Heard of Indrepta : An affordable drug for CF?

BySeaFsurfer

Heard of Indrepta : An affordable drug for CF?

From its inception , I’ve been closely following the Sharktank research foundation which vowed to come into market with a cheap alternative drug for CF. And here they are with Indrepta A , B and C.

They have come with natural ingredients(polyphenols) which act as Potentiators and Connectors where Vertex on the other hand used their synthetic counterparts.

Indrepta A is a potentiator , used for gating problems occurring in Class III mutations. This is the alternative drug for Kalydeco. And it uses the same Geinstein and Curcumin combination , quite a few cfers used and claimed to have benefited from.

Indrepta B is a Corrector for Class II mutations like DDF508 to overcome the Protein processing resulting in misfolded CFTR gene. Indrepta uses Quercetin, Resveratrol and other flavonoids and polyphenols which are known to treat the protein misfolding issue.

Indrepta C is for Nonsensical mutations arising from Class I.

Unlike other CF medications Indrepta is cheap(comparitively) and is available for around 49$ for a month’s usage.

It is available for purchase only  in US as an over the counter drug(needs no prescription) @

https://planetarybiosciences.com/shop/

The reviews coming for Indrepata are exciting and few reviews are claiming great results. They have come out with an other product TauriNAC(N-Acytelene Cystene) to go with Indrepta. I see no harm in taking Indrepta. It at least might work on reducing Inflammation.

 

Not sure if any one from our subcontinent had a chance of using it. I plan to try it may be next month when I can procure it and use it for at least 3 months to see how it works.

To get more details on CF classes , about potentiators and correctors you can please visit  through the site http://cysticfibrosisindia.com

Please note that I am not endorsing this product or rejecting it. I am just trying to bring this product to your notice so that you can choose what you want to do. Kindly consult your doctor before use.

-SeaFSurfer

 

BySeaFsurfer

Treating CF without Antibiotics

Numerous studies are going on to understand Pseudomonas, the pathogen which breeds in CF lungs. While some studies said that p.a feeds on sugar, here are some studies which say p.a needs ferric oxide and ferrous oxide to form the biofilm in the lungs. This biofilm prevents antibiotics from reaching out to the infected area and also helps p.a to stick on to the lungs. Incidentally CF lungs have relatively more ferric and ferrous oxides than normal lungs and the more the quantities of fe3 and fe2 the more severe is the disease. Wretched bug it is that driving it needs lots of antibiotics and IV lines.
Now studies are being directed towards reduction of these iron compounds from lungs than use antibiotics. P.A inhibitors work towards destroying the food that these pathogens feed on there by reducing their chances of surviving and increasing lung health than using traditional antibiotics.  Idea sounds good and such ideas  are much awaited for.
AIT advanced inhalation therapies are already into clinical trials for their product NoxcureCF which is about using nitric oxide to tackle with p.a. Not sure if NoxcureCF has anything to do with reducing the ferric or ferrous oxide levels it surely is not an antibiotic and they say it works.

BySeaFsurfer

CF – A rare disease? May be not..

I am not buying the notion that Cystic Fibrosis is rare in India. I can leave it with a tag of “under diagnosed” , but certainly not attribute it, the rarity its lurking in. CF in Indian immigrants is diagnosed both in US and UK with incidence of one in 28,000 and 40,000 respectively. CF World wide studies reveal that 1 in 10000 Indians is a CF manifest.    Oh boy! that is 3000 CF babies a year and that definitely makes India the largest country with CF .  Now what is rare with CF in India is, that it being diagnosed properly. Only this explains my child’s Double delta 508 with me and my spouse not even close to being related but also that we come from two different states.  This  incident certainly cannot happen with rare diseases( unless there is a supernatural element involved ).
Why is it so hard to diagnose CF? With India hosting mal nutrition from long long time, the newly added problem of pollution, I guess keeps doctors guessing off the mark. To top these woes, diagnosis tests are hardly accessible or pocket friendly.  Only the top cities have the sweat test facility and  genetic tests are offered by a couple of big hospitals. A hefty amount of 30000 ₹ has to be shelled out for a genetic screening of 50 odd mutations. That’s bad enough.
Doctors on seeing a kid with under or mal nourishment and respiratory problems in India do not zero in on CF immediately cause they still think CF to be non existent in India. I literally went through 6-7 doctors hinting them that my sons problem could be more than a coincidence. All of them assured me that it is not CF. A geneticist whom we consulted even wrote a note back to my pediatrician that my child can not be a CF and never went forward with the genetic tests she is supposed to forward to a laboratory in Delhi. We had to go to a different geneticist to send the blood samples to Delhi where it came positive for double delta 508. So strange was my sons diagnosis. We only got him tested for dd508 cause we were by then sure that I was a carrier as my sister US is diagnosed to be one. Thankfully my son’s doctor did not wait for the test results to put him on creon . Soon after my kid had a rectal prolapse, he confirmed us the most dreaded news and started him on pancreatic enzymes.
If educated middle class parents go through this much confusion, god knows what uneducated and poorer class parents would be going through.

It is high time government/hospitals spread awareness amongst citizens of India about CF and slash down the unbelievable prices attached to the diagnosis and most importantly get the medicines to India.

BySeaFsurfer

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