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I am in primary infection (2 months), and, I do not know yet my viral load. As I am still in primary, then I start directly a monotherapy of Tivicay (tm) (Dolutegravir)?
ReplyDeleteMy doctor offered me this with other medication I believe Truvada and Tivicay or Triumeq.
The relief is not yet recommended by the doctors, at least my doctor does not look too closed on this subject.
I'm afraid of the effects of the Triumeq ... We're talking about dual therapy. I do not want to eat medocs for nothing. I still have time to see. I was thinking of asking my doctor to start like that. Above all, in the country where I am, they do not test Abacavir for hypersensitivity ... What do you think of that?
I have commented here:
Deletehttps://once-weekly-hiv-therapies.blogspot.fr/2017/05/first-line-tivicay-monotherapy.html
So I have started DTG + 3TC as first therapy. No side effects, just a little bit of anxiety (I had this before HIV) ... Otherwise I sleep well, I dream more or less normal as before, I hope it goes on. Fatigue are my biggest fears, but maybe with this bi-therapy I will avoid this.
DeleteHello Charles Edouard,
ReplyDeleteI take Genvoya for 4 months and I have side effects, nausea, pain of right side, no good sleep and triglycerids and cholesterol are well up ... I want to stop
Stribild (tm) or Genvoya (tm) pose a specific problem and always embarrass me. For a medical advice you see with a doctor (a good one...), and, I have published a list.
ReplyDeleteHere I do not give medical advice but inform my readers about the risks as published and identified.
http://charles-edouard-ma-liberte.blogspot.fr/p/medecins-allegeurs.html
In Genvoya (tm) there are, in quantity, fewer mg of molecules, and an acceptable efficacy. There is a booster, which slows down hepatic metabolism. This is not innocent, if, on the other hand, you take other drugs (anxiolytics, contraceptives ...).
The drug itself may be OK, but the interactions are very little studied. I suffered from one that was violent (potentially fatal), and that my doctor did not suspect. This shows that medical follow-up is not an answer to everything.
I had no choice but the Short Cycle, which saved my life.
There are 2 major aleviation routes: the Short Cycle (ICCARRE) or the mono-Tivicay (tm)
Unfortunately, to date, they have not yet testeda Short Cycle (taken every day except Saturday Sunday ...) with Stribild (tm) / Genvoya (tm).
Furthermode, the very fact that you took, in your history, Stribild (tm) / Genvoya (tm) adds an identified additional risk to the mono-Tivicay (tm), which may not be the right choice, in this context known as the Achilles' Heel.
Personally, I prefer the short cycle (because it is very good also for morale), but the first official trial (Quatuor) with Genvoya (tm) has not yet started ...
So, in one way or another, you probably need to change (especially if you feel bad enough to want to stop).
The trendy one is Eviplera (tm) (aka Complera(tm))... As it is said to be well tolerated, people have no difficulty keeping in pace 4/7. And if it works, it is all benefit for the patient.
I have published a list of doctors in charge. You will want to note that Leibowitch, for a time in 'I am in retired' mode, has become very active and kicking again.
If you leave me an e-mail (which will not be published) I will pass it to him. If not, you do as indicated on the list of doctors.
Today the Short Cycle is authorized by the experts of the ANRS: take advantage of it, and not to remain in this state there, especially since this leads very quickly to the depression, which is serious.
Do not hesitate, give some news regularly, and thank you for your interest in this blog.
Thank you for your site and your incredible job, remarquable source of
ReplyDeleteAllows me to ask the right questions; i tested positive in September 2016 and start of treatment end of October 2016, followed at le 190 [a Mens'Health Clinic], undetectable in 6 weeks, and therefore since mid December 2016 2 VL test. On my last appointment, in May 2016, after 6 months of successful treatment and 2 last good results, cd4 goes back to 450, I ask the question: what is next ? Ask for aleviation : No! said my Doc, you already are on a 1 pill!
Well... I am the one taking them... For the sake of my mood, please, I pleaded him. He told me: you had some resistance. I answered him that many have and yet, go with lighter treatments, that the viral rebound is not in 2 days, am disappointed and shocked. What to do?
Reduce by myself? Already 7months in treatment, is it too early? I am followed at 'Le 190'. I need some opinion, thank you.
I made the reduction by myself on the basis of the first ICCARRE-1 publication. There are now doctors who do it. It is there that you should seek medical advice, here it is just a blog that gathers public information, sometimes scattered.
