2

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Re: Is This Really A Wash?
« Reply #30 on: May 21, 2014, 02:13:21 AM »
This guy seems to keep returning with same questions just to get a response.  I say its your body/life take it when you want.  The lower your CD4'S get the harder it is to get them back up, not to mention the damage a high VL could be doing to your body with inflammation.

Your post was confusing, as I didn't understand who "this guy" is.  Were you referring to me?  I first thought you were referring to Kardean, but he didn't post any questions about his situation.  I haven't been returning with questions to get a response.  Confused. 

You know most people who are given a prescription by their doctor stop at the pharmacy on the way home and start taking their medicine that day.  They don't spend years preparing and taking practice vitamins.

There is something really wrong Ted.  I don't mean to be a dick but your thinking is way off here.  I'm afraid your going to analyze this back and forth forever until you get sick. Weren't you just in the hospital for pneumonia? 

Thousand of people post here every day about how starting meds was a non event.   Yet, you're paralyzed with fear.  And its literally killing you. 

I wasn't given a prescription.  I found out some three months later one was called in and just learned it was a medical intern who did it-- with the blessing of my doc.  That alone was another anxiety wondering whether I can count on my doc, when I started meds.  No follow-up to check for toxicity and whether the med was working, not to mention not even having the conversation about starting and letting me know he was calling it in. 

I know you are a big believer in starting immediately and that view appears to be right.  When I was dx'd, I was told by my HIV doc and online docs that there was no rush to start, as guidelines were 350.  When it was changed to 500 (which was only half saying 500 I think), I was again told I was fine and I should only start if I really wanted.  There were many saying there was probably little benefit to starting above 500, except to be less infectious.  So, while I have wondered over the years whether I was making the right decision, I was not hemming and hawing over starting.  I was perfectly fine with waiting, as the guidelines suggested.  I still had counts around 700 and a vl that wasn't high.  Yes, I know most now say any vl is not good.  It was really the last half of 2013 that my labs began to be different.  Well, the CD4 was no longer around 700.  My vl was not going up from the 20k range. 

Last fall was the first time I had more than a sore throat, since my dx.  That is when I got a mild case of bacterial pneumonia.  That is when I began to see things were changing and meds would be in my near future.  So, while I appreciate your point of view, you do come off like I've been below 500 for years and like I'm down to 200 and I've been putting off meds all the while.  I was considered to be doing very well not on meds until the last part of 2013.  Even then, I was still near 600.  My percentage was hanging out around 21%, but this site says a percentage of 21% or higher is still considered to be a fairly functioning immune system.  My point is I don't want folks who will read this to think I've been negligent.  I've been in care and have gone by the guidelines.  Well, until they were recently changed for meds for all. 

I think I've made a lot of progress, since I first posted this thread.  I have gone from trying to justify I'm still over 500 to meeting to discuss other regimens to an appt with my therapist about being at the point where it is time to start meds-- 2 weeks time or less?  Any hemming and hawing began after I got my latest labs and started this thread.  I don't think that's too bad.  I could have not picked up those labs.  I didn't have an appt.  I could have waited to get them to prolong a decision.  I could have avoided discussing it here, so I wouldn't hear things I didn't want to hear.  I am now at 500, where I said I would start, if I hadn't already.  I am moving toward fulfilling that promise, before I do get sick.  I apologize for the length, but I already had a fairly new person message me believing that I've been in really bad shape and refusing to start meds. 


Offline Hellraiser

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Re: Is This Really A Wash?
« Reply #31 on: May 21, 2014, 02:32:45 AM »
Come on Teddy, it's time.

Offline leatherman

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Re: Is This Really A Wash?
« Reply #32 on: May 21, 2014, 08:46:47 AM »
That alone was another anxiety wondering whether I can count on my doc, when I started meds.
don't project your fears onto your doctor. ;) He routinely prescribes for people to start taking meds and probably doesn't think twice about it afterwards. Most patients just do what their doctors tell them.

A follow up for toxicity?? There is no such thing. Now if you are deadly ill, or have a horrible rash, or some other complaint, you call the doctor and he'll see you or make a suggestion as to what you should do. As I tell all those other newbies, look at the package insert - fewer than 2% of patients have those kinds of negative side effects. Most people simply have a declining viral load and get healthier. That's why your doctor didn't give your prescription or you a second thought. After starting meds, you next appointment for lab work probably won't be for several weeks - or even several months! You're pretty healthy and unless you complain about adverse side effects, your doc isn't going to be worried and isn't going to want to see you very soon. Doctors simply don't have the time to micro-monitor the 98% of patients who have no issues. When he next sees you, he's going to want enough time to go by for the meds to have done something and produced a noticeable result.

but I already had a fairly new person message me believing that I've been in really bad shape and refusing to start meds.
see? even newbies know it's time to have started
btw, you've already wasted 2 weeks dicking around with this thread. ;)

I hate to pile on Teddy; but really now, what is the debate? surely you have spent years (4 years, 6 months, 21 days as a member here) realizing that one day you would have to start meds. You're a smart guy, although you also come off as sort of a medically paranoid guy too (there's nothing much wrong with that. My mom is medically paranoid AND a hypochondriac! sheesh! I don't tell her any of my HIV/AIDS issues because she's sure to have those problems the next day LOL) so I don't understand why you haven't run to the pharmacy to get that prescription filled; but it is your choice. Of course every day you put off the meds and HIV grows and get stronger in you - well, that's your choice too.  ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline mitch777

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Re: Is This Really A Wash?
« Reply #33 on: May 21, 2014, 02:49:34 PM »
Hey Ted,

Somehow this whole thread slipped by me until today. Sounds to me like you have made the decision and are just getting yourself ready to take the plunge.

