Truvada/Isentress - 6 Bad Side Effects - And Terrified

[Hopeful2020]

Hi Everyone, I did 28 days of Truvada/Isentress for PEP in Feb. 2020 - and the last 4 months have been horrific.  I'm being treated by my Internist, Neurologist, Cardiologist and an ENT doc - they're trying to treat my 6 symptoms, and they're not interested in trying to tie my symptoms to the PEP meds.

I'll describe my symptoms, all of which are possible but UNCOMMON for Truvada/Isentress, except my insomnia, which is more common.  It seems strange that I would have 6 continuing (uncommon) side effects, from only a 28-day course - and most of my symptoms started AFTER I finished the 28 days of PEP.  (My recent HIV test was negative.)

I'm hoping that someone can give me some information that will help me get through this, as it has put me into my first-ever depression, and I'm seeking out some therapy now.  Here are the symptoms - and when they appeared:

1.  Heat surges/mild sweats - just a handful of times DURING PEP - and became worse after the end of PEP, but have started to fizzle out mid-May (so I'm hopeful)
2.  Burning/Flushness sensation of my face/forearms/hands - started at the very end of PEP and became intense in the following 2 weeks, continuing for 2 more months, and have also started to fizzle out mid-May (so I'm hopeful)
3.  Toes became numb - over a month after the end of PEP - and seems to be fizzling out (so I'm hopeful)

The above are all peripheral neuropathies, which are possible, but not common for Truvada/Isentress - but isn't it strange that they would occur from only a 28-day course? (My neurologist said to give it time.)

Here are the much more troublesome side effects that are wrecking my life:
4.  Tinnitus - began almost a month AFTER the end of PEP.  Waxes and wanes and some days have been mild recently, but very difficult to handle
5.  Insomnia - I had vivid dreams every night during the 28 days of PEP, but no insomnia.  But about 2 weeks after the end of PEP I started waking up every hour or so (sometimes due to the heat surges) - and now I can barely sleep.  I wake up after 60-90 minutes of sleep and I'm awake the rest of the night, completely wired and incapable of sleeping at all.  This is really affecting my overall health.  I'm now working with a sleep clinic, but I want to understand if insomnia can be a chronic side effect of a short course of Truvada/Isentress (I keep reading that switching off of these HIV meds usually stops the insomnia, yet my insomnia began - and became much worse - several weeks after finishing the PEP.
6.  Finally, the most serious, I now have almost constant Palpitations and what's called PVCs (a form of arrhythmia) - that began several weeks after completing PEP.  They come and go all day long - AND my heart rate is now elevated during exercise (for example, if I take a walk, my pulse is around 105 - and if I run for 1/2 a block, I'm winded and short of breath).  I haven't been working out since COVID began, but I've been doing strenuous gym workouts for years and I've always had amazing stamina (until now - I don't think that I could even get through a light workout).  I've passed a stress test and I'm still being worked up by a cardiologist.  But this is very strange to me - the cardiologist is trying to treat the symptoms, but I need to understand if Truvada/Isentress might have damaged my autonomic nerves that affect the signals to the heart that affect heart rate.  My understanding is that this would be very very rare, but I'm hoping that someone has some thoughts about this.

None of this makes sense.  Prior to PEP, I was in excellent shape (my diet is great, I don't drink, etc.), with boundless energy.  Now, I can barely get through the day.  None of the doctors are interested in determining whether PEP is to blame, but I'd like to get a better understanding.

I'll be grateful for any insights.  Much appreciated.

[Jim Allen]

Hiya,

Sorry to hear that you have been feeling unwell and I hope you feel better soon.
I've moved your thread to here as the forum you posted in is designed for people living with HIV only.

I read your post three times and nothing you mentioned is specific to the meds, most of it started after stopping the meds and some of the items are listed in some of the pharma inserts but without causation or from legacy as cover your ass. Part of it could even be psychological but that's for your doctors to work with you on.

All in all, keep working with your doctors and if you have been diagnosed with peripheral neuropathy they should be checking common causes and perhaps looking at treatment, as there are meds that can reduce the symptoms for a lot of people.