ReplyDeleteI fight the idea that says 'trust your doctor, he knows you'. This type of advice is unproductive ... Trust a doctor who knows the subject is already much better!
Especially since the doctor, who for ideological reasons or obsession with the 'community' viral load, will soon forget his Hippocratic commitments.
There are 2 types of ttrilas (and practices), ttrials have been carried out without a priori check of the genotype (resistances profile), and ICCARRE and ANRS-4D where this profiling is an inclusion condition. In Paris nothing could be simpler than having the Premium prognostic done: there are at least 4 doctors who do it.
In the 'classic' timing, one waits 1 year before starting the alleviation: CD4 'excited' (one says: activated) are a target of choice for the virus. So we wait for activation to fall. Also, make sure that the chosen combo is really effective.
With the arrival of Dolutegravir (in Tivicay (tm) and Triumeq (tm)), we may have to reconsider things, but to date, nothing confirms this. So we have to wait 12-18 months.
It is better to wait a little and succeed, because the lightening 'strategy' will serve you all forever ...
You have resistances! Big deal! Who does not? Me, I have (or at least I had ...). It's going to be the cream pie of doctors ideologists, who, as a matter of principle, do not want to look at the relief.
As you have a few months in front of you (history of your 12 months), there are intelligent things you can do:
- first of all, retrieve your resistance profile (genotype): this document belongs to you. You can use the standard letter that I have proposed here
http://charles-edouard-ma-liberte.blogspot.fr/p/demande-dossier.html
- go see Truchis in Garches or Pierre Marie Girard at Saint Antoine
- asks to get into the Quatuor essay, which will just start at the right timing for you. (And you will know if you are eligible, that's already ...)
I am working on a practical, modern method for evaluating the genotype; I'm working on it ... It will probably be an online algorithm; By then, you can leave me a comment with your email address (which I do not publish) so that we can exchange about this project
Hello Charles,
ReplyDeleteI started mono-DTG in Nov 2016 only 6 weeks after infection. I was UD 30 days after starting. I visited Dr. Katlama in Paris soon after this and she told me to "stay the course". She also tested my reservoir level and it was below the limit of detection (<66) which is considered a "rare event", but she thought it was to be expected given how quickly I went on mono-DTG.
Soon after this however, other doctors in Barcelona and NYC convinced me to add 3TC/FTC as "insurance, so I don't lose the entire class of INSTI's". So at the end of last year I added 100 mg FTC (half a capsule) to my program. Been UD for five times since then.
I am now considering switching the FTC for Rilpivirine as it looks to soon be approved and may even be available as a long-lasting injectable. It is also a lot less money than FTC, which I went with as it has slightly less toxicity than 3TC. Lastly, I read the following article which makes the case that NRTI's may (hypothetically) promote latency, as well as inflammation, and thus prevent a cure:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4560250/
Everything I have read online makes me think that RPV is quite non-toxic with a side effect profile similar to 3TC/FTC. No negative effects have been found on the mitochondria and there seems to be minimal toxicity to the liver/brain as well.
I was wondering why you describe RPV in your blog as "harmful" and with "bizarre psychotic" effects. That's not really the impression I get from everything else I have read. I don't really care about the meal requirement as I already take DTG with food, as I believe you do. Any response would be much appreciated!
Thank you for your very helpful blog. Without it I doubt I would have had the courage to start mono-DTG and the subsequent "light" program when there were a chorus of voices saying it's a bad idea.
Thank you for your detailed testimony!
ReplyDeleteThis blog is not a medical advice .
The blog is bilingual, and the French part is richer ... the answer is in 2 parts (too long)
The idea of the Mono-DTG arrived in 2014, immediately associated with the 1/7 concept, it's Hypodolu.
https://charles-edouard-ma-liberte.blogspot.fr/2015/07/hypo-dolu-un-17-veritablement-tres.html
The analysis of NCT00708110 shows that this is far from being silly:
https://charles-edouard-ma-liberte.blogspot.fr/p/domono-montherapie-de-ti.html
https://www.youtube.com/user/Alafeuillade
The idea of making DTG a tool for remission / healing / cure came pretty soon afterwards.
Siliciano had commented that the cure would probably take place in stages, starting with the better predisposed patients, that is to say those who were treated early and well.
Wainberg had predicted that Mono-DTG would be very effective in naive patients, but slightly less (higher failure rate) in 'experienced' patients, and in particular patients who have already used RAL or EVG.
Everything I published confirms his predictions. He also touched on the issue of remission with DTG, I will come to it.
