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Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: vaboi on November 07, 2022, 12:40:28 pm

Title: HIV Meds, my experience
Post by: vaboi on November 07, 2022, 12:40:28 pm
I thought I'd share my history and experience with HIV medications and hopefully inform others on what to choose and what to watch out for when taking them.

In 2010, I was started on Atripla about 2 weeks after infection.  Other than weird dreams and increased diarrhea, this seemed to work fine until about 2014 when my eGFR indicated a result in the 60's.  The tenofovir disoproxil fumarate (TDF) in Atripla has a nasty side effect of making bones more brittle and reducing kidney function.  Lesson learned here is to avoid taking any drugs that contain TDF especially if you take NSAIDs (aspirin, ibuprofen, etc) regularly and have a lower body weight.

There is a replacement drug, tenofovir alafenamide fumarate (TAF), used in newer forms of combination treatments that allegedly has a lessor affect on bones and kidneys.  I have no experience with with this newer form, but I still would use caution taking it, eg limit any use of NSAIDs or any other med that affects your kidneys.  And watch your eGFR levels.  Never put your entire trust into what your doctor says.  If your eGFR is going down and below 60, all is NOT ok!

One more additional note on TDF, after experiencing some nerve pain shortly after stopping Atripla, bone ex-rays were done to see what might be the cause.  Cervical spondylosis was diagnosed and I was still in my 40's at the time!  Another reason I was glad to get off of Atripla when I did.

In 2014, I was switched to Triumeq which eliminated the TDF.  However, there were new concerns with this drug with the primary being abacavir, and it's effect on the heart.  My heart definitely beat more forcefully when on Truimeq.  This was the only noticeable side effect initially.  But then glucose levels started to raise into the 100's even when I didn't eat anything before the test.  A1C levels also began to raise nearer to the upper limit of being normal.  This caused me to look more into what I was taking.  I found that abacavir is known to raise glucose levels and cause A1C to read lower than what it actually is.  Uh oh!  Lamivudine was also mentioned to raise glucose levels in one source I found, although mentioned less frequently than abacavir.  I feel I would have been a diabetic in no time had I stayed on Triumeq, so it was time for another med change.

I was wanting to drop the abacavir from my treatment.  Dovato was not yet approved by the FDA and my doc wouldn't prescribe dolutegravir and lamivudine as a 2-pill regimen until then even though research clearly indicated it was safe treatment.  So the next best option was Juluca, which was just FDA approved.  Juluca is also a 2-drug combination containing dolutegravir and doesn't even contain lamivudine, so great.. that would totally eliminate any glucose issues.   However it required being taken with meals.  Despite that, I switched to Juluca at the end of 2018, and my glucose levels have since stabilized.  Other than perhaps some lingering diarrheal issues at times, it's been relatively symptom free, and is a tiny pill at that.

I feel Juluca is the best HIV drug out there especially if you can tolerate dolutegravir.  Who cares if it has to be taken with a meal.  I mean, we all eat at least once in a day right?  That sure beats having to worry about failing kidneys or bones with most of the current meds or becoming a diabetic with the others.

Also it is interesting to note that after changing from Atripla and Triumeq, it was my research and insistence that got the meds changed.  My doctor, who was also a certified infectious disease specialist, interestingly wasn't even recommending any change, and just did so because it was my insistence on it.