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HIV Post Exposure Prophylaxis PEP Long term Toxicity Side Effects
Hello Doctor -
I have experienced long term side effects and toxicity related health problems after taking a course of HIV post exposure prophylaxis (also known as PEP). I took mine in February and was put on Combivir (AZT Zidovudine) and Kaletra to prevent infection after I was exposed to an HIV positive female.
Ever since then I have been struggling with health problems that seem to have no explanation. Fatigue, Crawling sensations, Weakness, bodywide muscle spasms, neuropathy, and now at the 8 month mark, I've lost about 18lbs of weight, and the fatigue is becoming more noticeable.
These bouts of illness have occurred every month since stopping the medications. Only recently (at the 9 month mark) begun to get worse. In September, i began having muscle spasms and twitching everywhere. Cramping in my calf and minor experiences of peripheral neuropathy, freezing cold and burning feet, aching and pain while trying to walk. An episode of numbness. Three days of severe foot pain. And the muscle spasms spread to nearly every random location on my body.
It seems to be progressing as I have recently developed myopathy and burning aching pain in my thigh muscles. I have had a clean MRI of brain, spine, and neck. I have had a clean EMG and Nerve conduction test, but it was only 2 weeks into the muscle spasms, long before the pain, weakness, and burning set in. I have had clean bloodwork from top to bottom with the exception of slightly elevated ACE levels, very low cholesterol, low testosterone, and extremely low estrogen (im male). Doctors are stumped.
I recently spoke with a guy named Edmond McNack (you can google his name and see several links). A guy who took HIV Post Exposure Prophylaxis (PEP) and ended up developing a severe case of Sarcoidosis. He told me that he's spoken to several people who took the meds and developed CIDP. This seems to be similar symptom-wise.
I have experienced long term side effects and toxicity related health problems after taking a course of HIV post exposure prophylaxis (also known as PEP). I took mine in February and was put on Combivir (AZT Zidovudine) and Kaletra to prevent infection after I was exposed to an HIV positive female.
Ever since then I have been struggling with health problems that seem to have no explanation. Fatigue, Crawling sensations, Weakness, bodywide muscle spasms, neuropathy, and now at the 8 month mark, I've lost about 18lbs of weight, and the fatigue is becoming more noticeable.
These bouts of illness have occurred every month since stopping the medications. Only recently (at the 9 month mark) begun to get worse. In September, i began having muscle spasms and twitching everywhere. Cramping in my calf and minor experiences of peripheral neuropathy, freezing cold and burning feet, aching and pain while trying to walk. An episode of numbness. Three days of severe foot pain. And the muscle spasms spread to nearly every random location on my body.
It seems to be progressing as I have recently developed myopathy and burning aching pain in my thigh muscles. I have had a clean MRI of brain, spine, and neck. I have had a clean EMG and Nerve conduction test, but it was only 2 weeks into the muscle spasms, long before the pain, weakness, and burning set in. I have had clean bloodwork from top to bottom with the exception of slightly elevated ACE levels, very low cholesterol, low testosterone, and extremely low estrogen (im male). Doctors are stumped.
I recently spoke with a guy named Edmond McNack (you can google his name and see several links). A guy who took HIV Post Exposure Prophylaxis (PEP) and ended up developing a severe case of Sarcoidosis. He told me that he's spoken to several people who took the meds and developed CIDP. This seems to be similar symptom-wise.
Have the same problem of neck muscles and shoulder pain 3yrs after taking pep... please if yu get the solution assist me l wishave I hd not taken pep. I think it's better off than the side effects am having now ... I have tried everything taking ginger and staying hydrated and avoid staying hungry has helped a bit. Please if yu get a permanent solution
Staying hydrated is the most important common solution for eradicating this generation of PEP medications' GI side effects. Liver and kidney impairment is possible but not very common and blood work is usually taken to monitor this on persons taking PEP for a 4 week stretch.
The toxicity of taking 4 week of these meds really does seem negligible, definitely no worse than the recreational hobbies most people brush off eg. alcohol, vaping, etc.
The body is good at clearing chemicals.
The toxicity of taking 4 week of these meds really does seem negligible, definitely no worse than the recreational hobbies most people brush off eg. alcohol, vaping, etc.
The body is good at clearing chemicals.
This is the Third time taking dosage of Pep but I am having problems. Stomach pain to be exact. what can be the solutions?
1 Comments
Main thing - Do not be dehydrated. Trust me. This is the reason for these side effects, which are the most common by far for PEP drugs that came out in the past 5 years. The body needs to clear these meds, specifically the load of these meds on the body is too high when one is dehydrated.
You, sir, fail to grasp that none of us are in a position to discuss side effects of PEP medications (none of us are doctors). Your question would be be much better addressed in MedHelp's HIV Prevention Doctors forums.
PEP is the very definition of "HIV Prevention". So this discussion is perfectly acceptable here.