To address DTG remission, a favorable patient pool should be established, ie treated early and in Mono-DTG
In order to avoid DTG remission, every effort must be made to avoid the creation of such a pool: the Pharmaceutical industry will do so.
Since the subject of this blog is the 1/7, premise of the remission maintained, one is interested in MONO-DTG. See our Practical Guide, under construction:
https://charles-edouard-ma-liberte.blogspot.fr/p/guide-pratique-mono-dtg.html
I am interested only in perspective 1/7 and remission.
The clinicians of Barcelona took the Talon of Achilles in the face: which made it possible to identify it. There is no difference in the rate of failure between Mono-DTG and DTG / 3TC (see Lamidol)
In the naïve Mono-DTG, there are currently no known failures (about 20 patients). This failure rate is NUL. Why then add 3TC? If the failure rate is zero? No need ...
Just a little orchestrated paranoia, to which Lanzafame remains insensitive ...
Me, I added 3TC to my Mono-DTG (which worked well, even in MiniDolu): it is in sight of 1/7 and even 1/15 ... Otherwise there was no reason.
Why 3TC? First because that is what the doctor put on the prescription.
ReplyDeleteWhy not RPV? Because RPV is not free from psycho problems. RPV only reduces the psychotoxic effects of EFV in approx. 50% of patients:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4438898/
Improvement of the [...] neurological side effects in patients switching from an EFV-containing regimen (41 of 86; 47.7%).
On the toxicity of 3TC, it is difficult to prove that more than 95% of patients have 3TC or F-3TC anyway, so it is impossible to disentangle what is due to the treatment, the virus, 3TC or the rest.
But in our perspective we add 3TC (or RPV or DRV) ONLY for 4/7, 1/7 or even remission (1/15, etc ...).
Apart from this approach, the addition to a successful patient seems superfluous.
For a naive patient, making and succeeding Mono-DTG is consistent with the Wainberg prediction, the Katlama visit, the practice of Lanzafame.
Adding 3TC (in 7/7) is not imposed by experience
Changing the 3TC by RPV is not necessary. To do so from the perspective of 'preparation' for injectables, that is to say, a strategy that will never allow testing or access to remission (maintained or partial, that is 1/7), is to go in the other direction than the one we have identified.
When one is as lucky that you have been, it is a shame to miss out, on the pretext of situation of patients whose profile was very different.
Ananworanich and Katlama measured the Eclipse in early treated patients with small reservoirs: 2 to 3 weeks (on average!).
So when you have an Eclipse, a long Eclipse, why not take advantage of it? The single weekly intake is really cool, and the toxicity, we do not care a bit, needless to say.
I am glad that the blog has allowed you to better understand the strategy of your doctor in Barcelona.
I hope that reading the blog will enlighten you more about the perspective of remission, which is the subject of this blog and which is not in the perspective of injectables.
BiCycle strategies (DTG / x in 4/7, 3/7, etc.) will soon be formalized and published here.
this blog is not a medical advice
Thank you very much for your response! I have a doctor in Thailand (where I spend 4-5 months in the winter starting October) who is willing to work with me and approve weekly VL testing at his hospital. Now that I am approaching one year on therapy I do think I am ready to try 4/7 and perhaps 1/7.
ReplyDeleteBut I have one question which I am not sure is addressed in your blog. My doctor in NYC made the point that HIV proteins (and low-level HIV replication) cause many issues with inflammation and neurological/CNS disorders DESPITE always being UD on standard tests. So he said that while adding FTC might add a bit of toxicity, it could further reduce this "behind the scenes" HIV activity and thus reduce the toxicity of HIV itself and perhaps prevent HAND, for instance.
And similarly, by reducing dosing to 1/7, do you potentially allow an increase of this "silent" HIV activity that wouldn't be picked up by VL testing, which offsets or exceeds the reduced toxicity from lower dosing?
Thanks for the input. I will answer shortly. Before being on Blogger my on-going posts about 4/7 and even 1/7 were posted somewhere else, where it had been removed under 'activists' pressure.
ReplyDeleteyes those things happen...And they are still happening. The same people are actively working on getting my blog oblitaretared. I am carefull not to look as if I was giving a medical advice. So please kindly bear this in mind.
Alternatively you can provide an email address that will not be published and kept confidential. Furtheron, we have ca. 100+ users who go 2/7 or even 1/7. Some of them you way want to exchange with, although not everyone is comfortable with English...
I am currently working on the Bicycle Trial project, which would set the inclusion criteria for a pilot DTG/x 4/7, 3/7, 2/7 trial.
