Resistant to the Complera I've been diligently taking for 3+ years...

[Navlysa]

So today my doctor informs me that I'm resistant to two of the drugs in Complera and I must have been all along... Yet my counts were always perfect... So for 3+ years I've been taking a pill that's only served to make me tired, forgetful, anxious and whatever other nasty side effects it's had and my own immune system has been keeping the virus in check...

Now Doctor wants me on a new cocktail, but I'm wondering if I should just stay off the meds for a bit... I mean if they weren't working anyway I've been undetectable for at least 6 years...

Also wondering if that's a malpractice suit since they didn't bother to check me for resistance prior to taking me off my previous cocktail...

"The Practice of Medicine"... That really about sums it up... They really don't have a clue at times... They just keep practicing on us...

[Jim Allen]

Hi

So 2 out of 3 that sucks, sorry to hear that.

My own thoughts are if they did not test beforehand that can happen but shame they did not follow-up sooner, not sure how you would know as fact that the resistance was from the start however as it could happen at any stage just less likely with adherence. What i mean is it is true that near perfect or perfect adherence, maximizes the likelihood of long-term success but it does not guarantee it.

Now since your asking I would say switch your meds, undetectable is not the full story, so treat your HIV and move on with your life and be happy.

Nobody is going to give you legal advice or tell you to sue or not here.

Jim

Slightly older but a good read.
http://hivinsite.ucsf.edu/InSite?page=kb-03-02-09

[CaveyUK]

Can I ask something... If you have been consistently UD, then what prompted the Doctor to run resistance tests now?

If you are resistant to 2 of the drugs in Complera, then you are susceptible still to one of them. So I wouldn't simply assume that your immune system is taking care of things, as you are still taking one effective drug.

So absolutely stay on meds.

As you talk about having to put up with side effects with the current regimen, a switch would probably be sensible anyway. Assuming you don't have integrase resistance, some of the newer drugs in that class are very effective and most experience no side effects.

[Navlysa]

My doctor decided to run the test because I kept complaining of the side effects getting worse... She was in shock when she got results, the I was resistant to the two most important components of Complera... She said it was doing absolutely nothing for me... When I asked her how that happened and if I'd been tested prior to being put on Complera she couldn't find anything stating I had... When I told her which doctor changed my regime 3 years ago she literally rolled her eyes... Apparently he has a reputation for being a bit "willy-nilly with drug dispensing...

[wolfter]

Are you currently undetectable?

[Navlysa]

Yes I've been undetectable for 6 years or more... My counts are generally better than the average "healthy" person... I've always had an insanely good immune system prior to getting HIV and I suspect that's why even without medication my numbers stayed in a healthy place... She only tested me because she was hoping a change in regime would improve my quality of life... At 46 years old feeling like an 80 year old with Alzheimer's is not an especially good quality of life...

[wolfter]

Yes I've been undetectable for 6 years or more... My counts are generally better than the average "healthy" person... I've always had an insanely good immune system prior to getting HIV and I suspect that's why even without medication my numbers stayed in a healthy place... She only tested me because she was hoping a change in regime would improve my quality of life... At 46 years old feeling like an 80 year old with Alzheimer's is not an especially good quality of life...

They can't perform a genotype testing on someone who is undetectable.  Are you possibly confused by what you were told?

[Navlysa]

They can and did preform the test, she showed me the results... She was wanting to change my regime so she needed to know what I was resistant to... When I first accepted i had HIV 20+ years ago I damn near died because they couldn't find a regime that would work, so I ended up becoming resistant to most of what was available at the time relatively quickly... So yes, a test was needed and preformed in order to determine what new drugs would work on me... My doctor was in shock when she got the results...

Or maybe you're right and she's incompetent and didn't realize testing an undetectable patient would yield faulty results... Perhaps I'm not resistant to anything at all... Surely that can't be the case...

[Navlysa]

I actually acquired HIV and tested positive 4 years before I accepted it... A bout with thrush forced me to acknowledge I had an issue that needed resolution... By the time they started working with me I was very sick, so sick the doctors questioned how I was still upright... The multitude of medications they threw at me took what little fight I had left in me and I ended up with full blown AIDS and a resistance to at least 5 different drugs... It was hellish and it took me nearly a decade to recover completely... When I did recover I always had excellent results on all my tests... I've stayed relatively healthy other than side effects from the different medications I've taken since my recovery... The side effects of medications are worse for me apparently than the disease itself...

[Jim Allen]

The side effects of medications are worse for me apparently than the disease itself...

Look now its time for newer meds and to move forward. You said you were very sick when you started initial treatment and now your not, so I would call it an improvement. With the next meds you should expect no side effects.

Question what medication has she recommended as replacement for you current ones?

