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.
Hi Thato, no this does not mean PEP has failed. When did you first notice these symptoms?
As you have now completed your course of PEP these symptoms are not caused by your treatment. If you have noticed these for a while and they have not come on recently, these symptoms hav appeared too early to be a sign of HIV.
I was on PEP and I finished my dose 2weeks ago but I’m still experiencing mild headache, inche skin and muscle inches and pain especially on the groin. Does that mean PeP failed?
Hi Empress, if you are feeling concerned about your health please go the emergency department/see your doctor.
I have been on prep for more than 40 days but I stopped taking it immediately i felt this Sharp pain on my stomach and the left side too I’m so worried now about my kidney because I’m feeling feverish everytime with stooling
Hi John, there are only 2 licensed frugs for PrEP, Truvada and Discovy. They both contain tenofvir. Have you discussed management with your doctor? If these stones are small enough they can be treated with ultrasound and not require surgery. It is important to have your kidneys tested. Treatment can be changed when knowing how your kidneys are functioning. e.g., a lower dose of tenfovir can be recommended.
Hi Josh, I know I have been living with these small stones because I was tested a long time ago (ultrasound) and they said I had small stones and I thought that’s strange, because I didn’t get any issues whatsoever, so I kind of forgot about it. Didn’t bother me at all.
That changed when I started TDF. From the very first pill I started feeling severe pain in my ureters and kidney area. I didn’t realise what was going on until after a week after starting PEP. I figured out that since I get severe back pain and also my blood pressure is high all the time since starting the meds, that it probably has something to do with those small crystals I was diagnosed a long time ago.
While having these stones and the pain from them, it’s impossible to keep taking these meds, its dangerous. And removing these stones would probably require me to go under surgery, which is not something I am prepared to do right now, but will have to do something about it in the future.
My kidney function probably dropped, but I didn’t test, I got more bubbles in my urine, more foam, probably creatinine levels got higher, but continuing with the drugs was not an option and my doctor said if no test to demonstrate higher creatinine levels, which would require a switch to different drugs, then no further help from them.
You still didn’t answer my question about safer drugs for PrEP that don’t affect kidneys.
Hi John, have you had your kidney function tested? and have you been offered treatment for these crystals? If your kidneys are still functioning well, TDF would still be recommended. Truvada is the only combination of PrEP that is routinely used and it does contain TDF. How do you know you have been living with the crystals for so long?
Hi John, it turned out that my high blood pressure and kidney pain was due to small kidney and ureters stones that didn’t cause any problems prior to starting Acriptega due to its tenofovir content. These stones are small enough (1-4 mm), that they didnt ever bother me before being prescribed tenofovir or bactrim, another drug which caused similar problems. Both of these drugs seem to create small crystals in the kidneys, leading to pain and symptom onset of high BP.
These small kidney and ureters stones don’t come out with urine unfortunately, so I have been living with them for something like 20 years with zero symptoms or problems. And I also took a lot of drugs with zero problems whatsoever (including renally excreted drugs).
Anyway, what are some HIV drugs that could be used as PrEP in the future that don’t form crystals in the kidneys? I would like to get them from my doctor, but I need to know for sure which ones don’t cause the same issues as tenofovir.
Is zidovudine and indinavir capable of forming crystals or stones in the kidneys? Google search says indinavir might cause kidney stones. What are your suggestions?
Hi John, your doctor is right. There is no risk of HIV transmission from what you have described. Your doctor also did the right thing by checking your kidney health prior to starting PEP. A decline in kidney function would not occur so quickly while on this regimen. As you are on an ACE inhibitor are you known to have high BP? Starting an ACE inhibitor while your BP is still not exceedingly high would not be routinely done. There would also be other measures before starting inc. low salt intake and increased exercise. Drinking water can increase BP as it increases how much fluid is in the body.
Hi, i live in a developing country (Romania) and went to a public hospital late at night due to tooth pain. The dentist office didn’t look modern enough (like the private dental practices are), and the dentist didn’t look genuine enough for me to trust him. He only took a dental spoon excavator and pressed on my aching tooth. Said that the only thing that can be done at this point is removing my tooth out completely and told me to come back a few hours later to remove it.
I left the hospital and didn’t come back to remove my tooth, with a fear that due to his negligence i might have been exposed to Hep B, C or HIV. The excavator that he used to press on my tooth looked clean, with no visible blood, however i was paranoid about microscopic blood(?) which can’t be seen. I went then to an HIV center in my city and got tested for Hep B, C and HIV. Rapid HIV test was negative. Hep tests still awaiting results.
The doctor said that my exposure to HIV was non existent and that there isn’t such thing as microscopic blood and that the only potential exposure could have been with Hepatitis.
Still, i requested due to fear and anxiety to be given PEP, which consists of 3 drugs taken as a pill once a day, these are Tenofovir diproxil 300 mg, lamivudine 300 mg and dolutegravir 50 mg. The name of the bottle of pills is Acriptega.
I was not aware of the toxicity of PEP/PrEP drugs before being prescribed them. I didn’t think that such potentially nephrotoxic drugs can be offered as PEP or PrEP. The doctor took my blood to check for kidney health, liver health and general blood test before prescribing the drug.
I am now about to take my 3rd pill of Acriptega, but i have high blood pressure since taking them. Right after my first dose of Acriptega, my blood pressure rose to 130-140 for heart and 90 for kidneys. The blood pressure is constant and doesn’t seem to be lowered by ACE inhibitors for long, it raises back again shortly after. Drinking water also increases my blood pressure. As i understand, it is due to Tenofovir blocking the kidney proximal tubules or something? I don’t have decreased urine output, but i have constant high blood pressure while on the med.
I want to know should i continue risking my kidneys and heart due to fear of contracting HIV, or is the medication more risky at this point than the low probability exposure to HIV? I requested to be given other meds as PEP, but the doctor denied and said that the combo i am taking right now is safer and better than the other ones.