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Truvada (Prep) HIV- Tingling/Numbness Neuropathy?

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rmbrworstbehavior:
Greetings,

I have an appt scheduled w/ my primary care physician who is also an infectious disease expert, but I want input from the community as well.

I am HIV negative and take Truvada for Prep.  I've had no big side effects, except for the first 3 weeks I had trouble sleeping and really crazy dreams, but that is long gone now that I've been on it for so long.

I've been taking it for 8 months, but the past couple of weeks my toes are tingling and numb.  I went to an orthopedic doctor (for numbness in my right leg, which he says is a different issue), and he told me he suspects it's the Truvada I am taking and to go back to my infectious disease doctor and talk to him about it.

So the question is simple, do any of you experience these side effects on Truvada? 

I would hate to stop taking it, but if I have to I will.

If it is due to Truvada, any experience on how long it will take for the numbness to go away or will it ever?

Any input is appreciated.

Thank you.

Jeff G:
I think you have a good sound plan on consulting a doctor who specializes in prescribing these meds. Many of us who have been on meds for years have neuropathy but I would not go as far as suggest a person who’s only been on meds 8 months would be suffering from that condition . Please let us know what your doctor says and by the way, welcome to the forum !

Andy Velez:
RMB, overall the reports about problems with side effects from Truvada have been minimal and fleeting. Like Jeff I'd be interested to hear what your doctor has to say about the neuropathy.

rmbrworstbehavior:
My Doctor said that Truvada can cause neuropathy but it's rare.  He ordered a lot of different tests to rule out everything else. 

My glucose is normal as well as my kidney function which was his main concern, so at the moment it seems that Truvada may be the culprit.  I haven't finished all tests yet, but once I do I have to go back to him for a follow up.

If it is Truvada he states that he would much prefer I stay on Truvada and that he has ways to combat the peripheral tingling and numbness instead of coming off the drug.  However I suppose it's my choice.

I would like to stay on it too, but I'm afraid at what cost?  I suppose if there's pills to help any neuropathy it's okay, but I'm young and don't want to be on too many medications.

Thanks for the input.  I'll post any follow up on here.

For the moment we aren't 100% on what's causing it but he confirmed it very well could be Truvada, however he also did not seem very concerned with it causing any kind of irreversible damage. 

I'll keep going with it and listen to my body and hopefully figure it out soon.

Jeff G:
I would not stay on any drug that causes PN … its not a reversible condition and can get much worse over time. I have med related PN and have to take narcotics for the pain and will have too take them for life. There are no treatments to make PN better but there are some drugs to treat the symptoms and those drugs can have side effects too.

You should not let what I tell you scare you at this point but if your doctor finds the Truvada is the cause for your PN and tells you he thinks you should continue with the drug I would get a third opinion … my opinion is no way in hell I would take a drug long term that I could do without if it caused PN .

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