On Prep Extremely Exhausted/achy/weight Gain

[chibtm2breed]

Longtime lurker here sorry for the long post. I have been on PrEP for almost 9 months. Trying to decide if Truvada could be responsible. I'm so exhausted/achy in lots of places/icky and keeps getting worse (could never have the energy for a job at this point its that bad). I don't even feel like the hassle of sex lately. Also since being on Truvada I have had unexplained weight gain of 25 lbs. (and was quite overweight before that). I also swear that on Truvada alcohol affects me much more and less pleasant. Btw, I have been on other meds for blood pressure a longtime.

 

My old doctor had been trying figure this out but I lost her and have seen a nurse practitioner who ordered lots of tests (she's not familiar with PrEP) everything so far comes up negative. Normal metabolic panel - liver, kidney, blood counts; thyroid, Stds, B12, borderline low D treating, testosterone, EKG. All normal including my total cholesterol though odd in past been at around 200 this time came in at 128. The new nurse basically doesn't have any ideas what to try/consider, does anyone here?

 

I have read its rare but seems there is a separate test for lactic acid which to knowledge has not been run is that worthwhile though I see weight loss with that? Would it show up in any other counts? Any ideas?

 

Thinking about taking a break from Truvada (never missed a dose so far). Last sex was 40 days ago so should be good on risk? How long if it's the problem to know it is or is not the Truvada, a few days, a week or (out of my system and feel better without it)? If I stop how long do you think I need to get back on it before risky sex?

 

Any ideas either related to Truvada or not would be helpful. Thanks.

[gaynevets]

Truvada takes a week to accumulate in the body to therapeutic levels. Presumably. It takes a week to flush out of the system, as well. A recent study demonstrated that while women need to take it daily, men can get by with twice a week, although daily continues to be the standard frequency of intake.

[bearbandit]

Please no! Men cannot "get by" on just twice a week: that would lead to blood levels sufficiently low that protection would be inadequate. The IPERGAY study (event based dosing: two beforehand, then one afterwards and another 24 hours after that) has shown similar results, but it's probably good practice to go the full course as in the USA PrEP guidelines. Cis-women need 21 days before the full protective effect is there and there isn't sufficient information for pre-downstairs-op transmen who use their vaginas for sex.

If you're considering a break from truvada to see if it's the cause of the problem (possible, but unlikely, in my lay opinion) at least seven days after your last possible exposure and then if the break is longer than two or three days (the time it takes for the drugs to leave your system), you'll need to do the full seven day loading again before taking loads.

The symptoms you describe are all fairly vague and some are definitely associated with hypertension and its regulation. I hate to say this, but it could also be simply age, or even depression. A few people have noted a decreased tolerance for (and enjoyment of) alcohol while taking truvada, but that's pretty unusual. As far as the weight gain goes, it's another possible but unlikely, but weight gain could account for an awful lot of the rest, especially if you don't feel happy about it.

Hope you get things sorted...

[chibtm2breed]

bearbandit, I think you had a severe reaction to Truvada? How did it show up? Also I should have mentioned though she was noted it was not concerned my liver ALT was slightly elevated at 53 U/L, reference range 9-46 in case that makes a difference.

[gaynevets]

Yes, I did not mean to imply I was advocating the "twice a week" regimen! Those on it daily should remain on it daily whilst sexually active.

[LarsLukas]

Ive been on prep for 2 yrs.... ya I think it fucks with my system.... but im too slutty to stop and see if it is the drug.

Ive had the shits.... thought it was from truvada/prep but they think it is IBSD... add that to my dairy and lactose issues, and now beef and pork products give me severe cramps. Im a midwest guy that loves his beef.. i mean steak. 

Never really could handle my alcohol very well.... only drink hard liquor and love my shots... and drink till im drunk 8-12 drinks/shots in a 2 hr period does me in.

Also took depression meds, stopped taking them and feel much better, more energy, more erections for no reason, but still have the stomach issues

im 47 avg ht/wt... very high libido..

[tboyer]

I'm not able to take Truvada, but for the time I was on it I tolerated alcohol much less. Others in SF have told me the same thing, though not everyone has experienced this

Edited March 23, 2016 by tboyer

[bootmandc]

Will you define/expand ...  decreased tolerance for (and enjoyment of) alcohol         I tolerated alcohol much less. 

 

Makes you sick?  Bad hangover?  Just don't like taste?  Feel effects sooner?    Reading online seems to be a few hits on all of these so curious about experiences here.

 

Thanks.

[bearbandit]

bearbandit, I think you had a severe reaction to Truvada? How did it show up? Also I should have mentioned though she was noted it was not concerned my liver ALT was slightly elevated at 53 U/L, reference range 9-46 in case that makes a difference.

 

I had possibly the most severe reaction possible to tenofovir, which happens to around 1 in 100,000 people with HIV; there's every reason to think that the only side effect of truvada commoner in guys using it for PrEP rather than treatment is the dreams issue, which is caused by emtricitabine. I had damage severe enough to my kidneys that I was pissing away vitamins and minerals rather than recycling them (Fanconi's syndrome): the very least of my problems was having to remove my PA because I couldn't deal with the calcium buildup on it. Among the minerals I was severely deficient in was potassium, which is responsible for regulating the heartbeat and for rational thinking as the firing of neurons depends on a sodium/potassium interchange. I was, I've since discovered, going to be sectioned under the Mental Health Act if I refused to go into hospital so severe was my illness and its accompanying irrational thinking. I also developed osteopenia due to my inability to retain calcium. I now have prescribed a wide range of minerals and vitamins to replace what I piss away.

Please remember that this illness/reaction to tenofovir was exacerbated by having an incompetent doctor who didn't pay attention to my blood results, and that Fanconi's syndrome is extremely rare: I'm aware of literally a handful people in the UK who started down the road towards Fanconi's but who had more competent doctors than I did. To have it as severely as I did lead to me being the "show and tell" of the year for my consultant...

I drank heavily up till the beginning of last year but neither component of truvada gave me any problem when combined with alcohol. Truvada, or rather the tenofovir component, is known to cause some gastric upset: bloating discomfort and IBS-like symptoms are not unknown, but can be partially at least resolved by taking truvada with food (or if that upsets your guts, on an empty stomach): for absorption purposes it isn't dependent on food, so whichever works best for you. If you have gastric problems with it, cutting back on fat, especially animal fats, I'm afraid, can help, as can yogurt containing lactobacillus bacteria.

[tboyer]

Will you define/expand ...  decreased tolerance for (and enjoyment of) alcohol         I tolerated alcohol much less. 

 

Makes you sick?  Bad hangover?  Just don't like taste?  Feel effects sooner?    Reading online seems to be a few hits on all of these so curious about experiences here.

 

Thanks.

tenofovir tended to make me sick and have a worse hangover on alcohol

Edited March 23, 2016 by tboyer

[BarebackFan]

When do you take the pill?

I had a little bit of fatigue with Truvada, but wasn't too bad. I switched taking it from morning until nighttime and I've not had an issue since.

[Guest kazore]

Prep made me lost almost 8kg.

Why don't you stop for a month or two?

Prep take more than a week to flush put of your system. It takes about a month.

[6811283]

Prep made me lost almost 8kg.

Why don't you stop for a month or two?

Prep take more than a week to flush put of your system. It takes about a month.

Just be very aware of your risk factors if you stop taking PrEP. It's hard to revert back to using condoms if you quit them when starting PrEP. I know a guy (yeah, I know, anecdotes...) who stopped PrEP due to side effects and got HIV.