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Author Topic: Half dose of Atripla for 6 months daily... good figures but still side effects!  (Read 2844 times)

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Offline kevinincape

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Hi guys,

I started Atripla in March 2012 just after a year following my infection with HIV. I went through the vivid dreams of the first few weeks (loved them ;D) and an intense rash and swollen lips after three weeks (that was really bad :()... then my first blood test results came up (2 months later) and revealed CD4 above 600 and VL already undetectable. So everything was working well ??? till... I realised that I was often tired (for no reasons), feeling drunk and dizzy one hour after taking the pill (glad it was always before bed time) and waking up most of the time with a foggy brain thats lasts way too long during the morning... plus chromic hemorrhoids for the last 8 months (which I have not identify the cause yet)

Some of my friends that have been HIV+ for more than 20 years were getting concerned with my side effects as they have none (being on other regimen of drugs) and started telling me their own experiment: after being on their last treatment for 5 years they did cut the daily dosage by 2 (even if they had no side effects, just to experiment), and for the last five years their VL is still undetectable
, with good CD4.
Then 6 months ago, after my last blood test and a quick talk with my doctor, I decided to do the same (taking half a pill of Atripla daily). I have to say that my doc did not fully agree to my idea but I wanted to give it a go no matter what.
6 months later and a blood test done, my results are: CD4 above 800 and VL undetectable... it does prove one thing that the dosage of the pill is too high! And by the way I am 6 feet 3 inches for 83 kg, big boy!

but the feeling of dizziness in the morning and one hour after taking the pill is still here! Too bad :(

I ve read a lot of threads about side effects with Atripla, I am not the only one :-). The sustiva (efavirenz) has a big responsibility in them I am sure but now it's time to switch, it is way too strong! I meet a virologist tomorrow to talk about a new regimen of drugs, let's see :-) If any ideas or thoughts feel free :-)

Regarding my little "experiment", I am not saying that it is the best thing to do, I just wanted to share the result with u  :P

Offline mitch777

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While I can't comment on your experiment, I will agree that the Sustiva portion of Atripla can have strong side effects.
Time to move on IMO.
I switched to Truvada and Isentress.
Unfortunately I was one of the "lucky" 5% that ended up with insomnia from Isentress but am still thrilled with the med change.
Good luck! :)
31 years hiv+ (oct. 2013) with a curtsy.

Online Jeff G

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I'm wondering why you didn't just insist on a med change instead of experimenting ?

I know of a few people who worked with their doctor and went with a lower dose after having labs done to confirm it was safe to do so .

I support your right to take your meds any way you want short of endorsing it ,  but I hope others will choose to work with their doctors if they want to make a change .

I'm filing this thread under don't try this at home , the consequences could be horrific . 

Offline kevinincape

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Mitch, thanks for the advice, I am gonna check it up :-)

Jeff, I should have switched earlier for sure :)
But after doing this test, I am getting concerned about the dosage of those drugs :( I know they are life saver, no doubt of that but if half of the pill is still doing "the job", why this dosage? And I am not a tiny guy :o Have any other people have complained about it earlier?

Offline buginme2

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What's the purpose of your post?   It sounds kind of like you are advocating that drugs are concentrated too high and its ok to reduce your dosage.  That information is not correct when you consider an entire population it is significantly harmful for many many people.

It reminds me of someone saying "so and so smoked cigarettes for decades and never got cancer or heart disease" as if to discount the thousands who get sick and die from it every year.

Regarding the actual science of how a drug is dosed; 

First off your size (which you have mentioned twice) is not the only factor of determining a drug dosage.  How your kidneys and liver process the medication is a much more important factor in making sure you get an adequate concentration of medication.  Everyone is different and this has nothing to do with how tall you are or how much you weigh.

Instead of guessing if you are taking enough mediation have your doctor do a therapeutic drug monitoring test to see how much is actually being processed.  Otherwise your gambling, your gambling with your health which in my opinion is stupid.

For anyone else considering this.  Treatment adherence is really the most important aspect in remaining healthy for people who are hiv positive.   If your medication is causing you side effects to where you are considering stopping or reducing your meds talk with your doctor to switch to something more tolerable.  Taking HIV medication shouldn't be a struggle, especially when there are many medications that are easy to take with little to no side effects.

The reasons given for this "experiment" are BS
 
« Last Edit: June 11, 2013, 04:24:36 PM by buginme2 »

Online Jeff G

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What Bugs said ^ ^ ^ .