As a side comment - every medical doctor on earth, and even the inserts for these medications say: "We dont know about the risks of long term toxicity or cancer related risks". Patients are routinely discouraged away from PEP unless their exposure is significant, due to the "Risk of Long Term toxicity". Rape victims (including a friend of mine) are often warned about PEP for the same reasons. Yet when someone posts that they're experiencing long term toxicity issues, everyone wants to call it stress? That's strange to me. We are talking about one of the most toxic medications on this planet, next to Chemotherapy itself. AZT has a long, bad reputation for toxicity risks that are well documented. So i hope we can have a serious discussion about that.
I have landed on a couple theories, so I wanted to toss them out there. The first is the possibility of mitochondrial toxicity induced primarily by the AZT. Apparently the solution for this is Carnitine supplementation, possibly with B1, B2, CoQ10, Selenium, R Lipoic and A Lipoic Acids, and Quercetin. Another seriously important factor is lipid replacement which I found "NT Factor" is heavily recommended in several published studies for those dealing with mitochondrial damage. There are recommendations like the Wahls Protocol for juicing vegetables for mitochondrial health - you can youtube her video (she sells nothing) Minding your Mitochondria.
The second theory is something related to IRIS - Immune reconstitution inflammatory syndrome. Its difficult to explain but simply put, the HIV meds do something to escalate your CD cells and your immune system latches on to an already resolved infection and thinks its still active. Thereby initiating an inflammatory reaction that is intended to protect you, but in fact begins to harm your own body. Basically fighting something you used to have, which is no longer there. I personally have always told friends that this feeling i get reminds me exactly of how Mono felt when I had it 8 years ago. Epstein Barr virus is listed as one of the pathogens that the Immune system can mistake for active, with IRIS. The treatment for this is apparently prednisone, if it doesnt stop on its own. Im at 8 months now and it seems to be getting worse.
Anyways ... I just don't know how to proceed. Im 38 years old, pass for 26 (literally) and have had perfect health for many years. yet now I feel like I am coming down with a neuro or motor degenerative disorder.
The second theory is something related to IRIS - Immune reconstitution inflammatory syndrome. Its difficult to explain but simply put, the HIV meds do something to escalate your CD cells and your immune system latches on to an already resolved infection and thinks its still active. Thereby initiating an inflammatory reaction that is intended to protect you, but in fact begins to harm your own body. Basically fighting something you used to have, which is no longer there. I personally have always told friends that this feeling i get reminds me exactly of how Mono felt when I had it 8 years ago. Epstein Barr virus is listed as one of the pathogens that the Immune system can mistake for active, with IRIS. The treatment for this is apparently prednisone, if it doesnt stop on its own. Im at 8 months now and it seems to be getting worse.
Anyways ... I just don't know how to proceed. Im 38 years old, pass for 26 (literally) and have had perfect health for many years. yet now I feel like I am coming down with a neuro or motor degenerative disorder.
I have not had any anxiety since coming off the medications. Anxiety can not cause documented peripheral neuropathy and bodywide muscle fasciculations that last 2 months. I am an intelligent person and I know when I am inducing my own stress and physical problems. I also know when i am 8 months post PEP and want to move on with my life but can't press any pounds in the gym anymore. Or get debilitatingly weak from walking 5 minutes on a treadmill. Walking.
I would like to have an intelligent conversation discussing the toxicity issues related to Zidovudine (AZT) therapy. Look in pubmed and you will see countless journal studies about it. Unless you guys think everyone there was just stressing out too. AZT is a toxic medication, and people who are considering PEP need to be aware what they may be doing to their bodies.
It is not stress. It is toxicity.
Google the name Edmond McNack and click the 2nd link. Unless stress caused his Sarcoidosis, there's something to all of this.
I would like to have an intelligent conversation discussing the toxicity issues related to Zidovudine (AZT) therapy. Look in pubmed and you will see countless journal studies about it. Unless you guys think everyone there was just stressing out too. AZT is a toxic medication, and people who are considering PEP need to be aware what they may be doing to their bodies.
It is not stress. It is toxicity.
Google the name Edmond McNack and click the 2nd link. Unless stress caused his Sarcoidosis, there's something to all of this.
I think the advise on anxiety is one to seriously consider. When I went on PEP over 2 years ago, I was so anxious that I practically became ill as a results. I had night sweats, cold chills and even believed I had rashes when in fact these were a few old spots.
The very fact that you are writing on this forum indicates a degree of anxiety. Bear this in mind but keep in touch with your doctor.
The very fact that you are writing on this forum indicates a degree of anxiety. Bear this in mind but keep in touch with your doctor.
Unfotunately, there really isn't much we can tell you, plus this is an HIV prevention forum, where we give risk assessments.
Really, your best bet is to continue working with your doctor, or get another assessment, from a new doctor. An ID doc would be the way to go, since they would have experience with these medications.
Have you had a lot of anxiety before the "symptoms" started? You'd be surprised at the impact severe and chronic anxiety can have on a person. Just something to think about.
Good luck to you!
Really, your best bet is to continue working with your doctor, or get another assessment, from a new doctor. An ID doc would be the way to go, since they would have experience with these medications.
Have you had a lot of anxiety before the "symptoms" started? You'd be surprised at the impact severe and chronic anxiety can have on a person. Just something to think about.
Good luck to you!
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