Author Topic: low level hiv viremia (Read 5649 times)

Marcanthony · « **on:** March 16, 2019, 01:05:39 pm »

Hello all. I posted some time ago saying hello, but now I have an issue.

It seems that my medications are not keeping the VL undetectable, it’s hovering around the 50-130 mark with me being on my 3rd combo. Has anyone else experienced this? If so, what are your thoughts? Have you managed to get to U? Or have you stayed D but with very low levels?

Jim Allen · « **Reply #1 on:** March 16, 2019, 02:21:51 pm »

Hiya

You only switched 5-6 weeks ago to Truvada and Dolutegravir right?

So I would give it time firstly to work and are you taking anything OTC besides your HIV meds?

Marcanthony · « **Reply #2 on:** March 16, 2019, 02:52:23 pm »

Correct. But the VL is still D, drs are puzzled now.

No nothing, other than dapsone for PCP & anti allergy

Jim Allen · « **Reply #3 on:** March 16, 2019, 03:02:09 pm »

It's only been a few weeks and it's only a tiny VL

Give it time, are you taking the meds with food or without! Have they done a resistance profile? Are you having any other health issues like gut problems?

Marcanthony · « **Reply #4 on:** March 17, 2019, 08:01:19 am »

Thanks Jim.

With food as it helps with some of the side effects. Resistance was none, which is why the dr is puzzled. No, nothing like that. Just disturbed sleep patterns and dry sore skin.

Jim Allen · « **Reply #5 on:** March 17, 2019, 08:13:13 am »

Then it sounds like you're doing fine, just give it some time.

It's been only a few weeks and by many standards 50-130 copies is "suppressed/UD" I do understand the wish to get below 50 copies from a treatment perspective but some patience and not stressing it must be part of the plan 😉

I'll add that of course keep working with the doctor If with time the viral load contuines to be above 50 and adherence is perfect, your not taking anything that could interact and there are no heatlh issues, they could check drug levels to see if there is an issue with the levels

Or Prehaps dosing the tivicay twice daily in the long run ...
http://i-base.info/guides/8851

Jim

leatherman · « **Reply #6 on:** March 17, 2019, 11:56:46 am »

can i make another suggestion too? (remember I'm not a doctor; but someone who has lived with HIV for 35 yrs and had 26 yrs of meds since AZT) Do you have access to any other doctors in your area?

It's really quite concerning that a doctor would switch you, a treatment-naive patient with no resistance issues, through 3 different combos in 6 months, especially when your VL has been dropping (btw VL and CD4 counts are not necessarily straight line functions. Your VL bouncing around in those low numbers during the first few months is not exceptional nor extraordinary. most doctors would have continued for another 3-6 months before recommending a new regime.)

Also, I would point that dapsone has a horrible common side effect of itching and rash. Some people have to go to a half-dose/MWF dosing regime and other have to stop altogether.

best wishes on working all this out and getting a regime that works for you

bocker3 · « **Reply #7 on:** March 17, 2019, 12:41:34 pm »

I have to agree with Leatherman here -- it seems very odd that a doctor would be changing you from med to med so early in your treatment. I might consider seeking a second opinion, if that is possible where you are located.

While the meds today do seem to get MOST people to UD levels rather quickly, human beings are funny things and we don't all react the same way. Sometimes it is best to give things time.

In my case, it took me about a year and a half to reach an UD VL. Since that time, I have remained so for going on 13 straight years. Now, I may not be a typical case and given that I had low-level resistance to almost every Nuke available, I had a fourth drug (boosted Reyataz) added to my original regimen of Sustiva and Truvada. Once that fourth drug was added, it still took months to reach UD. I remain on those same 4 drugs today (well, we did switch from Truvada to Descovy to get the newer version of Tenofovir).

So -- while I am NOT a doctor and will not give you medical advice -- as a fellow patient, I would be seeking a second opinion.

Good luck,
Mike

Marcanthony · « **Reply #8 on:** March 18, 2019, 07:10:48 am »

Thank you all. I will seek further advice, but at one point I was seeing a different doctor each time I went, with different opinions.

