Detectable VL despite change of HAART (on it for the last 14yrs) - Please Help.

[Clara zetkin]

Hello,

ok – first let me say that I have been following this blog for many years (I would at least 9). Never have I written before but “know” many of you (especially long-term survivors). I always come here when I have doubts but also sometimes just to check how everyone is doing.
 
About myself: I am a “friend” of and live with a person with HIV (he also has HCV) who has had both of these conditions for many years now. He is 45+ and has had the conditions since when he was about 25. We live together. I love him.

Regarding my "friend"'s HIV condition, he has been on the same medications for 14 years: viramune + Kivexa (abacavir and lamiduvine). He was on treatment for a year before this but then stopped for another year (treatment interruption). The one year's combination included combivir, I think, and prior to that he had to stop a treatment because of anemia (o maybe it was the combivir that he had to stop as I know AZT can cause anemia...). In his 14 years treatment, he never had a problem (well, sort of – see P.S.); good CD4 and undetectable VL. His last CD4 (6 months ago) was 1200 31%. However, a test about 2 months ago showed a VL of 200 & something. The test was repeated to see if it was a blip (he had one other blip 6 to 12 months ago of about 400...) but it came back positive again: VL at 70. The doctor changed his viramune straightaway, as she said viramune can develop resistance quickly, and replaced it with Duranuvir and Indinivar.
Now, on repeating the VL a month later, it was still detectable at 490. (All other results, except the Gamma, were within normal limit. CD4 will be retaken at next visit...Rationale for not taking CD4: Doctor said she was not concerned with it being stable for a very long time). About the VL, she was puzzled as were we  .
He is 99.9%, if not 100%, adherent; always has been and I had previously read these new drugs were quite good... So was/were very hopeful...
But maybe it would have been better to change all medications instead of the viramune only? Doctor suggested to repeat the test in about a month and taking it from there. She justified it by saying that we might end up chasing numbers otherwise and was more relax in terms of these new drug's resistance profile... I think this is wise.

But what do you guys and girls think? Do you have any suggestions? Any things that you would do or ask at the next visit? Note that he was under a very stressful period copying with losses in the family ; although the doctor said this should not have had an impact...

Ah, one more thing, she did run a resistance test but it come out negative; no resistance was found (but maybe there was just too little virus in the blood(?))

Sorry for the long message and thank you very much to you all in advance for your advice.

Clara Zetkin (not my real name...but a good one nevertheless, me think!)

*[[Well, no problem apart from high cholesterol (which he was able to manage with statins first and then by stopping smoking and eating better...still on the high side but not v. concerning) and a quite high Gamma GT. This is worrying. But he has had this high value for a very long time (at least 10 years. It was lower for a few years but now ranges between 500 and 600). He never had a liver biopsy – he does not want to do one... [I know...it’s hard sometimes but I have learnt to accept we all have different outlooks things...]) – but has had a fibro scan a couple of years ago which showed no fibrosis. He is due for another one in 2 months. All other tests within normal limits]].

[Clara zetkin]

Hello,

me again. I know this is a tricky question... but anyone willing to put his/her own two cents in?

What would you do?

Thank you.

P.S. ah one more thing, when I said problems I, of course, meant blood test reading pr not physical ones...

[Jeff G]

Hi Clara and welcome to the forum , Im sure somebody will come along and answer your question for you . I wish I could be of more help but this area of expertize is handled much better by a few other members who hasn't seen your post yet .

Im sure they will notice and give you the answers you seek soon .

[Clara zetkin]

No problem. Thank you for the welcome and for replying to me Jeff.

I will wait patiently for someone to chime in...

[Clara zetkin]

Hi all,

me again...I know...and will not post anymore for at least a few weeks.. .... But we really value your comments and would very much appreciate your suggestions before our next meeting with the HIV consultant (in about 4 weeks time).

Anyone willing to "advise" us?

Newt? (I am asking you because you seem to have really great knowledge about these type of things. But of course we appreciate comments from anyone!! .

Thank you and a virtual hug.

 

[jkinatl2]

Well as I see it, there are a ton of other medication options available to the person. Is there a reason he can't just switch to a new combo?

I have loads of friends who are long term survivors, and many of them stay on antiquated combinations until things get dicey - from lipo to crazy lipid levels and other stuff. I don't know where you are, but is there a reason why a new combination can't be tried?

