Might be having side effects, so I've gone off PrEP

[rawTOP]

I usually sleep on my belly and for a long time now (before going on PrEP) my neck will be a little stiff and if I sleep in one direction it sorta strains my neck and hurts a little. A few weeks ago the pain started spreading a bit into my shoulder and eventually down my arm - and not just when I'm sleeping and sometimes the other side as well. I should try a different mattress to see if that'll fix it, but habit keeps me sleeping in my own bed.

I started wondering if it was a side effect of the Truvada I'm taking, so I looked up the common side effects and found this listed first…

  Quote

Lactic acidosis (a buildup of acid in the blood), which is a serious, sometimes fatal, medical emergency. Symptoms of lactic acidosis include weakness, unusual muscle pain, trouble breathing, nausea, vomiting, a fast or irregular heartbeat, and/or feeling cold, dizzy or lightheaded

Source

Reading that made me recall that the last few months when I get up from the couch I sometimes get dizzy. I have to steady myself to avoid blacking out. It only lasts for a few seconds, but it matches some of the symptoms above. In the past I just chalked it up to me getting older and having (medicated) hypertension.

I called my doctor. He wants me to see a neurologist, but I'm going to try a few things first. I went off Truvada for a couple days and it did seem to get a little better, but then I went back on for a day or two and it got worse. So now I'm going to go off completely. I think it takes a week or so to get Truvada completely out of your system so we'll see how things are at the end of this week.

And I should mention that I did a full battery of blood tests earlier this month and everything came back normal - or at least pretty typical for what I'm used to seeing. I was low on Vitamin D, low on platelets, and slightly high on cholesterol.

I should also mention that I had what I thought was food poisoning last week – it got better and then sorta came back. None of that is unusual for me - I often get stomach bugs, but the timing is a little suspicious since abdominal stuff is a symptom of lactic acidosis.

It's not like I've got all the symptoms of lactic acidosis, but I've got enough symptoms for me to wonder what's going on. Being on PrEP is elective. I don't need to be on it. So it just seems like it would be prudent to not be on it right now if it could be causing the problems I'm seeing. After all, side effects were the primary reason I was opposed to PrEP initially. I've seen enough problems from (other) meds in my life to be wary. I need to remember the lessons I've learned and just be careful in this instance. And careful means not taking PrEP.

So I'm going to go off PrEP for a few weeks - maybe a month. If everything clears up I'll probably go back on it, but go off at the first sign of trouble. I'm not quite sure I trust Truvada. I mean it's generally well tolerated, but it is a rather powerful drug.

Edited January 27, 2014 by rawTOP

[bearbandit]

I understand your concern, but what you're describing could also (I'm sorry) be the effects of ageing, or any number of other conditions. I, too, was extremely concerned about the side effects of truvada when PrEP was approved (in fact I remember being extremely vocal about it here!), but then I'd come within days of death thanks to tenofovir which is one half of truvada (an effect which affects about 1 in 100,000 people per year - and it seems that people with HIV metabolise truvada differently as we get more side effects from it than people who don't have HIV).

I hope it turns out to be something trivial and easily dealt with...

[rawTOP]

  bearbandit said:

I understand your concern, but what you're describing could also (I'm sorry) be the effects of ageing, or any number of other conditions.

Yeah, I know… I just want to take Truvada out of the equation. The doctor doesn't think it's a side-effect, but since PrEP is elective he's fine with me going off it until we get to the bottom of things.

[bearbandit]

Good luck with it all...

[TigerMilner]

Thanks for posting this. Let us know how it turns out. I've been having some similar symptoms. I didn't think about it other than changing my routine since I started a regular job 7 months ago. I wrote the pain in my arm off to sitting at a computer most of the day. Ergonomics, you know. I'm not on Truvada, but I think Complera has some of the same meds in it. I'm gonna ask when I go for my blood work and ID spec appointment next month.

[bearbandit]

Complera is a combination of rilpirivine, emtricitabine (FTC) and tenofovir, the latter two are the components of truvada. I've only heard of one guy with HIV having lactic acidosis, but he's in the same position as me: a severely fucked system through long term therapy (we both started on AZT monotherapy). However, both components of truvada can get your liver upset, a symptom of which can be pain (aching like you've just done a damn good workout) in the long muscles. It's literally just occurred to me that I complained about such pain at my last check-up: the consultant was of the opinion that it was more likely a symptom of vitamin D overdose - I have to take a supplement since my kidneys crashed in 2012...