I’ll let you know how I get on

Jim Allen · « **Reply #9 on:** March 19, 2019, 03:26:19 pm »

This was published yesterday

Its a 3 page decent (I think) Q&A on this topic that might help.

https://www.healio.com/infectious-disease/hiv-aids/news/online/%7B8373ca63-674d-4015-ac35-f4da653c7415%7D/qa-understanding-persistent-low-level-viremia-in-people-with-hiv

Marcanthony · « **Reply #10 on:** April 15, 2019, 09:33:55 am »

Hello everyone. So had my blood drawn a week ago and VL is now 57. It’s low, but still not undetectable. Back with Dr in 3 months & I’m hoping I will be U. It’s taking so long & still worry that I will never get this virus under control

Jim Allen · « **Reply #11 on:** April 15, 2019, 10:09:22 am »

57 is great.

Best, Jim

Marcanthony · « **Reply #12 on:** July 12, 2019, 08:49:37 am »

So, had blood work done and the viral load has increased. Only slightly 57 to 67... really starting to get worried that this is still not under control and it’s been almost 12 months since being diagnosed.

bocker3 · « **Reply #13 on:** July 12, 2019, 09:12:16 pm »

Viral load of 57 or 67 is really the same, not an increase.

I understand how this is stressing you out -- as I wrote above, it took me a little over a year and half to reach UD (which in 2007, was <50). For me -- it required adding another drug (boosted Reyataz) to my regimen of Sustiva and Truvada. We didn't switch my meds, just added. Of course, I have a low level resistance to almost every single nuke (the Truvada in my regimen), so this might be different from your situation. Did you have a resistance test prior to starting meds?

At any rate - while not, technically, UD, your levels are more than low enough to be considered "under control". Keep in mind that back in the early 2000's UD was <200. When HIV viral load testing started - way back in the 90's, UD was <10,000.

I'm not saying that you shouldn't be working with your doctor to figure this out, but that levels of viremia you have are so low as to not warrant any real worry. Yes, I know that is easy for me to say from where I sit, but it is none the less, true.

Keep at it with your doctor. Good luck and let us know how things go.

Mike

Marcanthony · « **Reply #14 on:** July 13, 2019, 02:09:27 am »

Thank you for that. Appreciate it.

Yes zero resistance and wild type. I hope the dr doesn’t try to switch me again

leatherman · « **Reply #15 on:** July 13, 2019, 07:25:46 am »

Quote from: Marcanthony on July 13, 2019, 02:09:27 am

I hope the dr doesn’t try to switch me again

if he suggests that, then go get that second opinion!!! There really is no good reason to put you on yet another regimen. Add another med, perhaps, but not switch meds totally. That's just bad science and medicine

Marcanthony · « **Reply #16 on:** July 13, 2019, 12:21:52 pm »

Thank you. Yes I will do.

I’m also wondering if because I take the first lot at 7.30 and then usually I need to go to the toilet a couple of times afterwards has something to do with it.

It could be taking so early and going the loo could mean there isn’t a high enough level of mediation in my blood. So if I move morning to 10 might be better? Something to speak to the dr about I think

Jim Allen · « **Reply #17 on:** July 13, 2019, 07:50:26 pm »

My two cents is you are overthinking this, visiting the bathroom is not going to change your blood plasma levels of the drugs (absorption) unless you somehow have chronic ongoing bowel issues as in having issues bad enough to cause a side order of malnutrition.

But keep working with your doctor, maybe adding an additional drug will knock the last bit on the head. Strictly on a personal level, I would not even give anything under 100 copies a second thought, even 100-200 I would be just like okay will check again next time but look we all have our own comfort levels.

Wishing you well, Jim.

Marcanthony · « **Reply #18 on:** July 14, 2019, 04:33:35 am »

Thanks Jim. I feel a under pressure from the health care team about not being U. Makes me wonder if they have targets to achieve.

harleymc · « **Reply #19 on:** July 14, 2019, 04:48:14 am »

I'm puzzled as to why you are being tested so often, it can't achieve any good and can only add to stress and anxiety.

It might be worth suggesting to the next doctor who wants to test your blood at these frequencies that he or she has an ethical responsibility to do no harm.