I'm hoping Ann will chime in on this thread , she knows a person who was on a reduced dose of Atripla until they switched combos . The thing is , he did it under to supervision of his doctor .

I'm asking for others to not experiment with their HIV meds , its a horrible idea . I'm glad it worked out for you but if you were my friend I would have tried to talk you out of doing what you did ... Please consider that if you try this with other meds you may not be as lucky next time and may end up with resistance issues to one or more drugs .

Offline kevinincape

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Woah buginme2! I wasnt expecting that type of response, thanks for it lol

As I wrote in the first post, i am not ADVOCATING at all for what I did. Sorry if I wanted to share it; I just wanted to know if other people had concerns about the dosage of those pills?That's it!
 
We all know that we have to take our pill daily and to make sure that the adherence is respected.

Online Jeff G

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Woah buginme2! I wasnt expecting that type of response, thanks for it lol

As I wrote in the first post, i am not ADVOCATING at all for what I did. Sorry if I wanted to share it; I just wanted to know if other people had concerns about the dosage of those pills?That's it!
 
We all know that we have to take our pill daily and to make sure that the adherence is respected.


Please don't take it as harsh criticism , its not offered as such . My comments are purely out of concern for your well being . I try and treat everyone on this forum as I would my own family and that sometime means offering advise when it wasn't asked of me . 

Offline kevinincape

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Regarding my doctor, even if he did not agree with my experiment, I did it under his supervision and checked my blood every month.

I just wanted to raise my concern. I meeting a virologist tomorrow and will ask about the dosage estimation
 :P


Offline mitch777

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Kevin,
I would stop being concerned about the dosage. period.
Just take the meds AS prescribed.
m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Ann

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    • Num is sum qui mentiar tibi?
Considering that you are not only reducing your Sustiva intake, but you are also reducing your tenofovir and emtricitabine intake, you are risking resistance to TWO classes of meds.

You are risking taking not one, but TWO WHOLE CLASSES of meds off your treatment table. Is that really a risk you wish to continue taking? Resistance doesn't always happen "overnight" - it can sometimes take time to develop when someone is messing around with their dosing.

Kevin, what kind of "supervision" did your doctor provide, other than more regular labs?

I'm surprised your doctor did not do TDM (therapeutic drug monitoring) on you - that would have been the responsible "supervision" to have you under. It measures the levels of the drugs in your system and will reveal whether you are receiving sub-optimal, optimal,or too high levels.

My partner started out on the usual 600mgs of Sustiva (back in the days before Atripla) and his Sustiva-induced side-effects were through the roof. They cut him back to 400mgs - using TDM as a guide - and eventually cut him back to 200mgs, also using TDM as a guide.

He still had side-effects, but they were more manageable. He did NOT cut down on his other two meds (AZT and lamivudine - aka Combivir) as they were NOT at too-high levels. They were just right.

During the last few years of being on Sustiva 200mgs, they switched him from Combivir to Truvada. No change in side-effects. He is now on Intelence (etravirine) and Truvada and feels much better for it.

For the record, my partner is pretty much the same size as you - slightly taller height, slightly lower weight. Having optimal drug levels in your body has much more to do with your body's metabolism, liver function and kidney function than it does your height and/or weight.

I strongly suggest you stop messing around with your dosages and just get on a new combo.

I'm on Prezista (darunavir), Norvir (ritonavir) and Truvada (tenofovir + emtricitabine) and I really don't have any side-effects to speak of. Certainly not troublesome ones. I like it and overall, I feel much, much better since I started meds. (This is my first combo, will be on it a year in July.)

It's either three or four pills a day, depending on whether you're getting the older two-pill Prezista or the new one-pill Prezista.

I was switched to the one-pill Prezista with my last refill and it's made no difference. I take them all in one handful/gulp regardless of it being three pills or four.

It's a once-a-day combo and just as easy to take as a one-pill, once-a-day combo.

I emphasis that because the Truvada/Isentress option involves taking Truvada once a day, but Isentress must be taken twice a day. 

Get that combo changed - while you still have plenty of options left.
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

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Offline mecch

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Regarding my doctor, even if he did not agree with my experiment, I did it under his supervision and checked my blood every month.

I just wanted to raise my concern. I meeting a virologist tomorrow and will ask about the dosage estimation
 :P

You had blood levels done every month, for a dosage reduction that the doc didn't support???  Hmmmm.  Ok.

The push back is for several reasons.   

