OY - Tweaking my meds - AGAIN !!!

[Jody]

I am somewhat depressed today as I visited my doctor on one of New York's coldest nights last evening and he is changing my meds again, at least one of them and the dosage on a second.

In summary I had been on Viramune, Truvada and Videx EC for quite a while until the last week or so of January when we determined that the Videx was too toxic for me...So we switched to Reyataz and Norvir (as a booster) and kept the Truvada. He seemed hopeful it would be an improvement...It was an easy to take regimen and while easy was not my only criterion of course it was still much better.

But my numbers after 5 weeks and a vist to the labs were the worst in over 2 years.  This past December my VL was under 40 copies, CD4 = 234 and pct was 16%...Yesterday they were VL of 79, CD4 = 209 and pct dropped to 12%...So he felt that a detectable VL was inexcusable in the current state of affairs so to speak, the ratio dropped too much and I had a drug interaction between the Viread that makes up part of Truvada and the Reyataz. 

So now I will remain on Truvada, double the dosage of Norvir and swap Reyataz for a new drug he seems to love the potential for- Prezista...I will take 2 Prezista, and 1 Norvir after breakfast and the same thing after dinner plus 1 Truvada...A total of 7 pills a day, up from the 3 that I was taking.

So I did ask why with a still pretty good viral load I was switching so quickly but he insisted the regimen that included Reyataz worked for many but really wasn't for me which is why he had me test at the lab after just 5 weeks or so on it...He seems excited but I felt very down as I asked if I would soon run out of options...He assured me I would not but I almost wish my VL was high enough to do accurate genotype and phenotype testing. 

So today I am concerned and more worried than I have been in some time...I had almost grown a bit smug I suppose but that smugness, though not an outward emotion has been wiped off my face !!!  I have had a good relationship with him for almost 12 years now and he goes to all of the HIV conferences including the recent one in Los Angeles and he says many good new drugs are coming down the pike.

Wish me luck if you will and thanks for any input anyone may have.

Jody     

[RAB]

Oh Jody  I am so sorry to hear this.

In the big picture of VL of 79 seems so harmless to me, but I know little about the pharmacology of how these drugs interact with one another so will defer to your doctor's decision to move quickly.

I understand completely your wish that you could have the resistance test.  You're in that area where there may be indication of an inadequate regimen yet unable to determine exactly what is going on.  Although in this case I doubt resistance is the issue as much as regimen choice.  In fact, making the change he's recommending is probably to protect you from developing a more complicated resistance profile and preserving future treatment options.  But again, that's just based upon my limited knowledge.

The fact that your doctor took a proactive position in testing you 5 weeks out from starting the new regimen seems to indicate that his clinical experience has told him the Truvada, Reyataz + Norvir regimen was potentially going to be inadequate based upon his knowledge of your clinical history.  But still.  Jeeez Louise!

About this comment:

He seems excited but I felt very down as I asked if I would soon run out of options...He assured me I would not

You are a smart man who has lived with this wretched virus for a very long time.  If you've had a good relationship with this doctor for 12 years, then maybe the best thing to do is follow his recommendation and see what happens.

RAB

[mjmel]

Trust your doctor, Jody. After 12 years he's not going to start bullshiting you at this point. Of course you're concerned and worried and bummed out. Am sorry to hear you going through a low period. As Delores Claiborne says, "It's just a bad patch, dear."

Do you want to hear about the side effects of Norvir? Have been on that stuff for 7 years. There use to be a liquid version. OH MY GOD! makes me want to barf just thinking of the taste. Truly wicked. Do not let the gel capules lay around in temperatures warmer than 70 degrees. They will start to sweat and you'll get a taste of 'em. Do not let the pharmacist pack them too tight in their container as they will split in the fridge when they expand (slightly), then you'll taste 'em. Keep in fridge during hot weather seasons. Be well advised!

[allopathicholistic]

Wish me luck if you will   

You got it Jody 

he says many good new drugs are coming down the pike.

Yup, which also means "We gotta hang in there, to find out!" 

Best wishes for health,
Alex

[AlanBama]

Jody,

I understand the trauma it causes to change meds, but I agree with the others, I'd trust your doctor with this one.

I feel fortunate that Truvada and Viramune are the ONLY ones I have to take!

Let us know how you're doing with the new combo...

hugs,
Alan

[risred1]

Its unfortunate you can't do a resistence test, as that probably would have helped select a treatment.

I'm not an expert, but there is a reatazz option that doesn't use norvir, and that is the reatazz epzicom option.

since you are not getting the results you and your doc wants, I'm sure looking for that new combo may take some time.

this is what my specialist is telling me, and I'm close, but not on meds yet.

His preference is to start with a PI based treament, then the Sustiva Based Treatment, and the 3rd combo is a different PI treatment.

Being that Kaletra was showing so well last year, that was his initial recommendation.

but there has been a reworking on "preferred" treatment, so that Reatazz is in the same class as Kaletra. If you look at the recommended choices you can see there are two reatazz combos, Reatazz boosted with Norvir and (truvada or sustiva) - you need Norvir to boost the Reatazz due to the suppression of reatazz due to Truvada or Sustiva tendancy to supress this PI in the blood, OR, Reatazz and (Epzicom or Epivir).

So, depending if the need to change med programs is in play, you may want to reasearch the recommended combos, so that you can choose your path.