Marcanthony · « **Reply #20 on:** July 14, 2019, 05:10:21 am »

It was every month as I was very sick, but it has been
Moved to 3 months now. At which they do VL and CD4

Marcanthony · « **Reply #21 on:** July 16, 2019, 09:21:50 am »

So low and behold the doctors want me to SWITCH again!! Just called and they want me move to Descovy & evotaz. I’ve refused and going to see them face to face. It’s jyts crazy all this switching around

Jim Allen · « **Reply #22 on:** July 16, 2019, 10:16:37 am »

Sent you a PM

In short seeing them face to face is a good idea before doing anything

Marcanthony · « **Reply #23 on:** July 30, 2019, 03:10:38 pm »

Been to see ID again today & we’ve come to an agreement together on a plan for me.

VL done today to see if still increasing.
Changed evening dose to ensure 12 hours between each dose
If VL is still low, stay on medication for another 5 weeks and repeat test.

If all ok, stay as I am.

Good news about my CD4. It’s gone from 6 to 179! So very happy about that

Marcanthony · « **Reply #24 on:** August 02, 2019, 09:56:20 am »

Hey everyone.

Short update; VL test back from Tuesday and it’s back down to 57. We’ve made changes to the dosing times & my bowel issues are gone.

Back in 5 weeks for another VL to ensure still low.

Thanks for all your help & support. Hopefully this means it’s on it’s way down.

Jim Allen · « **Reply #25 on:** August 02, 2019, 10:06:52 am »

Cool update.

How are you feeling?

Marcanthony · « **Reply #26 on:** August 02, 2019, 10:26:36 am »

I feel much better thank you. Plus I’m very happy to hear my CD4 has risen. I know it’s not all about numbers, but I’m glad it’s goinf up. I can hopefully stop the antibiotics soon.
I had a good chat with people at IBASE & THT too, which was helpful.

Jim Allen · « **Reply #27 on:** August 02, 2019, 11:22:22 am »

Excellent update and, glad to hear that your feeling happier

leatherman · « **Reply #28 on:** August 02, 2019, 12:23:08 pm »

Quote from: Marcanthony on August 02, 2019, 10:26:36 am

I can hopefully stop the antibiotics soon.

how long as it been? It took me 10 years to finally sustain over 200 cd4s so I could stop bactrim. I was hospitalized twice with PCP, so while I kind of hated taking the antibiotic for so long, it did help me stay out of the hospital.

Glad to hear things are getting better. Hang in there! For some of us viral suppression just takes longer

Marcanthony · « **Reply #29 on:** August 03, 2019, 05:46:24 am »

1 years it’s gone from 6 to 179. So I’m hopeful in 6-7 months it will be way over the 200 mark

Marcanthony · « **Reply #30 on:** September 17, 2019, 11:19:31 am »

Hi all. So I had blood work done and finally after 12 long months I am now U!!

Never thought I would reach this mile stone

Jim Allen · « **Reply #31 on:** September 17, 2019, 11:58:27 am »

Congrats !

Ptrk3 · « **Reply #32 on:** September 17, 2019, 12:28:02 pm »

Great news, indeed! Congratulations!

Texland · « **Reply #33 on:** September 17, 2019, 01:05:29 pm »

Hey Jim, thanks for posting this (last March)

When I was on Truvada/Isentress and Truvada/Tivicay, I kept throwing viral loads between 75 to 150. I wasn't skipping doses. It seemed to settle down about six months into the Biktarvy trial. Now I'm maintaining UD.

Quote from: Jim Allen on March 19, 2019, 03:26:19 pm

This was published yesterday

Its a 3 page decent (I think) Q&A on this topic that might help.

https://www.healio.com/infectious-disease/hiv-aids/news/online/%7B8373ca63-674d-4015-ac35-f4da653c7415%7D/qa-understanding-persistent-low-level-viremia-in-people-with-hiv

Jim Allen · « **Reply #34 on:** September 17, 2019, 02:25:41 pm »

Can happen, glad you are doing well on Biktavy.

Best, Jim

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Author Topic: low level hiv viremia (Read 5649 times)