My Experience on AntiRetroVirals

[Hip]

Interesting that they are starting patients on all 4 at once. I'd thought they'd try 1 at a time.

It may be just a proof of concept clinical trial, just to see it anti-retrovirals have any impact at all. If they do have an impact, then perhaps later they might try to figure out which drugs work best. That's my guess.

 

[ScottTriGuy]

Hopefully the side effects of each of them aren't too great - otherwise cumulatively it can be a challenge.

 

[heapsreal]

Isentress is expensive but i would have a crack at it if i could afford it, for sure.

 

[ScottTriGuy]

@heapsreal

I'm going to ask my GP this morning if I can start on Isentress - I just want to add it to my existing ARVs, I don't want to drop any.

Isentress in on the Canadian formulary for HIV infection, so I'm not getting it 'off label', so I won't have to pay out of pocket.

 

[Ellkaye]

Clearing any coinfections first (successfully) if any are present appears to increase the chance of these meds working the first,second,or even third time around against the foreign invader (depending on how successful/lucky you ve been at clearing coinfections).Horrible for the patients who get too weak to eat..They'd need good immune support/multivitamins/polynutrients beforehand and during.Guess it depends on how long you've been sick/when you caught the RV and what else has infiltrated/swamped your immune system/or been ignited in it, and how far you succeed in clearing the way from all that before delivering these meds.I personally take a very complete panel of multivitamins too to try to get the most bioavailability out of the meds and because these meds are strong so important to be as reinforced as possible.The lucky ones are the less ill with less coinfections I guess.I would like to think there is hope for everyone and that the severe can have their coinfections cleaned up and immune systems prepared (with immune support) for similar effective treatments against the foreign RV.The problem is how do you treat patients and prepare them when they are so sick to tolerate such strong meds..but I see there are many molecules.Very specialized stuff all this.I think the HIV and cancer experts know best about these treatments and strategies,reduced doses to prevent overlapping 'treatment fatigue' for example,initiating lower doses perhaps.I'm far from an expert.Everyone is diifferent and needs medical surveillance and monitoring.

I think this is where all the funding and research must go. There is a duty on doctors and researchers to quickly realize this with their ears open and do something to really help people.

I started with Viread. Had to add the Raltegravir after. And it has now stabilized with my taking both of them but on a reduced regimen because full dose every day was too much and created treatment fatigue.(I take the full doses of both but not every day as explained in my first post). Treatment fatigue (being overmedicated) has thus since subsided since I've hit the right perfect dose as mentionned in my first post but every case is complicated and different but interesting to gather info available while moving on.
If I was to start again at the beginning 18 months ago then would I start with both on my current reduced regimen? No idea. No idea if the benefit now on the reduced regimen was helped by taking full dose Viread more or less daily the first year (but I had to go off it even back then sometimes occasionally) with my adding the Raltegravir to it later on(which I could not tolerate daily). Maybe it could have been effective sooner like that too right from the very start(on my current reduced regimen I mean)..I am not an expert. Just reporting my experience and what I learned and how I adapted and reacted along the way, and asking myself the questions from my experience. Just like the HIV patients who say they are overmedicated I guess.

If for arguments sake we say that a month has 28 days then :
my current regimen is 22/28 days Viread and 8/28 days Raltegravir. Both at the full dose but reduced in terms of days.
And the vital multivitamins too to help buffer any side effects/toxicity.


And the fiddles of the PACE band play on...

 

[ScottTriGuy]

@Ellkaye

Thanks for sharing your experience.

Interesting that you do not take your ARVs every day.

For HIV infection, daily adherence is crucial - otherwise the ARVs can become ineffective as the HIV develops resistance when the level of ARVs are lower.

Perhaps daily adherence is not as crucial for other retroviruses - or perhaps your 75% adherence is enough to keep the retrovirus from developing resistance.

 

[Ellkaye]

From a neighbouring country:

http://www.ncbi.nlm.nih.gov/pubmed/25833895

Four days a week or less on appropriate anti-HIV drug combinations provided long-term optimal maintenance in 94 patients: the ICCARRE project.

Different in different people perhaps I really do not know but I think you're right Scott and to avoid overmedication fatigue..

 

[ScottTriGuy]

Very interesting. I'm assuming the newer ARVs stay at an effective level in the system longer - it would appear that they've have almost doubled the duration, thereby decreasing by 40% the amount of meds taken - that should make it easier on the body too.

Other thing, in HIV infection, triple therapy is the norm - starting on 1 ARV quickly leads to resistance.

 

[Rrrr]

Got ME/CFS after MMR vaccine 20 years ago as a teenager.
Was at 50%/5 on the Bell/Lerner scales prior to treatments.
Currently treated with continuous Viread 245 mg daily with a few days off fortnightly and 800 mg Raltegravir pulsed in fortnightly too. Multivitamins only other thing I take.
Am now at 95%/9.5 on the Bell/Lerner scales. so that is is 45%/4.5 increase on those scales.
All done under strictest medical suveillance. Everyone is different but that's my story. I am not saying this is a model to follow but just reporting my case. Different people need different ARV's. Not the same in everyone...