1) There are too many HIV+ people who FEAR anti-virals.  Too many people who are ignorant about the drugs and the experience of being on them.   So, nobody wants to encourage people taking matters into their own hands, if that person is wrongly fearful and has wrong information about drugs...   Not that you do.  But someone who does fear drugs might "attempt this at home".   

2)  You went against doctors orders. But the doctor and your insurance supported you closely anyway.  This is a mixed message. I am finding it hard to compute.

3) Also you didn't clarify why you didn't change your combination when the problem presented itself.  That would have been the first choice.  The question remains unanswered.


All that said, yeah, it would be nice if we could all get exactly the least amount of drugs, needed for successful treatment.  So I agree with you and your friends observations.....

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline friskyguy

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So many of us continue to put all one's faith in and concentrate on CD4 numbers and an UD viral load and to normal labs as to one's apparent success of HIV treatment and to being in the "all clear".

There is more to HIV than just an UD viral load in the blood and maintaining normal CD4 numbers and undertaking other routine labs!!! It is a very good start however!!

Contemplating a reduced meds dosage experiment based on one's UD viral load and normal CD4 numbers is a big mistake!!!!!! We just dont have enough information on the possible continuing damage of HIV on other parts of the body despite being UD in the blood and maintaining normal CD4 numbers!

As more research is coming on stream we are realising that HIV may continue to be replicating in other cells like macrophages etc despite meds enabling one's blood viral load to be UD. I also recall reading recently that that up to 10% of men continue to have HIV replication in their semen despite being UD in the blood and maintaining normal CD4 counts......not yet clear if this means however that there is increased risk of possible virus transmission though!....more studies needed!

What about the ability of meds penetration into the brain? etc......will a reduced meds dosage experiment protect arguably your most important organ from possible HIV replication causing cognitive damage despite allowing you to be UD in the blood and maintaining normal CD4 counts in the blood?

What about cell/tissue inflammation due to HIV despite one being UD in the blood and maintaining normal CD4 counts? This is a key issue that is and will be attracting increased scrutiny ahead by researchers and how to reduce this threat to our bodies.

Will a reduced med dosage protect ongoing possible cell damage in your tissues from the virus......a condition that we cant measure by regular routine tests at the doctor's office?

Too many questions outstanding for my liking.......and I dont pretend to have the answers!!! Your regular doctor/specialist will not have answers either.

I truly believe that this experiment in meds dosage reduction is very foolish given the alarming clinical information we currently have of HIV and the possible negative effects on our bodies despite one being UD in the blood and maintaining normal Cd4 counts.
Sero converted Sept '10 / Confirmed + Dec '10
Jan '11, VL 9,500 / CD4 482 (32%)
Feb '11, VL 5,800 / CD4 680 (37%)
start Atripla
Mch '11, VL UD / CD4 700 (42%)
Jun  '11, VL UD / CD4 750 (43%)
swap to Kivexa and Efav. due to osteopenia diag. (DEXA) / kidney issues ( decline in eGFR to 77 )
start supplements - Vit D3 / Omega 3 / multivitamin / mini aspirin
Dec '11,  VL UD <20 /  CD4 670 (49%)  / CD4:CD8 = 1.4
all labs now within normal ranges
Mch '12,  VL UD / CD4 600 (51%)
Sep '12,  VL UD / CD4 810 (51%)
Mch '13   VL UD / CD4 965 (56%)
Sep '13   VL UD / CD4 (not taken)
Dec '13   VL UD / CD4 901 (35%) / CD4:CD8 = 1.1  /  eGFR > 100

Offline kevinincape

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Thanks a lot for all your responses and advices  ;D Just met a virologist today and I am switching to Complera tonight.

Ann: Thanks for sharing. I ve never heard of TDM (therapeutic drug monitoring) before, I had no idea it was actually possible to do these kind of tests.
The only "supervision" that I had while I was doing my little experiment was just more regular labs. I do know now that the dosage might be too high for ME so I will think of TDM next time if everything works well with the new combo.