Would another week or two make much difference? No. Just hope for your sake that you dive in soon as I would think your anxiety will dissipate soon after the first pill has been swallowed.

I think I know you well enough that you will make this happen soon.

Mark
32 years hiv+ (oct. 2013) with a curtsy.

Offline buginme2

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Re: Is This Really A Wash?
« Reply #34 on: May 21, 2014, 02:56:51 PM »
Sorry.  I just felt like we have been having this conversation for awhile thats why I said you were hemming and hawing. 

Now that the decision has been made.  What is your timeline?
Don't be fancy, just get dancey

Offline zach

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Re: Is This Really A Wash?
« Reply #35 on: May 22, 2014, 12:40:18 AM »
teds a chicken shit!!!  scared of that little pill aren't ya?  :o

i say we give him another week, then force administer rectally

Offline tednlou2

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Re: Is This Really A Wash?
« Reply #36 on: May 22, 2014, 12:54:53 AM »
teds a chicken shit!!!  scared of that little pill aren't ya?  :o

i say we give him another week, then force administer rectally

Ok, but ya got to promise to get it up there good.  And, it's okay to choke me a little bit, too. 

Offline buginme2

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Re: Is This Really A Wash?
« Reply #37 on: May 22, 2014, 02:11:39 PM »
Ok, but ya got to promise to get it up there good.  And, it's okay to choke me a little bit, too.

Oh Myyyy

http://youtu.be/6nSKkwzwdW4
Don't be fancy, just get dancey

Offline mecch

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Re: Is This Really A Wash?
« Reply #38 on: May 22, 2014, 04:33:53 PM »
Well, have you got the treatment yet?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline AusShep

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Re: Is This Really A Wash?
« Reply #39 on: May 27, 2014, 10:33:08 AM »
I saw in another thread that you haven't filled your Rx yet. 

How about filling it now, so you can build up a contingency supply and get one step closer?  Maybe staring at the bottle next to your sink will help you get ready.

I've told other guys to hold on to that first bottle until it's time to refill, then refill and start popping pills (rotate your supply) and you've built up a month contingency without it taking a year at 2-3 days early per refill.

Offline zach

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Re: Is This Really A Wash?
« Reply #40 on: May 31, 2014, 05:45:41 PM »
the deafening silence of ted not telling us about his lack of commitment to go to battle with the virus currently gnawing away at the edges of an immune system that seems ok now, until its not anymore... man, i'm telling you, you don't want to do what i did the last couple years

put your boots on, man up brother
 ;)
« Last Edit: May 31, 2014, 05:49:40 PM by zach »

Offline bocker3

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Re: Is This Really A Wash?
« Reply #41 on: May 31, 2014, 06:34:49 PM »
Yes Ted -- enquiring minds want to know.....

we care about you!

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline bocker3

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Re: Is This Really A Wash?
« Reply #42 on: June 18, 2014, 07:45:07 AM »
Ted...

What's going on?  Your silence is deafening..............

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Kardean

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Re: Is This Really A Wash?
« Reply #43 on: June 18, 2014, 10:41:08 PM »
Not telling can often be telling ::)

Offline tednlou2

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Re: Is This Really A Wash?
« Reply #44 on: June 19, 2014, 12:45:14 AM »
I have a start date coming soon.  Made a plan to start once Brian is out for the summer.  For those who don't know, he is a teacher.  Just been coming to terms with all of it. 

Offline zach

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Re: Is This Really A Wash?
« Reply #45 on: June 19, 2014, 04:12:12 AM »
^+1 plans are good, you'll be fine, how is the coming to terms going?

pills, its whats for dinner, mmm mmm good

Offline mecch

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Re: Is This Really A Wash?
« Reply #46 on: June 19, 2014, 04:18:51 AM »
Are the drugs in your house yet?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline bocker3

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Re: Is This Really A Wash?
« Reply #47 on: June 19, 2014, 07:51:18 AM »
Well -- it's progress, albeit with a procrastination bent to it.......  do you have an actual date??  When is Brian done for the summer (and why did I think he was a fireman??)??
Let's see an actual start date and if you move it, well.....  we may have to have a small, adhoc "AMG" in Louisville to help encourage you along.....  Sort of like a Tony Soprano visit!!   ;)
Keep telling yourself -- swallowing that pill is completely about taking control of your body from this virus.  Once you start, you have regained control, you have not given it up.

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline tednlou2

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Re: Is This Really A Wash?
« Reply #48 on: June 28, 2014, 01:25:45 AM »
The Stribild is in house.  Picking it up seemed so unreal.  Brian said to just look at it like I was picking up blood pressure meds.  Btw, Brian is a teacher, and is a volunteer firefighter.  He's actually a lieutenant now.  He is also the trainer for the new recruits. 

So, I am looking at the meds every day now.  I plan to start here in the next week or two.  Well, sometime within the next couple weeks.  That could be tomorrow.  We will see.  Brian would like to go somewhere this summer.  I would want to be on meds for a while, before heading off on a trip.  That may just require a week, to know whether I'm going to have the Hershey squirts and nausea. 





Offline life2

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Re: Is This Really A Wash?
« Reply #49 on: June 28, 2014, 01:38:17 AM »
Hi Ted,

I didn't have a choice of when to start meds but I certainly had a lot of anxiety about it when I was waiting on the genotype test.

For me the anxiety I had over side effects was far worse than the actual side effects.   

 


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