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Posted

So I have decided to go onto PREP. I have a prescription from my doctor ,except it is not offered in my country, Australia.

What are other people's experience in getting PREP from other countries. There are a couple chemists in India that supply this but not sure if this will be ok. That it is not really PREP.

What are other people's experience of this ?

Posted

From what I've heard this one is the real generic: https://www.inhousepharmacy.vu/p-610-tenvir-em.aspx . There are others around though, and some are cheaper.

 

The USA protocol is the one to follow: before you start taking the generic truvada, establish that you HIV-, by antigen testing rather than antibody testing, after a period of celibacy or strictly safer sex. Reason is that should you have acquired HIV recently it won't necessarily show on the test and by just taking the two drugs in truvada, you'd be be doing yourself more harm than good: except in isolated cases, such as salvage therapy, two drugs are not sufficient to treat HIV disease, especially in the seroconversion stage when viral levels end up soaring.

You also need to check for other STIs, as HIV can "ride on the back" of them (especially syphilis and hep C), and their presence can give HIV an extra chance at making itself at home in your body.

 

You need also to organise quarterly liver and kidney function tests: emtricitabine is processed by the liver and tenofovir by the kidneys. Any damage done by either drug needs to be addressed quickly before it becomes permanent. Admittedly HIV- guys deal with the side effects of truvada better than us poz guys, but it seems that HIV- have a higher incidence of the rare weird dreams side effect of emtricitabine than poz guys: A number of people on a facebook PrEP group have said that they experienced this side effect when I've had a number of doctors tell me it's impossible. Luckily my HIV doctor is a believer in the effect and agreed that emtricitabine was no longer suitable for me.

Tenofovir is processed by the kidney and can interfere with how your body processes vitamins and minerals, by causing damage to the tubules leading in and out of your kidneys. This effect is rare, but reversible (by stopping the drug). There's also a possibility of osteopenia (thinning bones) caused by your kidney sending calcium and vitamin D3 to your bladder rather than recycling them. Again, reversible by stopping the drug. I had the worst effect of tenofovir (Fanconi's syndrome) which has left me on mineral and vitamin supplements for life and damn near killed me.

Not trying to frighten you here: I'm telling you worst case scenarios and how to avoid them, namely liver and kidney functions tests every quarter, together with STI testing (full range) and HIV testing to make sure that you haven't been the one in a million that gets pozzed whilst on PrEP. (Medicine is never 100%) The vast majority of people (poz and neg) using truvada have no issues caused by it. I've been in treatment for HIV for 25 years and have a number of resistances and side-effect issues (as I put it in an interview with a Sunday paper recently "I fell out of the side effect tree and hit every branch on the way down") from taking the early drugs when we didn't know what the correct doses were or what sort of damage they might cause down the line: we just wanted to stay alive...

 

I don't know the figure of take-up for PrEP in the USA, but the guys I speak to are delighted by the loss of fear from their sex lives. My personal opinion is that using PrEP shows that you care about your health and, in a country that hasn't licensed it yet, you're prepared to go one hell of an extra distance to get it.

 

There are a number of organisations in Australia trying to get truvada authorised for PrEP for use in Australia. It might be worth contacting them (local HIV organisations would be your best starting point, else search for them on facebook - it does have its uses!) for further advice and suggestions. The best of luck in your efforts to get truvada - hope you're successful and that you explain how you did it, which would be way better than my cobbled together ideas!

Guest ff-whole
Posted

@bearbandit;

As I am a person living in a country/island where I can't get Prep... Maybe it would be nice if there is a thread which I could follow and stay up to date on getting certified safe Prep online...

The world is changing and conditions, products, etc. change fast.

Surely I'm not the only one.

Thanks...

Posted

@bearbandit;

As I am a person living in a country/island where I can't get Prep... Maybe it would be nice if there is a thread which I could follow and stay up to date on getting certified safe Prep online...

The world is changing and conditions, products, etc. change fast.

Surely I'm not the only one.

Thanks...

 

 

Actually I had thought someone in Europe or somewhere should pick this one up. Buy generic Truvada from online pharmacies, check the stuff in the lab to make sure it's the real thing, and 'certify' the pharmacies from time to time. This can't be official in any way, but still much better option than not having PrEP available at all, which seems the current status quo in Europe. If Europe/Australia can't make the finances work they should allow exit avenues for people at risk to get on PrEP somehow.

Posted

Actually I had thought someone in Europe or somewhere should pick this one up. Buy generic Truvada from online pharmacies, check the stuff in the lab to make sure it's the real thing, and 'certify' the pharmacies from time to time. This can't be official in any way, but still much better option than not having PrEP available at all, which seems the current status quo in Europe. If Europe/Australia can't make the finances work they should allow exit avenues for people at risk to get on PrEP somehow.

It's not a realistic idea. being on PrEP isn't just taking Truvada.  It's essential that quarterly blood work be done (not just to keep the Lab & Dr in business) HIV Status needs to be monitored, as well as Kidney, Liver & other functions.

Posted

I have had liver, kidney and STI tests and am clear. Haven't had sex in a few months through choice as I am wanting to start PREP a month or two before i go to Europe, see if I have any side effects then travel as one deviant slut 4 6 weeks :)

Thanks for all the replies they are great.

Posted (edited)

You should absolutely follow the United States Food and Drug Administration testing protocol, described by barebandit.

As for getting the medication, most countries give physicians the discretion to prescribe already-approved drugs (Truvada is approved for HIV treatment in most countries) for "off-label" uses. This is how Canadian patients are accessing PrEP, for example.

Whether the cost of an "off-label" prescription would be covered by a given public or private insurance plan is another matter.