Mecch: This whole thread wasn't about encouraging people to do what I did, but to share what I experimented. I am glad I did it cause I know now about TDM. We all have different metabolisms but we all have to face a lifetime treatment (till now ::)), and if it s possible to adapt those treatments with the right medical information in order to avoid taking too much of those chemicals on the long run, I will do so ;).
I live in France so there is no insurance here, it's all taken care by the government for all of us no matter what your GP says (which is good cause 15 years ago when it was still a mess with the drugs, a lot of people were'nt listening to their GPs at that time and for some of them, it did save them) . I didnt change the treatment cause despite the side effects I knew it was working (at least good figures), so I just wanted to decrease those side effects. Now that I heard about TDM, I will not do it again ;)

friskyguy: thanks a lot, thats exactly this type of questions that I wanted to raise ;D

there were not her supervisions than las test

Offline mecch

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I clearly understand that you are NOT trying to persuade others to cut their dosage.

The observation you are getting in this thread is that your experiment was NOT informed. 
"I didnt change the treatment cause despite the side effects I knew it was working (at least good figures), so I just wanted to decrease those side effects. Now that I heard about TDM, I will not do it again."

When a treatment doesn't work, there are plenty of other choices.  The correct thing to do at that time was to ask specialists, in other words, your doctor, to solve your side effects problem.  The doctor may have offered TDM, or he(she? :) ) may have changed your combo.

So you had 6 months of unnecessary monthly blood draws, and six months of a treatment experiment which was unnecessary (and dangerous. though luckily you did not pay a price!  ;D)   

Also, the French state paid for that.  My point was, wouldn't it be all nice if we could be "cowboys" and do what we want, with unlimited resources.  What if every HIV+ person in Paris decided to "experiment" with their treatment, and the French health service paid for monthly draws on everyone.....  And fix every bad result.

I  am surprised you got monthly blood draws to support an "experiment" that you discussed "briefly" with your doctor, who disapproved, and yet still got monthly tests, paid for, for something no doctor supported.  That's all.  Good for you that it worked out. 

We can't all do that.  The system will collapse.  That's my point.

Anyway, glad it didn't hurt you, and glad you are continuing to learn about treatment.

« Last Edit: June 12, 2013, 02:29:55 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline kevinincape

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Good for me it did not hurt me :P
I knew about the potential risk of resistance but I was willing to take risk. Nonetheless, my doc should have told me about TDM cause he knew about my side effects.

I am learning every day indeed :P


Offline mecch

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I am confused why your doc did NOT offer to change your combo.  But somehow was involved in this 6 month experiment.  Maybe, change doctors??
I changed doctors when my specialist resisted my complaints about Atripla.  First, I read him the riot when I finally did change and things radically improved.  But then a year or so later he made another mistake.
You know what they say.  Fool me once, shame on you. Fool me twice, shame on me.
I didn't wait for the 3rd mistake, I switched.

Also, je m'imquiète pour toi, cherie.   Don't "take the risk" when expert, medical advice, can usually find the workaround...  Its a matter of finding a really good doctor, maybe.

Really I just get a little scared when people take heresay from non-experts about HIV.  (Such as maybe alternative types who really don't trust at a very basic level the current HIV science / treatment / big pharma, etc.  which I was worried I got a whiff of around the little info you posted about your friends...)

Please be careful!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline kevinincape

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Ironically, my concern about the dosage of the drugs is making headlines this weekend in France.

Dr Jacques Leibowitch just launched a book here called "Pour en finir avec le Sida", that presents the results of his last study.
After conducting a study on 100 HIV+ people under treatment (with undetectable VL) and by decreasing steadily the dosage over 10 years, they found out that the VL was still undetectable even with a 75% reduced dosage of the original prescription.

The debate is on... but we do have the right to be prescribed the right dosage >:(

For people who speak French: (starts at 43:10 min)
http://pluzz.francetv.fr/videos/on_nest_pas_couche.html





Offline Jmarksto

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This discussion is interesting, and here is a similar study. I suspect that we have not heard the last of dose reductions, although I can't imagine cutting my dose myself.

http://clinicaltrials.gov/show/NCT01778413

The main objective of this study is to determine the feasibility of maintaining virologic suppression on standard plasma viral load (limit of detection 37 copies / mL) of a dose reduction strategy of ATRIPLA ® once a day to three tablets per week in patients infected with HIV-1 with sustained suppression of plasma viral load standard for more than two years.
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

Offline mecch

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Dr Jacques Leibowitch just launched a book here called "Pour en finir avec le Sida", that presents the results of his last study.


Hmm....   That book was published in 2011 as were his appearances on French TV plugging it.  Anything new?  The link doesn't work outside of France, by the way. 

I can't find much of a publishing history, just one note that he was involved in early HIV/AIDS discoveries, research.....