I am getting there, but not yet...
Definitively being 1 year UD before starting the shortcycle is a prerequisite.
Also, have access to more frequent VL is high recommanded (an required for a formal trial).
Moving progressively 5/7 (6-12 months) , then 4/7 (12 months), then 3/7 (12 months) etc. is also part of the strategy.
This will be published in French first, then will percolate to the English version. So keep an eye on both.
We already have friends who are doing Mono-DTG 4/7. Actually I was very sceptical when they told me this, but, I trusted them and played around by myself, with success;
So definitively, we will publish some practical infos. If you want to make it short, BiCycle is ICCARRE by replacing TRI by DTG based Bi. Same 'protocol';
So our pratical Guide 4/7, can give you some insight:
https://once-weekly-hiv-therapies.blogspot.fr/p/practical-guide-safe-47.html
HAND: yes, unexpectedly this had, little by little, become a concern for me, after a few years of treatment. I won't go into details but it can ruin someone's live and professionnal career.
what I have seen is that it had led me to a desesparate situation, but that alleviation to 4/7 had put it to an end , and that, now, after a few years at x/7, it has (almost) resolved completly.
If my experience can be of any help it would be : yes, this may happen! And this is very precisely the very good reason to start the x/7 descent BEFORE it occurs because the recovery is slow.
In other word, if you like your current 7/7 regiment, then deruce it to x/7, so that you can stay on this favorite much longer!
Strangely enough, although not that strange, doctors observe HAND in their patient (under treatment) an no one dares question the pharmaceutical treatment itself. Letendre had demonstrated that CNS penetration is required. This was before DTG. DTG data show a good penetration.
Letendre had also shown that using 'better' penetrating drugs would correct a HAND situation. But the problem is that 'better' penetrating molecules are also ... penetrating. And you can feelse it.
There is a crossroad here: when things are doing well, you can 'secure' by increasing pharmaceutical content. But also, when thing are working well, why not, on the other hand, decrease the pharmaceutical load.
If you go to many doctors and weight by the number of 'second' opinions, this will always tilt the scale towards more medication.
Doctors like Katlama, Lanzafame or Leibowitch are very few. But they are very experienced too...
My take on HAND, in as far as I could testify, is that, for me, it was clearly overmedication-induced, and it took aleviation and time to resolve!
Inflamation: this potential argument aleviation has been studied thouroughly in ICCARRE, BREATHER, ANRS-4D.
for ICCARRE see:
http://www.valas.fr/IMG/pdf/faseb_j_juin_2015.pdf
for Breather (article and interview, easier to understand) see:
http://once-weekly-hiv-therapies.blogspot.fr/p/clinical-trial-57-breather.html
for ANRS-4D, see:
https://www.youtube.com/watch?v=7RQgyObm0qQ
and MOPEB0321, page 83 in :
http://www.ias2017.org/Portals/1/Files/IAS2017_LO.compressed.pdf?ver=2017-07-27-211231-197
(this was in July, I'll report it soon)
In all 3 cases, it is shown that markers have not worsen, and for some of them, have improved.
DeleteThe idea that x/7 reduction could lead to under-the-hood activity has thus been falsified several times. Furtheron the opposite route, i.e. intensification with adding a 4th or 5th molecule to a successful regimen, has shown no benefit. Zero.
It is quite interesting that you report those anti x/7 argumentation by doctors: it helps us highlight the studies that clarify/falsify such argument.
Typically US doctors are overmedicating and have ZERO experience whatsoever in Mono-DTG nor x/7.
If you would want to talk to a doctor with expertize why not try Dr Lanzafame who has 20 naive patients in Mono-DTG, which is so many times more than any other.
One thing you will find convinient with x/7 strategies (including x/7 with DTG/x or Mono-DTG) is that you can always go back to 7/7 if you feel uncomfortable: you are in charge!
Some patients under Mono-DTG or DTG/x and at 4/7 dare not go down any further as they are sexually active and do not use condoms.
In the 88 Leibowitch patients, all at 2/7 or 1/7, there has never been any contamination of the Seronegative partner and 11 healthy babies.
There is very little difference between sustained 1/7 (or 1/15...) and the Visconty full remission. If you were in full remission, would you get back to full therapy , 7/7, under the pretence that it could prevent under the hood activity? Would you recommend Timothy Brown to take meds, 'just in case' ?
Please kindly bear in mind that you have the ideal profile to go down to 1/7 (may be further) which would be so close to a remission that you would not notice being infected any longer.
