Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

[fingers2022]

Tenofovir is helping me alot. No side effects at all or die off type stuff etc. Liver and kidney function trsts have been fine.

Anecdotal...f***ing useful...haha sounds like a RHCP number.

 

[fingers2022]

(Sorry with ongoing forum upheaval I have now deleted most of my post here. I will say however that Tenofovir helped 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.

All I have to say is....f*** me!!!!
I read the whole post btw...thank you, thank you...definitely....

 

[Jesse2233]

I have added a poll as others are reporting benefit from tenofovir in this thread

 

[Jesse2233]

Tenofovir is helping me alot. No side effects at all or die off type stuff etc. Liver and kidney function trsts have been fine.

Heapsreal what kind of benefits have you noticed from tenofovir?

 

[JES]

Ahem, does that equate to fuck all risk then compared with possible benefits?

I don't think anyone here is taking the approach of "fuck all risk". In fact taking any medication is a risk versus reward judgement call. Currently most promising looking drugs for CFS/ME such as Rituximab have serious and potentially lethal side effects. Still, it may well be worth taking them for an individual.

Anecdotal...fucking useful...haha sounds like a RHCP number.

What else other than anecdotal experiences would you expect to find here on a drug that hasn't been clinically tested for CFS/ME?

 

[Sandman00747]

@Sandman00747 can you elaborate on any of this?

I don't really have much specific information on this. I know of a group of people in California (12-15 people) that are all taking the above doses of those two drugs. They are people that are simply fed up with the lack of progress, sought advice from some research doc, and someone in the group I believe has good and reasonably affordable access to

the drugs somehow. Trouble is most of them have started taking the ARV's at many different time intervals and in personalized smaller doses at startup so results are not synchronized whatsoever, but I was told 2 or 3 were feeling great and about a half dozen were feeling significantly better. If I hear more I will post about any results.

 

[heapsreal]

Heapsreal what kind of benefits have you noticed from tenofovir?

Its hard to quantify. If im feeling run down i can recover with a good nights sleep, so pem is greatly reduced compared to in the past. Function more consistently at an 8 or 9 out of 10. I wouldnt say recovered but i have stopped them a few times and progressively gotten worse and improved once back on them.

Ive heard 50% of cfsers improve on arvs and 50% dont. Its possible cfs is several diseases in one.

 

[Jesse2233]

Ive heard 50% of cfsers improve on arvs and 50% dont. Its possible cfs is several diseases in one.

If true 50% is certainly worth a trial run

I wonder if the Rituximab non-responders would benefit

 

[fingers2022]

If true 50% is certainly worth a trial run

I wonder if the Rituximab non-responders would benefit

Agree, and good point/question re Ritux.

 

[fingers2022]

I don't think anyone here is taking the approach of "fuck all risk". In fact taking any medication is a risk versus reward judgement call. Currently most promising looking drugs for CFS/ME such as Rituximab have serious and potentially lethal side effects. Still, it may well be worth taking them for an individual.



What else other than anecdotal experiences would you expect to find here on a drug that hasn't been clinically tested for CFS/ME?

Folk take all kinds of meds without questioning risk/side-effects. Often when they'd be better off looking at lifestyle changes if that's possible for them. I feel that the risk of ARV's is being a tad over-egged.

Other than anecdotal experiences, I'd expect to hear thoughts about ways forward. Open minds that there might be something in this and how can we as a community leverage or create some action, such as some small scale trials for starters. As a sufferer for 26+ years, and having tried several approaches without any success, the retroviral theory is the only one I can see any promise in...at least until it gets properly disproven or otherwise.

 

[fingers2022]

I am not ruling out the possibility of a retrovirus infection, given Prof Lipkin's initial findings of retroviral genetic signatures in 85% of ME/CFS patients.

Can you expand on that?
Is a retroviral genetic signature anything unusual?
My (weak/simple) understanding is that RVs have played a part in human evolution, so RV genetic signatures might be common...?

 

[Jenny]

Hi Jenny
We are all different, respond differently and have different levels of (in)tolerance to things.
Sure, we can go on the experience of others...for example most healthy people tolerate alcohol, and this has been tested for millennia. Some react badly to it...caffeine similar. These ARV's have been well tested for 30 years or so, less toxic now, fewer and less severe side effects. I 'believe' that the only way we will know is to each individually try them. I've been doing so for just over 3 months now. Honestly, some improvement I think but not massive - I need to come off at some point to test that, as we do forget how bad we were as we recover. I've been very active whilst on them, and I drink tons of water and have a healthy diet - I think these things are likely to be protective, although we ME sufferers do of course need to balance the activity and need to rest lots.

Here's a top tip from a layman: establish your resting heart rate first thing in the morning, say 10 minutes after waking, but before getting out of bed (use a device such as a blood pressure monitor or a HRM). For a week or two, see how your RHR varies - it will vary depending on your recovery status from previous day, whether you have an active infection, psychological stress etc. It gets lower as we get aerobically fitter, i.e. our heart muscle gets stronger therefore stroke volume increases and heart needs to beat less often at rest to get the same blood volume around. Of course we don't get fitter unless we physically stress our system then allow it to adapt by resting.