Sorry, I am not Newt, but I have been on a bunch of drugs for HIV and though my current combo is doing great things for my viral load, it's not nearly as nice for my lipids and blood pressure as I would prefer. At the end of the year, some new drugs will be out and perhaps available through Medicare, and I find myself in the position to be researching new combos to deal with these issues.

[Clara zetkin]

Thank you for your reply Jkinatl2! Really appreciated.
 
I know there are other medications out there and to tell you the truth I am not sure why the doc did not change his combination on the last visit...Maybe she did not want to make a new change to his regime too quickly also because of the things he is dealing at the moment - (loss of his mother and other losses in the family...). But if his viral load continues to raise, I think there is no really other options. And maybe it's just worth changing even if it remains the same...! I tend to think that this will be the right thing to do. I am just unsure about cross-resistance and what his options are. I suppose we have to trust the doctor on this one.

It's (always) good to know new drugs are coming out and hope that once this happens you find a combo that works for you and that does not cause you too many side effects.

Thank you again and take care.

[newt]

Hello

I am unclear in my mind why exactly your doc changed the combination in the first place. A viral load of around 400 followed by 70 is not a rising viral load.

Up to 50% of blips are down to lab errors. Find out if there are new machines at the lab, or new people doing the tests. Ask the doc if many others have had a similar experience.

Daranuvir and Indinivar is not a useful combination. Indinavir is an old drug no lon ger used, really. Darunavir is given with a small dose of Norvir as a booster, which makes the darunavir last in the body a long time. I am hoping you really meant Norvir not Indinavir...

How the gut absorbs drugs can affect drug levels, so any GI problems need sorting.

The doc can measure drug levels with a test call TDM (therapeutic drug monitoring) and if necessary up the dose of the darunavir (or change meds if none at all is measured, occasionally people's bodies just won't accept a particular drug).

Food is important with darunavir too, you mus take the meds with some.

Using darunavir 600mg 2 x day rather than 800 mg 1 x day dose is probably a good idea.

Swapping the Kivexa for Truvada might help. It would be common to consider making this swap.

Adding Isentress (raltegravir) might help too (will help rather than might, I would bet).

I am inclined to believe the resistance test results. A viral load around 500 is enough virus for an informative test.

Since resistance emerges slowly on darunavir you have time to check this out. Many months.

There is a phenomenon where people with suppressed virus get a series of blips and then everything settles down. Something of a mystery. It doesn't seem to affect long-term outcomes or generate resistance.

Hope this helps

- matt

[Clara zetkin]

Matt, this is very helpful! I cannot thank you enough.

About the change, I think the doctor was concerned about Viramune as she mentioned that resistance to it can develop quickly and she said “considering that he stayed quite a long time on that regime"...I think she thought this was a prudent strategy.

Anyway, I’ll certainly ask her to do a TDM test if the viral load is still detectable at the next visit, as well as mentioning the possibility of using Daranuvir 2 x day and of swapping Kivexa for Truvada!

I also ask about the possibility of adding Isentress.

(He does take Daranuvir with food but perhaps not as strictly as he should (sometimes after half an hour)...GI problems, yes...but not that much. However, I suppose we are all different and the problems he is having might be enough for him...the TDM test should tell us that).

The doc mentioned that she was seeing an increase in blips lately and that the people at the lab test wanted to count viral load under 20 (where undetectable = <20) but they refused. But she did not say anything about new machines or people. I’ll ask this too.

We’ll let you (all) know how things progress.
Thanks all and take care,

Clara

P.S. yes Norvir not Indinavir (not sure where I got that from... ).

[newt]

to count viral load under 20

hmmmm....

Strictly speaking 20 or under is undetectable.

UK uses under 50. There is good reason, since there is evidence that under 50 on viral load indicates the virus is fully supressed and doing nothing. So, in which case, what is the point of counting lower?

One of the tests that measures down to 20 is flaky and when it was used in the UK docs were counting 200 or less as undetectable, and seeing lots of blips in the low hundreds...

The manufacturers have corrected the error, but there's nowt to say labs didn't buy/aren't still using an older version.

If the doc is seeing lots of blips in patients with a long record of being stable with suppressed virus, I, personally, would suspect the lab, especially if adherence has been, as you indicate, nigh on perfect.

- matt

[Clara zetkin]

Yes, here at this hospital (UK based) they use the under 50 mark.

I suppose we'll have to ask her again about the alleged increase in blips to make sure we understood it correctly. It could have been just a reassuring thing on her part (i.e., there are others in your situation; don't worry).

Anyhow, this is interesting and, as always, v. useful.

Muchas gracias!