Question
Long term side effects from PEP.
24 January 2022. Related: All topics, PEP/PEPSE, Side effects.
I took PEP (Truvada and Isentress) five times in the last 10 years for 21 to 28 days each time. My doctor treated them as very safe and I suffer from anxiety, so it was prescribed after every situation of low risk with someone of unknown status. I’m a heterosexual male in my 40s, I have read the side effects which include bone density loss, kidney problems and even cancer from Isentress. Do you see those side effects could present in my case? Will these drugs affect my genetic material if I want to have kids? My kidneys are filtering 10% under average for my age but can’t prove that it wasn’t like that before taking these meds. Thank you for your help!
Answer
Hi, how are you doing?
The side effects you have mentioned are associated with these medications when on long-term use. Having 5 courses of 10 years is not going to lead to these complications. Your doctor was right to treat the course of PEP as safe.
During PEP side-effects are often noted to be short term and resolve when the course ends. There will have been no long-term effect to your genetic material. You are safe to have children.
Truvada is linked to kidney function loss. However, this is assessed long term and can present within 6 months of starting. In your case you were not on it longer than 28 days at a time. Are you aware of of any kidney problems you had before starting PEP? Filtering 10% under average does not indicate loss of function. As it’s an average many people will fall into the same bracket as you are are very healthy.
Josh.
Thank you, Josh!
I have a kidney cyst, but the doctor told me it’s not a concern.
I have been concerned about the cognitive functions too, but I assume this is also a groundless concern now?
Hi Mike, you doctor is right. The cyst is not a concern. it does not effect how your kidney works. Patients with lower kidny function are told to use this treatment with caution, but as your kidney is functioning well, there is no risk to being on PEP.
Hi Mike, 28 days is not long enough for long-term effects to be caused. Do you have any known problems with your kidneys?
Hi. I’ve been prescribed Sustiva with tenofovir as PEP, and I have read about long-term effects developed after Sustiva use.
Would a period of 28 days course be sufficient to damage kidneys, liver, and cause lipodystrophy?
So far, I’ve only been experiencing slight dizziness after waking up and diarrhea
Hi Stacy, as your course of PEP was 4 months ago, your current symptoms will not be caused by PEP.
Hi,ive used PEP drug twice now.I always make sure i take them correctly.A month ago i developed some flu bug and till date i still experience some discomfort on my throat and some pain (sometimes) on my chest.Could it be something associated with the PEP drugs i took 4 months ago? or im just being paranoid
Hi Mark, I am sorry that this has been your experience. In the UK this practise of giving out PEP is much less common. An exposure needs to be deemed high risk for PEP to be prescribed given it no longer outweighs risk.
Thanks for your clarification. I find it very misleading when there are sites that claim “no long term” side effects, or sites that use very vague definition of side effects and cite only the short term ones, none mention kidney damage is possible even if remote, if my experience these sites and groups are aggressively downplaying the true risks and tilting the balance their side. Doctors prescribe it for low risk situations considering it completely safe under the idea it is better to take it to be safe even if the chances are astronomical as in low risk exposures; also once a doctor prescribe it, another doctor won’t tell you to stop. The medicine itself messes with your mind even more so you can’t stop. I spoke to the nephrologist, there is nothing to be done. I should not have been prescribed the medicine for my risk but it is too late for that.
Hi Mark, kidney side effects are very rare from short course PEP. This is why it is considered safe. Safety is determined on a benefit ratio. To explain this, it uses the idea that for every 1000 PEP works for, 1 person may experience a kidney side effect. This is why it is safe because of the number of people it can benefit with causing harm to significantly fewer.
Have you been able to speak to your doctor about your kidney not returning to its baseline? This is a similar situation for how PEP can lead to bone density loss. Again, being a very rare side effect and needs to be managed by your doctor.
Isentress is an integrase inhibitor. This means that it prevents the HIV inserting its own genetic material into your DNA. This is how it impacts genetic material. It does not impact it directly, rather prevents an enzyme allowing this process. As it impacts the enzyme and not DNA there is no risk of cancer.
You mention it could present within six months but not within 28 days? My kidney function dropped over 20% during the last two weeks of treatment, it did recover but not to baseline. How is it that a medication that drops kidney function that much and after function doesn’t return to baseline is considered ‘safe’? Also, is there any risk from cancer from these medications? I read Isentress changes genetic material. How about bone density loss ? Thanks