Keep working on it, keep us posted and register among our 100+ refueled remission 'cohort', when you get at 4/7!
Thank you Charles Édouard again for this well documented blog. I come back to you (I had posted a comment on the blog in May June).
ReplyDeleteI am followed at "Le 190", tested positive in September 2016, under treatment since October 2016, 3 undetectable VLs, CD4 which go up well.
The doctors of "Le 190" were absolutely against any alleviation, risk of resistance, blah, blah ... It is dangerous, they said ... Leibowitch is a charlatan and so on ...
I made an appointment with Dr. Landmann, in the 10th in Paris, he advises me no alleviation before 2 years of treatment, tells me about some resistance, I will be at 1 year of treatment end of October with 3 VL INDETECTABLE.
I do not know what to think. What do you think ? Waiting another 1 year to lighten a little will do me good morale, but this factor does not seem to convince doctors, looking forward to your return, thank you for being there, this blog is great.
this blog is not a medical advice
ReplyDeleteAleviation, in short cycle, if it is well undertaken, means ZERO failure. Between Garches and ANRS-4D, we have 200 patients, not counting the others (Breather, etc ...)
The Morlat report lists the short cycle in its recommendations. The recommendation is "... under conditions similar to those of the studies carried out, a short cycle strategy, 4 or 5 days out of 7 may be considered".
It can not be clearer.
The first thing to look at is therefore the trial conditions. The inclusion conditions are conditions defined a priori, at the inclusion. If there are failures, they are analyzed in order to develop conditions a posteriori, at the conclusion.
As in ANRS-4D, there was ZERO intrinsic failure, as in ICCARRE-2, one can not modulate these conditions, a priori; we must know them. They are here:
http://once-weekly-hiv-therapies.blogspot.fr/p/clinical-trial-anrs-4d.html#I
Look at it in detail and make an honest score. You get to 1 year of treatment, admittedly, and it may be necessary to wait a little before reaching 1 year of undetectability. Look at the date on the first analysis result to be <50.
Besides these conditions on undetectability, you can read carefully the Practical Guide:
http://once-weekly-hiv-therapies.blogspot.fr/p/practical-guide-safe-47.html
And if there is something that is not clear does not hesitate to ask your questions.
Leibowitch is not a charlatan ... ANRS has wasted 600,000 Euros and 7 years of time to prove the contrary and the proof is incontestable: he had not told no bullshit. See:
http://once-weekly-hiv-therapies.blogspot.fr/p/clinical-trial-anrs-4d.html
And the same applies to relative remission (1/7 ...)
So this argument is baseless.
The best is probably to take appointment with him, he is in Paris, following the instructions that are here:
http://charles-edouard-ma-liberte.blogspot.fr/p/medecins-allegeurs.html
(R. Cross, who runs the association has a good character ...)
So you could have a detailed opinion and prescription for frequent VLs. Once you have that in hand, we can think about what to do next.
this blog is not a medical advice
Hello Charles-Edouard,
ReplyDeleteAs a reminder, I am abroad; I started a bi DTG + 3TC attack therapy. I am in my 5th month and a half.
My two blood tests were <40 copies. But now for a few days I have begun to feel irregular tremors in the muscles all over the body.
It is not inconvenient and according to my doctor not serious but it worries me anyway.
I have this particular effect in the lower left eyelid. According to my Doc this is due to the DTG which touches a little the neurological system. What do you think? I am in 5/7 and next Wednesday I will go for a new blood test.
Thank you for your help
this blog is not a medical advice
DeleteIn France, we have all the molecules and the means to carry out advanced investigations. Are you in such an environment? In my understanding: no ...
So, in case of problems, the options will be limited and not too nice.
So you're right to make frequent VLs! They do not protect you from a possible failure, but from its consequences.
So you're waiting for your VL, without stress. Your doctor let you do a procedure that is not yet approved (the trial is not finished)
It's already pretty nice of him. It would be honest to talk to him about the 5/7 you seem to be doing. So to see if it does not make a syncope ...
Yes, DTG, or any other treatment, on the other hand, can give such effects; and there is a share of stress, which may be due to following a strategy not yet tested.
If you take your medicines at least 2 hours later and 2 hours before a meal, the concentration in the blood will be at a lower level.
There is an advantage in following the well-marked path, it is that one does not stress (too much)
Remove stress a bit, a good drink if needed, a good sex party (cautiously), no drugs ... Evening with buddies, etc.
You will have your results early October. You will see...this blog is not a medical advice