[CaveyUK]

I actually acquired HIV and tested positive 4 years before I accepted it... A bout with thrush forced me to acknowledge I had an issue that needed resolution... By the time they started working with me I was very sick, so sick the doctors questioned how I was still upright... The multitude of medications they threw at me took what little fight I had left in me and I ended up with full blown AIDS and a resistance to at least 5 different drugs... It was hellish and it took me nearly a decade to recover completely... When I did recover I always had excellent results on all my tests... I've stayed relatively healthy other than side effects from the different medications I've taken since my recovery... The side effects of medications are worse for me apparently than the disease itself...

I think all of that shows that your immune system is clearly not good enough to control HIV without meds, and therefore the drugs you were taking must have been working to be able to suppress the virus to undetectable levels, even if it was only one component.

[Navlysa]

New meds which I'll start this evening... Unfortunately insomnia has always been an issue for me, so that worries me a little... Otherwise I'm prepared for a bit of suffering through the adjustment to new meds...

Descovy (emtricitabine + tenofovir alafenamide ) (1 tab)

Tivicay (dolutegravir) (1 tab)

[Wade]

They can't perform a genotype testing on someone who is undetectable.  Are you possibly confused by what you were told?

This is my understanding also, so this makes no sense to me, but no matter good luck with your new treatment.

Best, Wade

[Navlysa]

http://www.projectinform.org/hiv-news/new-hiv-genotype-test-can-find-drug-resistance-even-at-undetectable-viral-loads/

Maybe she used the latest version of this type test... I don't know... What I do know is, I was tested and she did show me results... Could the test be wrong, or flawed? Possibly... But I'd like to think they wouldn't worry me with inaccurate information but rather take the test a second time compare results...

[CaveyUK]

It could be all sorts of things. Look, whatever 'test' was run - it was taken because you were experiencing side effects so a switch in meds is appropriate anyway.

I was more worried about you suggesting stopping all meds, when history shows that the meds work(ed) and I was keen that you didn't have some false sense of security based on the belief that the meds you were taking were not working, as they clearly were - even if only partially.

But you are on a new regimen now, so no worries in that regard

As for your new combo - I think it's a great choice. Many consider it the preferred choice and whilst some people do experience trouble sleeping or anxiety this is still a very very small number, so you have no reason to believe it will affect you in this way. Moving from an NNRTI (contained in Complera) is good if you had a lot of CNS side effects, as these shouldn't be the case with the new drugs.

My bet is that you will take these and feel a whole lot better about everything.

[Jim Allen]

New meds which I'll start this evening... Unfortunately insomnia has always been an issue for me, so that worries me a little... Otherwise I'm prepared for a bit of suffering through the adjustment to new meds...

Descovy (emtricitabine + tenofovir alafenamide ) (1 tab)

Tivicay (dolutegravir) (1 tab)

Cool, sounds like you are on track to continued treatment of your HIV and moving forward with newer meds.

Jim

[mecch]

So today my doctor informs me that I'm resistant to two of the drugs in Complera and I must have been all along... Yet my counts were always perfect... So for 3+ years I've been taking a pill that's only served to make me tired, forgetful, anxious and whatever other nasty side effects it's had and my own immune system has been keeping the virus in check...

Let's unpack this and ask a few questions.

You are claiming to have a perfect genetic immune response to HIV and your treatment did nothing. You are saying you were undetectable for years, and this has nothing to do with your treatment. 

Well, did you have VL counts when you were diagnosed?  Someone doesn't go from a untreated VL count, to undetectable, naturally, without medication, except maybe just after the infection when the body of the LTNP pushes it down and stays down.

Isn't it possible the 1-drug that is effective (if your story is true) is also the effective treatment that put you at undetectable for years?

Now Doctor wants me on a new cocktail, but I'm wondering if I should just stay off the meds for a bit... I mean if they weren't working anyway I've been undetectable for at least 6 years...

Are you looking for a way not to be treated?  Seems like it.  So if you are a LTNP - long-term non-progresser, I think you can ask your doctor to figure this out in a controlled way - by not taking the drugs and seeing what happens.

In most developed Western countries - this is NOT the recommended protocol. The newest protocol is everyone is best on treatment. 

Also wondering if that's a malpractice suit since they didn't bother to check me for resistance prior to taking me off my previous cocktail...

But you were not harmed by the mistake. You claim the drugs didn't work BUT ALSO you were undetectable all along.

Of course I would be very angry to discover such bad medicine, if that is what you have experienced.  But it might be hard to prove damage so not sure its worth the pain and expense of malpractice.