My observation is that the band is playing on and that the 5 million pound fiddle that is the Pace study is the most expensive instrument in the band it would seem.....

HIV negative. All other tests more or less normal/within normal range/intermittently abnormal/normal so not significant.

That's All Folks

@Ellkaye

This is so wonderful to read. Thank you for posting!! Please keep us updated.

Also, what sort of doctor did you see who gave you antiretrovirals? I went to 4 and none would, as I'm not HIV+ (like you are not).

 

[Hip]

If I was to start again at the beginning 18 months

So it took 18 months on these anti-retrovirals to get to the level of health you are at now?

 

[Ellkaye]

To learn how best to use them yes.
Viread had an immediate effect but then wore off unless I stopped and restarted intermittently which is why I added Raltegravir. But at full dose on both every day I was overmedicated. So now take the full doses of both but on fewer days and it's perfect. It leaves my body time to recover and build up alone off the meds too and this seems to make the meds more effective continually over time in my case. Wonder if I should ve done that from the very beginning.Good immune support multivitamins as in cancer and other nasty diseases is essential as these are strong meds.


2011 was the year the Pace Trial was published. It's been out for four years now. But those approaches have been followed by dr's for a couple of decades. Not even the most expensive Retrovirus study with all the smart technology would cost that much I'd imagine.Observationally,purely observationally and without fully understanding the science,the events and timeline chronology since 2009 are just bizarre.

 

[heapsreal]

Anyone got any good online sources for isentress ?

Mightbe a good combo with famvir and both drugs are very safe.

 

[Ellkaye]

Famvir had no effect in me even though hhv6+ by pcr.
All meds I take without exception are strictly given by physicians with proper medical surveillance. Goes without saying....
Doctors just need educating and convincing,guts and two very solid balls.

 

[jess100]

I'm happy for you and thank you for posting this information. I feel that if posting helps at least one person then it's worth saying what worked.

 

[Hip]

Viread had an immediate effect but then wore off unless I stopped and restarted intermittently

Interestingly enough, Dr Jamie Deckoff-Jones also found that tenofovir (Viread) would have a relatively immediate beneficial effect on her ME/CFS symptoms, and she observed she felt worse a few days after stopping tenofovir (see her quote in this post).

This suggests that many of the benefits of tenofovir (Viread) do not come from its antiviral action (because antiviral drugs typically take weeks or months before any appreciable change in viral load is observed). Rather, many benefits of tenofovir for ME/CFS may come from its ability to reduce inflammation or modulate the immune system.

This article says that both tenofovir (Viread) and valganciclovir (Valcyte) reduce inflammation:

Tenofovir was found to decrease production of the cytokines IL-8 and CCL3 (also known as macrophage inflammatory protein-1-alfa) by monocytes after stimulation with TLR ligands, TNF-alfa, or live pathogens.

Zidovudine, in contrast, increased production.

Tenofovir also decreased CCL3 levels in human PBMCs. Tenofovir strongly reduced expression of IL-10, but increased levels of IL-12. Zidovudine did not affect either IL-10 or IL-12 levels.

As you may know, ME/CFS patients often show significant improvements on Valcyte. Valcyte is as antiviral against herpes family viruses, but it is also an immunomodulator, and an anti-inflammatory that potently inhibits microglial activation. So its benefits for ME/CFS may come from more than just Valcyte's antiviral action.

The same may be true for tenofovir.

 

[Ellkaye]

I'm happy for you and thank you for posting this information. I feel that if posting helps at least one person then it's worth saying what worked.

thanks, takes time to work out, but got there in the end to hit this nasty thing on the head and have normal recuperation. Lots of lessons to learn as we move on in 2015 and beyond about retroviruses and inflammation.

From a neighbouring country:
http://www.ncbi.nlm.nih.gov/pubmed/25833895

Four days a week or less on appropriate anti-HIV drug combinations provided long-term optimal maintenance in 94 patients: the ICCARRE project


I feel for the severely ill ones who have zero recuperation ability. This is a recuperation related illness and in them embedded even more so.

 

[digital dog]

How would us tired and lowly patients with GP's who are not that up to date on ME even start to consider these drugs?
Im not being facetious, I honestly want to know.
Do we course from the internet?

 

[Ellkaye]

The best dr's are the HIV dr's. They know the meds. Infectious diseases/immunologists.And strict medical surveillance and monitoring while on them if the best thing at the right moment.

 

[Ellkaye]

I had lunch today with a friend who is also HIV+ (but not m.e.) and he switched his regime 2 weeks ago to a new ARV cocktail Triumeq (abacavir, dolutegravir and lamivudine) - he said the constant anxiety he had been experiencing on his previous ARVs totally disappeared.

That, and the other HIV thread, got me thinking - I said to him maybe I should try different ARVs to see if they have an effect on m.e. - and now I'm reading about raltegravir - I see my doctor on Tuesday and will ask her about adding or switching my ARV regime.

Do u take viread?

 

[ScottTriGuy]

Nope, never been on viread.

It is encouraging - and perplexing - how ARVs are effective in some ME folks - yet my current regime (kivexa and viramune) has not prevented me from getting ME.