Truvada (Prep) HIV- Tingling/Numbness Neuropathy?

[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 .

[rmbrworstbehavior]

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 .

Thanks for the advice.  I kind of felt it was odd he would continue if it was due to the medication.  I don't want to do any irreversible damage.

If it's indeed the Truvada then I might go off it or as you said seek another opinion.

Sorry to hear about your PN, sending you positive energy and wishing u well.

[Jeff G]

You are welcome . Please let us know what you find out.

[Miss Philicia]

Why don't you do the simplest thing and go off Prep for a while and see if it subsides?

[rmbrworstbehavior]

Why don't you do the simplest thing and go off Prep for a while and see if it subsides?

I want to stay on the Truvada until all the tests are done.  Then I will probably stop taking it and see if the numbness subsides.  Meaning I don't want to skew any test results.  I want them to see the lab and test work while I'm on it.

But yes I will probably stop taking it in the near future. 

For a little mini update, some labs came back and my vitamin b12 test is borderline deficient, but not quite.  I need to discuss this with my doctor as he mentioned anemia or b12 deficiency could be a factor.  I've felt I've had mal absorption issues for many years so this may be an indicator of that.

I'll let u guys know any updates.  Thanks for your support!

[rmbrworstbehavior]

Wanted to give an update.

I went off the Truvada for one month, and not really sure I feel a huge reduction in numbness.  I have an appointment coming up with a Neuro doctor, so hopefully I can gain some insight into what is happening.

The numbness comes and goes, and may be a little less off the Truvada, but at this point I'm really not sure. 

The only thing we've found so far, is that my B12 levels are on the low end of normal . . . but still in normal range.  That's the only thing at this point I can think of besides the Truvada causing numbness, or it may be (hopefully not) that Truvada has already caused permanent damage that wont repair itself.

I'll update again if anybody is interested.

[Joe K]

Keep working with your doctor.  It is highly unlikely that Truvada would cause any permanent damage when you took it for such a short time.

Joe

[rmbrworstbehavior]

Hello everyone,

Just so that this thread is completed in case anybody uses it as reference, I want to let you all know the final verdict.

The numbness/pain was not attributed to Truvada.  I saw a neurologist who said my b12 levels are not normal for my age, and I started getting shots and supplements.  My numbness has subsided.

I appreciate everyone's responses and help.