Finally, most importantly (for me):

Regarding my first quotation of you, at the top of this post - you claim that HART - HIV treatment - is somehow TOXIC:   

"So for 3+ years I've been taking a pill that's only served to make me tired, forgetful, anxious and whatever other nasty side effects it's had"

This is the wrong message to be posting in this forum and I think you deserve some pushback on this thread which is utterly confusing and seems to be filled with holes and unchallenged, outrageous claims.

[Navlysa]

@mecch

Since I've been poz for over 20 years and only took Complera for 3 of those years started after other drugs helped me get my VL in check, it isn't impossible to think I just managed to stay undetectable for 3 years on a drug that wasn't working for me... After all, I lived just fine for 4 years after being diagnosed with a detectable VL... So I'm not sure where your holes are, but I do know my own history well enough to say with some confidence that although Complera wasn't working for me I did manage to stay healthy asside from the side effects... Lots of people stay healthy off medication, it isn't unheard of...

And yes Complera is relatively toxic compared to newer drugs which is why my doctor wanted to switch me prompting the test...

Having lived with HIV and multiple drug cocktails for over 20 years I'm quite familiar with some insanely nasty side effects... Especially considering that when I, as a 100lb woman, was introduced to treatment, most were only ever effectively tested on 200lb men... So slot of drugs were too powerful and those made for children weren't powerful enough... I've had hives, swole up to 150lbs of water wait, went completely crazy and a plethora of other hideous attempts prior to finding a drug that actually worked... And even then I ended up taking it differently than most people...

So don't presume I'm just stirring a pot, I came here because I had a legitimate question and years of horror stories to leave me leery of change...

Either help or bugger off... Honestly!

As for being harmed or not, living like an 80 yr old Alzheimer's patients from 43-46 isn't exactly what I'd call a good quality of life...but perhaps i was expecting too much!!!

[mecch]

You blamed Complera for those side effects.  That was clear.  I don't need to bugger off when I give you push back that isn't the message that HIV+ people need to hear. Particularly newbies, who are so worried about the myth that HIV treatment is toxic.

If you have 20 years experience, why did you put up with these side effects. You should know many of us nowadays in developed countries have options with little to no side effects.

If you have been transformed into a LTNP and want to test it out, then have the doctor OK that and keep an eye on you.  I am the only responder who took that question seriously and gave a rational response.

I am advocating for you to FIND a quality of life by digging in and getting the best care and best treatment possible.  If I didn't express that correctly I regret it.

[Jim Allen]

Hi

I am only going to warn once, like it or lump it.

Describing modern HIV treatment as Toxic. It's a sweeping statement about something that is at the end of the just a medication and with any treatment some people will experience some degree of side effects.  It does not mean anything more than that.

Look you were sick, you took meds and got better. Great, perfect.
You found out you had become resistant after telling the doctor about some side effects, this can happen at any stage and you do not know when.

Anyhow you are now switching to different medication. Great move forward with that.

Either help or bugger off... Honestly!

As for being harmed or not, living like an 80 yr old Alzheimer's patients from 43-46 isn't exactly what I'd call a good quality of life...but perhaps i was expecting too much!!!

When you post and open a thread here, keep in mind people are free to comment on your thread/post. Nobody forced anyone to comment but be grateful they are and that they are trying to support you in the best way they can.

That said if you don't like a poster you can put that Forums member on "ignore" by using the link that appears at the bottom of the user information next to their post. You can "unignore" a member by going into your profile and taking them off the ignore list. Or you can report a post to the moderator

But don't tell people to bugger off because its simple, if you can't talk or answer questions in a normal fashion you will be getting a TO.

Now you had some side effects, it was nothing like an 80 year old Alzheimer's patients. When you are pissing yourself and sitting in a pool of your own shit and drooling over the keyboard we can discuss this again, but don't compare yourself to others with different illnesses until than.

Jim

[Navlysa]

I didn't blame Complera for anything it isn't already known for... And toxicity of any and all medicine isn't mythology... It's a fact! Granted there are varying levels of toxicity, but all drugs are toxic...

I put up with Complera's side effects because they weren't as bad for me as Kaletra's side effects... 20+ years ago there wasn't much information out there to find, and today there is entirely too much... I've just done what my doctors said was best and up until now I've done it without question because I did go through so much hell initially...

I've decided to try the new cocktail and hope for a better quality of life... I do still believe my own immune system is a bit stronger than it's been given credit for, I don't think it's capable of keeping me undetectable forever but I don't doubt it's done a lot over the past 3 years... I was more worried when I initially got the news because I thought the Complera had been working in the beginning and my HIV developed a resistance in 3 years... So I was terrified that if I blazed through that in 3 what if new meds only lasted 2 and the next only lasted 1... Even with 20 more options out there a virus aggressive enough to kill the antivirus so quickly would kill me a lot sooner than I'd like it to... After my doctor said I'd likely always been resistant I was a bit pissed off having suffered through the side effects for so long for no apparent reason...

