Trying the antiretroviral drug Tenofovir

[chillier]

TLDR: considering taking an antiviral taken routinely as PrEP, what do you think about tenofovir for ME, particularly its safety profile?

I am considering trying the antiretroviral drug Tenofovir. In the UK they would never prescribe this for ME of course, but you can also get the drug without a prescription in the form of Pre-Exposure Prophylaxis for people at risk of contracting HIV.

It comes as Emtricitabine/ tenofovir disoproxil fumarate or Emtricitabine/ tenofovir alafenamide. It is cheap relatively speaking ~ £30 for few months or so.

There is no evidence base for taking this drug in ME. Besides retroviruses, there is some limited evidence of tenofovir being effective against EBV in vitro. There is anecdotal evidence of tenofovir helping in some people and being prescribed for ME by some clinicians at various points in the proprietary form of Viread - which is the same thing as far as I can tell but without Emtricitabine.

The side effects and incidences appear to be mild - headaches (7%), stomach pain (4%), and weight loss (3%) according to the Truvada website. There is a possible major side effect of liver and kidney problems, which requires regular tests kidney and liver function - which I would request from my GP.

This person suggests splitting the pills up into small fractions and increasing the dose over time to reduce side effects. I don't like this idea because it is not established clinical use of this drug, and I don't know whether that might create a favourable environment for retroviruses in the body akin to antibiotic misuse.

So tenofovir may be unlikely to help, but the question is whether the risk of taking it is sufficiently low to be worth trying it anyway. I would love to hear your opinions, with the obvious disclaimer that my decisions are my own and am not taking your thoughts as actual medical advice.

@Keela Too I've seen you've had some success with it, have you written about your experience anywhere?

 

[Keela Too]

Hi Chillier,

Yes I took Tenofovir. It was not cheap at the time - I think about £300 a month! I was on it for a year. Perhaps it is easier to source now at a better price?

Since that year, I have maintained the ground I gained, but have not been able to get any fitter. That said, I am now much more adept at working around my physical limitations, and so it may appear to others that I am remarkably “well” and “improving”.

Back in 2015, I started Tenofovir at a time that my health was on an uncontrollable ratchetting downwards trajectory. It was a scary place, and I literally decided I would try anything!

My ME level now is such that I have a good quality of life (even if it is one that is very much planned around my limitations), so I’m not sure that I would now risk another treatment.

At the time I took it, the understanding was that although there could be adverse effects, that none would be long-term and that stopping the drug would mean a return to pre-treatment health. Sadly, I heard on the grapevine that some people who took the drug after me, lost ground that they did not regain on halting the drug. It’s not a nice drug. I was happy to stop taking it.

For this reason, I have been very circumspect about sharing my experience, and always add the disclaimer that I feel I was quite simply lucky!!

There is a lot to consider. You are asking the right questions.

I’ve just done a search, and found that I wrote this in 2017 (it was on another forum, so I’ve taken the liberty of just cutting and pasting my own words here again):

“Okay this goes with a disclaimer:
I am not medically qualified. Make of this what you will, but the following account is not medical advice.
I am not recommending any form of treatment, only telling my story as it happened to me.
I am just one person and, in terms of progressing knowledge, this story is only an anecdote.

So, I was on Viread, also known as Tenofovir for a year starting in late 2015. (I think this is the first time I've actually said this out loud in a public space, although there are probably a good few folk who know this already.)

Taking Viread requires regular kidney function tests, so needs to be medically supervised. I understand it has not yet undergone any formal trials in the context of ME, but that it has been approved for use in AIDS.

I have now been off Viread for almost a year, and with a few ups and downs, I have pretty much held the gains I achieved during that treatment year.

It took about 4 months on Viread for any changes to become apparent, but then I had a rapid increase in ability over a couple of weeks followed by much slower gains with some bumps along the way until the 10 month point. My physical ability peaked at about 10 months after which I had some decline. That decline appeared to be halted when I stopped the drug at 12 months.

I know of some others that Viread has worked for, but also those for whom it has given no benefit whatsoever. I did not combine it with any other drug, although from about 6 months in I took sodium bicarbonate to counter acid accumulation in my muscles.

Viread has not restored me to my previous level of health, but I now have much greater flexibility in what I can do, mostly due to a greatly reduced PEM response (although that has not gone entirely). Nor has my aerobic capacity returned to previous levels. I can now walk a reasonable amount, eg when shopping, but only by taking it slowly. No stomping along in a constant hurry as used to be my norm.

I should say I was horizontal most of everyday prior to treatment, and was slowly declining year on year - despite my efforts to pace carefully. For the 3 years prior to treatment starting, I was only able to leave the house using a mobility scooter, or wheelchair. My illness onset was in early 2012.

Why it helped me and not others is a mystery. I was one of the lucky ones it seems. I was also fortunate to have the means to pay for this treatment privately.

I know folk might think I should be actively promoting Viread as a treatment, but it's not so simple: I had some reactions along the way - such as increased migraine episodes - and I know others who had bad responses too. Although it feels like a miracle to me, it is not a miracle cure for all with ME.

Earlier this year I wrote a blogpost about my improvements - It was in the context of NOT needing any form of graded exercise therapy in order to take up my new found energy levels:

http://sallyjustme.blogspot.co.uk/2017/02/get-out.html

I hope that helps a bit.”

 

[Keela Too]

PS
I should add that the migraines I got while taking Tenofovir were significant and a limitation in themselves.

I had been told not to take ibuprofen or paracetamol whilst on Tenofovir, as these are also difficult for the kidneys etc to process so I ended up relying on another wafer/melt (that I got on prescription) and as I was taking these so often, my own doctor wanted me to go on another drug regularly for the migraines. Luckily I avoided that.

Once I stopped Tenofovir, my migraines abated back to my more normal level of them being an infrequent inconvenience.

I should add, that I have had migraines since childhood, and that ME did not seem to alter their frequency or severity. Tenofovir however did, and they were both more severe, and much more frequent.

 

[chillier]

@Keela Too Thankyou I really appreciate your comprehensive reply, there's lots to think about. I'm in a way surprised about the nastiness of the side effects you experienced and mentioned others had. As I understand it PrEP is taken long term by many people and most of them don't have side effects at all, but then again they are fit and healthy and probably young. The quantity also appears to be the same between Viread and what is currently in PrEP (300mg Tenofovir Disoproxil Fumarate).

Your experience suggests it's riskier than I hoped but I'm very glad you feel better than you did.

 

[RedFox]

I am taking Truvada for its intended usage to prevent HIV. I'm taking it as 2-1-1 PrEP, which fits with my lifestyle and should minimize side effects. I did a dry run when I got it, taking it for 3 days as explained, and it had no apparent affect on my ME symptoms. It caused mild, sporadic side effects like a bad taste in my mouth and an upset stomach.