I wish you well.

Here's what you need to know to avoid HIV infection:
Use condoms for anal or vaginal intercourse, correctly and consistently, every time, no exceptions. Continue taking PrEP as an additional layer of HIV protection.

Keep in mind that some sexual practices which may be described as ‘safe’ in terms of HIV transmission might still pose a risk for transmission of other STI's, so please do get fully tested regularly and at least yearly for all STI's including but not limited to HIV and test more frequently if unprotected intercourse occurs

Also, note that it is possible to have an STI and show no signs or symptoms and the only way of knowing is by testing.

Kind regards

Jim

Please Note.
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[Hopeful2020]

Hi Jim, first of all, let me give you a most warm "thank you" for all that you do for this forum.  I've often come here for information - and given the 4 months of symptoms and fear and depression over this, I joined today to seek out any guidance that anyone has to offer.  So, I'm especially glad to have you weigh in.

I think that the only symptoms that in my heart of hearts I believe are absolutely connected to the PEP are the 3 neuropathies and the insomnia.  2 of the 3 neuropathies (heat surges/burning sensations) did appear during the 28 days, and got much worse after, but fortunately are starting to fizzle out.  The toe numbness, as I mentioned didn't begin for over a month after the 28 days had ended, but it, too, is heading in the right direction.  I have an excellent and compassionate neurologist who has been advising me to be patient with the 3 neuropathies.

The insomnia sort of occurred "indirectly" a few times during that 28 days - on the nights when I would wake up with a heat surge (not really night sweats, just a light amount of sweating, but an intense feeling of heat), the heat surge would wake me up and I'd be so anxious that I couldn't fall back asleep.  But the more "classic" insomnia - waking up every hour or so 6 times a night in the beginning - and recently waking up after an hour or 2 of sleep and not being able to fall back to sleep at all - began about 2 weeks after the end of the PEP.  I'm connecting the insomnia to PEP because I've NEVER EVER had a problem sleeping (I can sleep on the floor of an airport if my flight gets delayed!). 

I'm going to start cognitive behavioral therapy for my insomnia in the next weeks, but I can't believe that all of these crazy things are happening at once (yes, it's possible that COVID stress is adding to all of this.  But I've always had a very good constitution so it just seems that 6 things happening at once would have to have a "trigger" - and PEP is the only thing that I can point to.)

The cardiac issues are by far the most serious (even though the tinnitus is maddening). 

I've spoken to a friend who works in the pharmaceutical industry who had mentioned that the LONG LISTS of side effects that are published for these meds are exactly what you said - the drug companies HAVE TO list them, even if they're very remote.  However, my concern is that all 6 of my symptoms have been on 1 or both of Truvada and Isentress.  And given that I can't identify why on earth I would all of a sudden come down with 6 symptoms, Truvada/Isentress has seemed to be the only logical conclusion.

But I have one additional question (if you'll indulge me - many thanks indeed!) - I've read many posts in the Side Effects Forum and all of my symptoms, especially insomnia, have been discussed there.  But I realize that many, if not, most of the posters have been on their meds for longer than a 28-day PEP course, as it's a forum for people who are living with HIV.  And I realize that side effects are usually (but not always) dose dependent.  So my question is - have you encountered many situations where side effects from a 28-day  course of HIV meds (and, in particular, Truvada/Isentress) leads to permanent/chronic symptoms?  [I'm really looking for a reason to be hopeful - hence, my name on the forum - as the doctors that I'm working with, good as they are, are not especially well versed on the various HIV meds.]

Many thanks.  Really appreciate your input!

[Jim Allen]

Hiya

I really have read and answered all your questions.

I never had a lot of things until I did, coincidence happens and I get this has been a stressing time for you. Anyhow keep working with your doctor's, I see no direct connection to your PEP myself.

Best Jim.

[Hopeful2020]

Thanks, Jim.  Makes sense - things can just happen for the first time.  So I appreciate your thoughts that we really can't put this on the PEP.  I'll continue to work with all of my doctors on these various symptoms.  All the best....