Receiving personal shipments of prescription drugs from foreign countries is illegal in most jurisdictions. It is also risky. If counterfeit drugs have appeared in the pharmacy supply chain in developed countries like the United States, can you imagine what happens in India, Mexico, etc.?

Edited by fskn
Posted

I bow to your great knowledge, fskn, and thank you - as I always say I'm happy to be corrected if I've given misleading or wrong information...

 

Outside of the USA getting truvada as PrEP is difficult: for example the UK doesn't allow for off-label use of it, which leads to guys using other methods of getting hold of truvada. When we in the UK are aware of someone doing this (I'm talking about via the charity where I volunteer), we do our damnedest to make sure that they somehow get the relevant tests done: I've had differing replies from different hospitals as to whether they'd co-operate on the kidney and liver issues something I'm very hot on as I got the short straw in the tenofovir lottery). I'm hoping that the news from the START trial might also result in truvada being permitted for use as PrEP.

We also ahave the ridiculous situation in the UK that unused medicines are destroyed even if the pack is still sealed. Given the cost of ARVs this is patently ridiculous. However, there is an organisation that collects and illegally sends ARVs abroad, usually to Africa, but wherever they're needed. Having had my prescription changed just after I received a load of my previous prescription. Rather than see the drugs incinerated as UK law requires, I'm sending them off to be sent wherever...

Posted

Hi, bearbandit!

I'm sorry to hear about the PrEP situation in the UK. So there's an explicit bar to this off-label use of Truvada? How silly! Let's hope that PROUD and IPERGAY will convince the authorities to grant full approval in a few years' time. Still, I'm worried that there is a foolish emphasis on minimizing short-term cost. For example, I read of an NHS policy change that forced HIV patients to abandon the newer, brand-name, once-a-day extended-release formulation of Viramune for the older, twice-a-day formulation, by now a cheap generic.

Canada is different in that the provincial government health plans do not pay for prescription drugs. Off-label use has no short-term negative effect on government finances. (Only seniors and the poor receive a drug benefit, cf. Medicare and Medicaid in the US, and there is a program to pay for HIV treatment drugs, cf. Ryan White in the US. Funny how a country can be progressive as to covering medical services, but adopt US-style practices for prescriptions.)

I'm eager to hear about the situation in other countries, such as Australia...

I applaud you for supporting drug recycling. I met an amazing man years ago in San Francisco who was a humanist and led a drug recycling effort here. It seems safer to depend on local or even foreign donated drugs than on offshore pharmacies, as there is no financial motive in the former case.

  • Upvote 1
Posted

Thanks. Fskn for the info .

Australia has the same situation as UK. In fact besides US and Canada I know of no other countries that have Prep.

Hence my question. There are a few trials in Australia but there is nothing concrete.

So for the sake of my ultimate health I am thinking this way . It is not perfect but it is I believe the right thing to do.

Posted

I am in Australia. I have been on prep now for 45 days, not through any of the govt sponsored trials. My doctor provided me with a script which I forwarded to a group in Canada, the release form was filled by a chemist in Canada and the pills supplied via xxxxx in India. Pills arrived via Singapore about 10 days later (delayed by the Easter long weekend). 

I sent you a message scottyrim regarding this. 

  • Upvote 1
Guest ff-whole
Posted

What are the expiry dates on such medicines average @bearbandit...keeping them dry and refridgerated, would they last more then a year?

I too apploud your recycling of not expired unopened boxes to people who really need it instead of destroying good medicines. If you are not vigorously stating that other tests need to be done regularly, I wouldn't mind to have a box, so that when I go to Berlin, I can be protected... But you have to take it months ahead, as I understand...

Myself I'm not so trustful of the FDA... I have heard enough stories of corruption, example the Monsanto stuff. But hey, who am I...

Posted (edited)

...keeping them...refridgerated, would they last more then a year?

I too apploud your recycling of not expired unopened boxes to people who really need it instead of destroying good medicines. If you are not vigorously stating that other tests need to be done regularly, I wouldn't mind to have a box, so that when I go to Berlin, I can be protected... But you have to take it months ahead, as I understand...

Myself I'm not so trustful of the FDA... I have heard enough stories of corruption, example the Monsanto stuff...

A few points...

The monograph included with Truvada says that it is to be stored at room temperature.

The FDA prescribing guidelines for Truvada for PrEP are based on rigorous clinical trials. There's no conspiracy involved. The medication causes serious kidney and bone problems for a very small fraction of patients, hence the need for quarterly monitoring. As bearbandit explained, the two drugs in Truvada are strong enough to prevent HIV but not -- without a third drug -- to treat HIV, hence the need for initial and quarterly HIV testing.

Re: build up, I personally heard Dr. Robert Grant, who has participated in much of the US-based research on PrEP, suggest at least a week. It's certainly not a question of months. The IPERGAY study is currently reporting a high degree of success with episodic dosing: 2 pills 2 to 24 hours before sex, then 1 pill every 24 hours until 1 day after the last sexual contact.

Re: prescription rules, there seems to be a misunderstanding here, from countries like the UK and Australia where government pays for drugs. Prescription and payment are separate questions. If your Australian doctor has written you a prescription for Truvada on his or her prescription pad, then you do have an "off-label" prescription. There is nothing forbidding this in most countries. You can bring such a prescription to your usual pharmacy and have it filled locally, just as if you were an HIV-positive patient using Truvada. The issue is who will pay, given that you wish to use the drug for a purpose other than HIV treatment, the purpose for which it is approved (labeled) in Australia.

It does look as if personal prescription importation is legal in Australia, unlike in the US, though the usual cautions about online pharmacies apply.

http://hivfoundation.org.au/sites/default/files/PrEP%20Access%20Fact%20Sheet%20Feb%202015_0.pdf

Edited by fskn

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