[Matty the Damned]

I'm thinking of you Jodala.



Mattala

[jjmcm]

Hello Jody.

I was on Reyataz, Norvir, and Viread, and Emtriva prior to my current regimen.  When it failed, my VL shot up to 700,000.  However, the Viread still showed effective after resistance testing.  But, I was not willing to continue using it since it obviously was doing little.  My doctor said he sees that quite often with Viread.

Since you have been on Truvada for a while, I would certainly not just add the Prezista in.  I know several people that are already resistant to Prezista by doing just that.   I would consider adding another class like the Merck Integrase, TMC-125, or even Fuzeon if you can stand the injections.

Have you already done Kaletra?

--JJ

[Jody]

Thanks everyone for your concern.

JJ - You mention some interesting points...If the Truvada is no longer working for me than it would indeed be best to come off that...Surely I feel my doctor must have considered that possibiltity but I feel like a guinea pig (welcome to the club I guess) as he is making switches right and left it would seem...I would rather just remain on whatever I am on and let my VL go over the amount where a genotype and phenotype test would at least shed some light here.  Now I am concerned that in 5 weeks or more he will find a reason to switch off the Prezista and I would potentially lose that and the Reyataz I am now coming off of...Regarding Fuzeon that would be very difficult for me as I work full time and it would be a huge inconvenience to do that injection...I think I would take an early retirement and let the chips fall where they may if that were my only option.  It's on my mind to do so anyway as my network helpdesk job which includes phone calls and e-mails from many irate people and much more volume than I even thought possible is becoming extremely stessful...I have alot of vacation time and I already left a voice mail message that I would not be able to make it tomorrow and I will take an ambien to get to sleep tonight.

Jody 

[jjmcm]

Jody, when you reach a certain point with HIV, you have to become a part of the process in selecting your regimen change.  Too many times doctors do what is an easy sell to their patients.  Personally, while your results were not really that bad before this last change, I would have insisted on adding another class to the mix before just swapping out Prezista for Reyataz.  Because if you have been on Truvada for a while, this may almost be likely doing a sequential monotherapy.

While I am no doctor and haven't seen any of your resistance profiles, I do think that you would have a better chance of increasing your CD4's with another class of medication in the mix.  However, you might not know for several months that you are actually burning up one of the best and newest PI's available.  The results for folks with Prezista and Fuzeon have been wonderful.  It is likely to be the same when you combine Prezista with the new integrase inhibitors.  At a minimum, I would be doing the TMC-125 EA with it.  You have to bring these things up with some doctors.  Remember, this is your body and life, not his or hers.

You never mentioned whether you have taken Kaletra previously??

Take care,

--JJ

[Jody]

JJ - No I have never been on Fuzeon, Kaletra, Integrase or TMC 125 but I was set to begin the Prezista tomorrow (Tuesday) and I am of course quite concerned...I left a voice mail for my doctor today which might be a bit rambling so perhaps I will try again tommorow and just wait to switch on Wednedsday.

Thanks again, Jody

[jjmcm]

Jody, while Kaletra might have it's share of side effects, it is very effective in most cases.  Personally, I would ask your doctor why he would jump immediately from Reyataz to Prezista.  Yes, Prezista is newer, but why not use something like Kaletra which would probably make your CD4's jump way up and save Prezista for down the road.

Since I have always been forced to limit my regimen changes because of available meds, I like to save everything I can for the future.  If your doctor insists on Prezista, ask him why he would not want to add another class like the TMC-125 expanded access which is from the same company as Prezista, Tibotec. 

My doctor wanted to put me on Prezista when it was still in the trials as TMC-114.  While that may have been OK, I decided to use Kaletra with Invirase and Fuzeon. (and a nuke) The results have been very good and I have saved Prezista for my next regimen.

Just my two cents,

--JJ

[Jody]

For better or for worse I am now on Prezista, Norvir and Truvada and since my last labs my counts have improved...My t-cells are up to 227, my VL is under 50 and my pct jumped to 15% and my ratio to 0.37%.

Still truckin' along, thanks for your support here.

Jody 

[Miss Philicia]

I'm on exactly the same thing, with the addition of Fuzeon.  I've been on this combo for one year with phenomenal results.  Just curious, but did your doctor suggest Fuzeon at all?  I was initially part of a study of the Fuzeon with Prezista and I know supposedly the synergy of the two together give you MUCH better results than just the Prezista alone.

[Jody]

Philly...No he did not suggest Fuzeon and besides I wouldn't be anxious to give myself needles each day, I mean I like pricks but not those kind !!! 

Jody 

[Miss Philicia]

Oh... I scrolled up and read everything and see I was your 2nd Fuzeon pusher

Seriously, speaking from experience it seems much more scary than it is.  I was mortified when it was first suggested.  I just find it odd your doctor didn't even suggest it.  It's a very au courant combo right now if you're treatment experienced.  I read where your concern was doing it because you work full time, and though I'm not working right now so you can feel free to read me not knowing what it would be like, you space the injections by 12 hours.  I guess if you were working over 50 hours/week it would be hard.  Normal 40 hour work week would be quite doable.

I'm sure it would get your cd4's up much, much higher.  Mine increased by almost double the total I began on, and it did this rather quickly.  My % up 10 points.  And of course the vl is undetectable.  I've just never seen a regiment like it. 

Sorry to sound like a salesperson.  Anyway, hope your switch works well for you.