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline newt

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Quote
Contemplating a reduced meds dosage experiment based on one's UD viral load and normal CD4 numbers is a big mistake!!!!!!

After 9 years on triple therapy I have, after discussion with my doc, cut the tenofovir out my combo, and am taking boosted darunavir (Prezista) plus FTC (Emtriva) alone, all 1 x day. Started this week.

Doc has many patients with suppressed viral load who have gone on cut down/reduced dose combos, mainly because of immediate side effects or concerns (like mine) about long term side effects. There is modest extra monitoring at the start to check viral suppression and no change in immunological response, and as he says, there are no studies, but the proof of the pudding is the the blood work, not the prescription.

Will report in 1 month when I get my extra viral load test.

A clinical decision between a patient and a doctor about the patient's treatment is not an "experiment," it is a treatment choice, however you choose to characterise it (wise, unwise, fearless, stupid et al).

- matt
"The object is to be a well patient, not a good patient"

Offline kevinincape

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I edited the video and saved it here:

http://ovh.to/wgct4gH

just watch it with VLC software :-)

Mecch: I didnt know the book was released in 2011, which doesnt change much things anyway, and he was invited this weekend on French TV to talk about it and the content of it (his study). It takes time in France to get this type of topic mainstream! Saying that the dosage of the drugs is too high do not please everybody here and elsewhere, it s the same thing than saying that what the government is doing to HIV+ patients is not efficient >:(

Jmarksto: nice study  ;D , we ll wait for the results

newt: I guess we share the same concerns, the long term side effects. You are right about treatment choice  ;)




Offline Hellraiser

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I would think the more severe issue would be that you are literally cutting the Atripla tablets in half, I was under the impression they are time released and thus would need an intact tablet to function properly?

I have fooled around a fair amount with my dosing (after having been religious in my dosing for 3 years) after I was forced to go 5 days without meds last year and I've not seen any serious lapses in my blood work since.  I wouldn't be surprised if the amount of drug needed to combat the virus is a lot lower once it's under control.

However, cutting a pill in half and taking it is a TOTALLY different concept altogether.  Are you in a country with socialized healthcare?  If so just do the TDM and then let a doctor figure out what the proper amount of medicine might need to be?  Seems a lot safer than just going "Let's see if THIS kills me!"

Offline newt

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Cutting Atripla in half may explain the continued side effects, breaking the skin of the tablet allows the efavirenz (for it is this drug that is the problem) to get into your bloodstream more quickly.

A better way to adjust the efavirenz dose is to get doc to prescribe Atripla as its compnent drugs. Efavirenz comes in a handy range of tablets and capsules.

An even better way to manage efavrienz side effects is to use another drug.

- matt
"The object is to be a well patient, not a good patient"

Offline kevinincape

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Offline mecch

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An even better way to manage efavrienz side effects is to use another drug.

FAF  :D :D
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline friskyguy

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Will report in 1 month when I get my extra viral load test.

A clinical decision between a patient and a doctor about the patient's treatment is not an "experiment," it is a treatment choice, however you choose to characterise it (wise, unwise, fearless, stupid et al).

- matt


That's great newt and I hope your treatment choice with guidance from your doctor/ experiment with your doctor or whatever one wants to call it  ;) works out, whatever that means, will be in your favour.

Purpose of my comments above is to gently remind friends here reading this thread that only relying on being UD and maintaining good CD4 counts and maintaining good labs is not the end of the story about beating HIV and potential replication of the virus in other parts of the body. We all need more information.
Sero converted Sept '10 / Confirmed + Dec '10
Jan '11, VL 9,500 / CD4 482 (32%)
Feb '11, VL 5,800 / CD4 680 (37%)
start Atripla
Mch '11, VL UD / CD4 700 (42%)
Jun  '11, VL UD / CD4 750 (43%)
swap to Kivexa and Efav. due to osteopenia diag. (DEXA) / kidney issues ( decline in eGFR to 77 )
start supplements - Vit D3 / Omega 3 / multivitamin / mini aspirin
Dec '11,  VL UD <20 /  CD4 670 (49%)  / CD4:CD8 = 1.4
all labs now within normal ranges
Mch '12,  VL UD / CD4 600 (51%)
Sep '12,  VL UD / CD4 810 (51%)
Mch '13   VL UD / CD4 965 (56%)
Sep '13   VL UD / CD4 (not taken)
Dec '13   VL UD / CD4 901 (35%) / CD4:CD8 = 1.1  /  eGFR > 100

 


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