I'm sorry you can't understand that, but that's how I feel and as far as I know, that's still my right...

[Jim Allen]

I didn't blame Complera for anything it isn't already known for... And toxicity of any and all medicine isn't mythology... It's a fact! Granted there are varying levels of toxicity, but all drugs are toxic...

So is toast and jam and ham sandwiches.

Have a few days off.

Jim
 

[leatherman]

Especially considering that when I, as a 100lb woman, was introduced to treatment, most were only ever effectively tested on 200lb men... So slot of drugs were too powerful and those made for children weren't powerful enough

boy I can feel for you there! as a 130-150lb skinny guy, you don't have to tell me that we have been "overdosed". That's one of the reasons they are constantly revising HAART regimes. Can you imagine (and you should at 20+ yrs poz) when they were prescribing AZT 4- 100mg pills every 4 hours 24-hrs a day? That's 3,200mg a day! Nowadays they would never dream of prescribing that much - or really prescribing it much at all.

Quite frankly, I am one of those who has been less than 100% adherent through the years; but have remained UD with no resistance. Clearly, the full prescribed dosage (a generic dosage not based on exact weight or individual metabolism) would be overkill for me. But this is an issue of which my doc is aware and has monitored faithfully for over a decade.

too be honest though, I'm fine with the "overdose", as I have found a regimen that produces no side effects for me. (lordy! that's been a 20+ yr struggle to find a med that didn't give me a bad reaction or simply make  me vomit up each dose. I used to puke every single day, got it down to 8 times a month, then 4 times a month, and now after 24 yrs of meds, with the last change a year ago, I no longer puke at all!) I'm fine too with the "overdose" because AIDS nearly killed me a number of times and some side effects are nothing compared to dying.

I put up with Complera's side effects because they weren't as bad for me as Kaletra's side effects... 20+ years ago there wasn't much information out there to find, and today there is entirely too much... I've just done what my doctors said was best and up until now I've done it without question because I did go through so much hell initially...

I can certainly understand that too. I put up with puking every day because it was better than the anemia from AZT that was killing me. I put up with the horrible side effects of Sustiva because I had already used up everything else available. Three times in my life, I went without meds, waiting on the next thing to come to market because the effects of the meds were too terrible.

but there's no reason to stay on something that's harmful to you these days, so I'm glad to hear you're trying something new.

I've decided to try the new cocktail and hope for a better quality of life.

just a little over a year ago I changed meds to improve my quality of life and what an improvement it has been! I sure hope that your new meds do as well for you as my new ones have done for me

So I was terrified that if I blazed through that in 3 what if new meds only lasted 2 and the next only lasted 1... Even with 20 more options out there a virus aggressive enough to kill the antivirus so quickly would kill me a lot sooner than I'd like it to..

another place I can empathize. Last year just before I changed meds, I had a HUGE viral spike for no apparent reason. I worried through a genotype test that I had ruined a lot of good meds; but, lo and behold, there was no resistance. (wtf?) Like I said earlier, I've burned through a lot of HIV meds and often worry that I'll run out again (when it's actually happened several times before is it a ptsd-type worry or is it just being realistic? ?)

Best wishes with the new drugs and hopefully this problem with Complera will just be a little bump in your journey through life.

[Jeff G]

Its possible to have some resistance issues with HIV meds and remain undetectable, especially if you go onto the new med already undetectable.

I do not think its malpractice in this case, far from it … the new more sensitive genotype test was not around until very recently and since you have had HIV so long it was not common for doctors to do any type of resistance testing unless they have a good reason in the past. Since you are not a LTNP its clear to me the meds were working despite some resistance issues with a few of the meds in a combo.

You wrote … “The multitude of medications they threw at me took what little fight I had left in me and I ended up with full blown AIDS and a resistance to at least 5 different drugs.”

This sentence is what led me to make the observations I did about your resistance issues.

I realize the OP is on a break but just wanted to post for the benefit of all who may read.

[Mightysure]

I'm sorry to hear that.  That's definitely not within the protocol for post-diagnostic testing, to not do resistance testing, but there may have been a valid reason, i.e. your initial viral load was too low for test to accurately give results at that time.

I guess you'd only win a malpractice suit if you proved you were harmed and you were able to prove that the doctor's negligence was the cause of it.  It's going to be hard to prove that you weren't resistant when you were infected.

There are different levels of resistances.  You can be slightly or somewhat resistant (I know there are more medical terms than what I'm using, but you get it) and you can be completely resistant.  Do you think that may be the case since you have some resistance to at least one of the drugs in your new regimen?