Not an answer, I fear, but I hope a little more information...

[wood]

This does highlight one thing for me, which reinforces why PrEP is a GREAT idea. For Neg guys who put themselves into some more risky situations, PrEP is great. However, if need be the person can stop taking it. This is the biggest difference between becoming HIV+ and needing to take medication, and using PrEP to prevent infection. Most doctors do not like to switch therapies on people "just because" and even with some side effects some are reluctant to do so. So if you are HIV+ and having issues, its more complicated than just going off, or switching to another medication.

I had a friend who is on combivir and sustiva for I think over 10 years. He wanted a once a day pill, but his ID doc said, this is really working well for you, and I dont think switching at this time is a good idea. Dont get me wrong, people can switch and do. But many ID docs like to keep as many treatment options as possible in their arsenal just in case something major happens.

[TigerMilner]

Good information from BearBandit and Hollywood. I got my Complera refilled today and re-read the possible side effects. I don't want to switch as it has been working great and I know that a one pill a day regieme is a luxury. I want it to keep working. Most ID Specialists don't want to switch you around because in the event you pick up a new strain, and possibly a resistant one, you need to have options. Once you switch from one drug to another you often can't switch back. This virus is a bastard because it mutates if given a chance and the old regieme may not work again for you.

It is an excellent reminder that even though today we are very fortunate to have so much less drug issues than the pioneers like Bear had to endure, this is still a very complicated medical issue that can have serious implications. I don't think I am having any serious issues, but I am reminded to always pay attention to my body and to be aware of changes. And to report them. Another reason regular bloodwork and doctor visits are vital. Bear mentioned one, liver or kidney damage. Like Rawtop pointed out, these are very powerful drugs. Liver or kidney damage can result and that can kill you.

[rawTOP]

Just an update… I went off for a couple days, then got nervous and went back on for a couple days, then went off for nearly a week, then got nervous and went back on.

I also changed which bed I was sleeping in and the change of bed seems to have gotten rid of 90% of the pains I was having. So thinking it was side effects of PrEP was just needless worry, AFAIK. Unless being off for a week was enough to clear things up.

[NYCBearpig]

  rawTOP said:

Just an update… I went off for a couple days, then got nervous and went back on for a couple days, then went off for nearly a week, then got nervous and went back on.

I also changed which bed I was sleeping in and the change of bed seems to have gotten rid of 90% of the pains I was having. So thinking it was side effects of PrEP was just needless worry, AFAIK. Unless being off for a week was enough to clear things up.

Is there a period of time that you must be on PrEP in order for it to remain effective?

[rawTOP]

  NYCBearpig said:

Is there a period of time that you must be on PrEP in order for it to remain effective?

You get full protection after 5 days on PrEP. Studies are underway to see if there's full protection at lower doses.

[wood]

  rawTOP said:

Just an update… I went off for a couple days, then got nervous and went back on for a couple days, then went off for nearly a week, then got nervous and went back on.

I also changed which bed I was sleeping in and the change of bed seems to have gotten rid of 90% of the pains I was having. So thinking it was side effects of PrEP was just needless worry, AFAIK. Unless being off for a week was enough to clear things up.

its funny how things change once you are on it. PrEP really changed me. Now I dont worry about becoming poz, I worry about taking the medication correctly and on time, lol. Also guys who I only used to top, I will bottom for now too.

[Guest JizzDumpWI]

I agree wood, I have no concerns about conversion, just enjoying dick and loads... If for some reason PrEP doesn't work; well, I'll deal with that. But most info suggests that isn't likely. So never even a thought at serosorting.

[wood]

  JizzDumpWI said:

I agree wood, I have no concerns about conversion, just enjoying dick and loads... If for some reason PrEP doesn't work; well, I'll deal with that. But most info suggests that isn't likely. So never even a thought at serosorting.

I still ask, more so because I dont feel like getting other STD's, and I figure if a guy has so idea when he was last tested there is less chance of that. Also I still dont think I would fuck with guys not on meds. I like people that take care of themselves.