Then, if you feel well enough, and in consultation with doc, try ARVs as directed. Monitor your RHR. Mine has been consistently lower on ARVs - a good sign I think, and objective too. RHR is a very good indicator of cardiovascular disease risk (evidence-based ). If the ARV's are making you worse, my hunch (no research evidence, but discuss with doc) is that this could be reflected by an increased RHR.

Thanks for this fingers. I hope you get more improvement. My heart rate is quite variable, but doesn't seem to correlate with how I'll I'm feeling.

 

[Jenny]

@Hip I think some are improving but I don't know about the time scale, or what happened when they discontinued. It was only a brief conversation. We will know more in a few months.

 

[fingers2022]

Thanks for this fingers. I hope you get more improvement. My heart rate is quite variable, but doesn't seem to correlate with how I'll I'm feeling.

I'm surprised that there isn't correlation. I find that I can tell what my heart rate is before I monitor it. It would be interesting for you to keep a log say for 2 weeks - RHR vs 'perceived wellness' (1-10), record the pw first! Then tell me again no correlation ;-)

 

[fingers2022]

I have added a poll as others are reporting benefit from tenofovir in this thread

Nice one.
Interesting poll results so far. In another discussion here about ART, someone commented that most folk on this forum had tried everything
100% of experimenters reporting no harm too
All anecdotal, and small sample sizes, but we seem to have a trend - as Mark Twain said 'I've had a lot of trouble in my life, and none of it ever happened' (or something like that).

 

[Keela Too]

Okay so I'm the one who ticked much improved.

I know up-thread I deleted my commentary (this forum upheaval business is disorientating) .. however my commentary is also in another thread which I can't actually delete now, so here's my full comment, originally posted in this thread: http://forums.phoenixrising.me/index.php?threads/pem-and-pacing.54664/#post-913387

**
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.

 

[fingers2022]

DIY ART trial (aka FUCK 'EM = Fast utilitarian clinical knowledge exploring ME)
UK trial for PREP https://www.prepimpacttrial.org.uk is getting up and running.
I propose that as many ME sufferers as possible sign-up. Anyone who signs up will be monitored for kidney function etc.
I'll volunteer to gather and analyse ME participant data - PM me if you're interested.
Particularly interested in contact from anyone with research experience who might like to help out.

 

[Hip]

@Keela Too, I am glad you reposted your experience with tenofovir, as anecdotal accounts like this are good to read. From your description, it sounds like tenofovir has transformed you from severe ME/CFS (bedbound or couch-bound for most of the day) to something more like moderate ME/CFS (see the ME/CFS scale of mild, moderate and severe). I tend to regard any treatment that can move patients up one level on this scale as a major response.

I feel that the risk of ARV's is being a tad over-egged.

The risks are always important to point out, in part so that people can make an informed decision, and in part so that they can ensure they minimize the risk. So in the case of the kidney concerns, it is important to make people aware of the need for regular kidney function tests when taking tenofovir.

This is the sort of info that anyone taking tenofovir should be pointing out when they post on forums. Pointing out the potential side effects is not the same as implying that you should not take the drug.

Can you expand on that?
Is a retroviral genetic signature anything unusual?
My (weak/simple) understanding is that RVs have played a part in human evolution, so RV genetic signatures might be common...?

I don't know much about it: the only info we have comes from this article:

They also found retroviruses in 85% of the sample pools. However, Lipkin expressed caution:

“It is very difficult at this point to know whether or not this is clinically significant. And given the previous experience with retroviruses in Chronic Fatigue, I am going to be very clear in telling you – although I am reporting this at present – in Professor Montoya’s samples neither he nor we have concluded that there is a relationship to disease …if I were to place bets and speculate, I would say that this is not going to pan out.”

In this study, Lipkin used a new technique called high-throughput sequencing, which detects pathogens by their genetic signature, just like forensics identifies criminals by their DNA.

It's true that the human genome is littered with the remains of ancient retroviral infections our ancestors caught millennia ago — these are called human endogenous retroviruses (HERVs), endogenous meaning that they are part of us. Like any retrovirus, these HERVs have inserted their genes into ours, so that they now part of the human genome that you are born with. And these HERVs can sometimes come to partially back to life, in that they can start manufacturing viral proteins (eg, the building blocks of a viral particle), like a normal viral infection does.

But I would not have thought that Lipkin's high-throughput sequencing would have picked up a HERV infection and mistaken it for an exogenous retrovirus, because the genetic signatures of these HERVs are well studied. Though I am not entirely sure about this.

 

[Hip]

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.

I find it particularly interesting and encouraging that tenofovir appeared to create a permanent improvement in your health (at least so far), that has maintained itself for around a year.

It is often the case with antiviral / immunomodulator treatments for ME/CFS that you slowly lose the gains once you stop taking the drugs. For example, when Dr John Chia used interferon to treat enterovirus infection-linked ME/CFS, after a 3 month course of interferon, some patients went into full remission, but then most would relapse back into ME/CFS after a a few months (although some lasted as much as 14 months before relapsing). Ref: 1

 

[Jesse2233]

@Hip I agree, I wonder what if anything we can posit about this...

Perhaps viral RNA can be cleared from a certain percentage of tissue thus reducing systemic inflammation

Or perhaps immunmodulary properties of the drug affect a permanent shift in cytokine balance