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Posted

Hi,

 

I've been on Prep for two years, never had any issues.

 

However, for the last 4 weeks Ive been suffereing with permanent 'numbness'/pins&needles down one leg.  I spoke to the doctor at the trial, he said it can't possibly be Truvada, because I've been tolerating it for two years and also because Its 'newer' type of HIV medication that does not cause peripheral neuropathy.

 

 

I've read extensivley around, and most of the article seem to confirm this (I think). For example;

 

http://www.thebody.com/content/art6077.html

'Several HIV drugs can cause PN. The most important are the "d" drugs; ddI (didanosine, Videx), and d4T(stavudine, Zerit). Hydroxyurea, which is sometimes combined with antiretroviral drugs, increases the risk of PN.

Zidovudine (Retrovir), abacavir, non-nucleoside reverse transcriptase inhibitors (NNRTIs), and protease inhibitors do not appear to cause PN.'

 

However, I've read a couple of articles suggesting truvada could.  I appreciate that nothing is 100% but was wondering if anyone else on Truvada has experienced the same ? 

 

I'm concerned  because I've read that if it is due to medication, the medication needs to stopped asap, to avoid it becoming permanent.

 

If I do decide to take a prep-holiday,  I need to decide how long after expsoure, should I stop. To be on the extra safe side, I guess four weeks after last having unsafe sex  (same as pep I guess)

Posted

When I first started taking prep I experienced "pins & needles" in my feet, sometimes just a dull numbness. I discussed this with the Consultant who assures me that it isn't the truvada, we also agreed that I would take a break to see if the symptoms dissipated. I only went off meds for a few days but the symptoms remained. I also changed my shoes & socks.

In any event, the symptoms soon disappeared and I restarted truvada. I've not had issues since and the Consultant asked me about it last month. He still maintains that it wasn't the truvada.

J

Posted

Has any of you guys experienced knee pain or or a feeling of like heart burn, or slight pain in the chest are as a side effect? Ive been on Prep since 3/31 and have noticed these issues; im just not sure if they occur only when i take the pill on an almost empty stomach of a full meal

Posted

I had some stomach issues when I first started PrEP, but they went away after a few weeks; mostly just a stomach ache and some acid reflux  Still can't say for certain that PrEP was the cause since I've always had a sensitive stomach which doesn't always want to cooperate.

Posted

This is the only place I've encountered numbness/pins and needles as a side effect. In instances where a drug has caused a problem that has an effect (real life example: the old dose of ritonavir caused diabetes after a long enough time and peripheral neuropathy can be a complication of diabetes), you can ascribe pretty much any effect to any drug.

My regime when taking a new drug is to scan the side effects but of the leaflet briefly, concentrating on the extreme stuff just in case. Then I take the drug for a month without going over any of the leaflet again. After a month I go back to the leaflet and realise that none of those effects have happened without explanation (such as diarrhoea after eating a lot of beef: a personal oddity) and carry on for months two and three. Then, when it's more a question of intellectual curiosity do I go to the leaflet and read it all (and almost always pick up another three month's worth.

One of the problems with starting PrEP is that you're in good health. You're not used to taking pills and expects to be the 1 in 1000. Sorry, but even common side effects (minor irritations) only happen to 1in10 people. Take the pills, get laid and have fun!

  • Upvote 1
  • 2 weeks later...
Posted

Very few people experience side effects for more than a few weeks. Anything beyond that, you should definitely discuss with your doctor.

 

A good place to compare notes with other PrEP users about their experiences is the PrEP Facts Facebook group, with 14,000 members. (It's a closed group -- your other Facebook friends won't see your activity). www.facebook.com/groups/PrEPFacts

Posted

I've decided to take Prep holiday just to make sure that it isnt causing peripheral neuropathy ( I highly doubt it is). 

 

I'm not sure how long I should stay off prep, just to make sure its out of my system.

 

The doctor from the clinic mentioned an entire month, just to be on the extra sure side - does that sound about right - Or would a couple of weeks be enough?

 

Also, when I start Prep again - 7 days would give me 'full protection'?  The CDC website recommedns 7 days for recptive anal (me) and 14 days for other

  • 1 month later...
Posted

I'm bumping this topic to the top of the page as I have a further question on long term side effects.

I've been on prep for almost 2 years now.

I used to enjoy alcohol allot more but lately have gone off drinking altogether. I say lately but looking back it has been over the last 2 years that my taste for alcohol has significantly declined.

I used to enjoy a drink, and whilst I don't believe my drinking ever reached a level where it was out of control I certainly had a greater enthusiasm for alcoholic drink, and the fun I would get up to once I had a few...

Over the last year I've also worked in the Middle East, which doesn't exactly lend itself to a pub/drinking culture either, so there have certainly been changes to my usual routine.

My question is therefore whether anyone else has had a similar experience with alcohol usage and taking prep?

J

  • 2 weeks later...
Posted

once I first started taking prep I experienced "pins & needles" in my toes, from time to time just a dull numbness. i mentioned this with the representative who assures me that it isn't always the truvada, we additionally agreed that i'd take a destroy to look if the signs dissipated. I simplest went off meds for some days but the symptoms remained. I additionally changed my footwear & socks.

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