Natco: I contacted the Indian pharmacies and no... - CLL Support

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Natco

Sabri2021 profile image
29 Replies

I contacted the Indian pharmacies and no one can confirm if natco ibrunat has been approved or has license or quality certificates, I would like to make sure that the ibrunat is not fake, can you please help me

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Sabri2021 profile image
Sabri2021
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29 Replies
WinJ3 profile image
WinJ3

Try contacting the company directly :natcopharma.co.in/contact/c...

Sabri2021 profile image
Sabri2021 in reply toWinJ3

done waiting for them reply

AussieNeil profile image
AussieNeilPartnerAdministrator

The issue with Ibrunat is that it hasn't been tested in a clinical trial overseen by the FDA or another country outside of India. I don't know what testing was done in India, but suspect a significant part of the price differential is due to the manufacturer not having to cover the cost of clinical trials, which after all are done to protect patients. So we don't have any information on how the side effect and adverse event profile compare with other BTK inhibitors, otherwise I'd list it here: healthunlocked.com/cllsuppo...

Assuming Ibrunat has a safety profile similar to other BTK inhibitors, the bigger issue is patent infringement and what might happen if the manufacturers of Ibrutinib enforce their patent protection rights. If you start Ibrunat monotherapy, you'll be anticipating staying on it for many, many years, because BTK inhibitors work slowly. In one Ibrutinib clinical trial, only 10% reached uMRD after 4 years on the drug. We know that suddenly stopping a BTK inhibitor, particularly in the first year or so of treatment, can cause very concerning disease flare, which reverses when you recommence BTKi therapy: healthunlocked.com/cllsuppo... As you can read, some flares were so bad that the patients' specialist thought their patients had developed Richter's transformation. Some patients were even given chemo treatment for what turned out to be pseudo Richter's transformation.

If you decide to give Ibrunat a try after confirming the above, then I'd recommend having back-up access to a legal supply of an approved BTK inhibitor.

Neil

Sabri2021 profile image
Sabri2021 in reply toAussieNeil

Thank you for your explanations, in the reality, I am looking for an Ibrutinib alternative with moderate/low cost, as you know the ibruvica cost around 7500 euros monthly and need at least 2 years of treatment,I agree the Indian pharmaceutical industry lack transparency no one replied to me when I asked for licences or quality certificates.

honestly, I am totally confused and need to make a decision as soon as possible, do I opt for the generic or find another alternative.

do you know any serious brand manufacturing generic BTK inhibitor with reasonable price?

regards

LeoPa profile image
LeoPa in reply toSabri2021

Logic says if it's fake it won't help you but it should not harm you either. If it works and you can ensure a steady supply you might win out. Blood tests should show in a few weeks which one is the case. If it's a life or death situation, is there a choice at all?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toSabri2021

Unfortunately, there isn't a big market for CLL and similar blood cancers, so despite hopes of competition bringing down prices, the newer drugs seem to be selling at a premium to Ibrutinib, which they may well be able to comand, due to their lower side effect and adverse event profiles.

Have you looked into clinical trials where you live? There may also be compassionate access programs available.

Neil

Sabri2021 profile image
Sabri2021 in reply toAussieNeil

Actually, just my mother started the treatment with Ibrivica since 3 weeks, and have only 4 boxes that's why I was looking for an alternative to ensure to get 2 or 3 years of treatments, she is in Algeria. unfortunately, there are no compassionate access programs in Algeria for CLL.

is there any website with generic BTK inhibitor drugs?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toSabri2021

It's too early for legal generics. :(

Chinhdo profile image
Chinhdo

I practised Leopa's idea : I was diagnosed in Seb 2019 , started treatment in Nov 2019 ơn Ibrutinib .3 first months original Imbruvica - good effect . From 4th month , ơn generic Bangladesh Ibruxen/ Ibrutix .6th month - almost normal blood works , CT...until now .It' s the life way for Cll people outside developed countries... I have no chance yet to get Indian generic...

Bangladesh generics
Chinhdo profile image
Chinhdo in reply toChinhdo

More foto

More foto
LeoPa profile image
LeoPa in reply toChinhdo

Glad you found a way to stay alive. Good luck!

Sabri2021 profile image
Sabri2021 in reply toChinhdo

Chinhdo, Thanks for your message, can we have more details about your actual situation how you feel and blood tests are the same as with the original ibrutinib? My mother 72 years have CLL and she started taking ibrutinib but unfortunately, we have fours months of treatment, I am looking for the best alternative on the generic market, I think the NATCO Ibrunat is better than the other product, even they lack transparency never gave me certificates or licences copies.

however please don't hesitate to share with us your experience and if you need any info just contact me.

some links about the Natco I found :

health.economictimes.indiat...

Chinhdo profile image
Chinhdo in reply toSabri2021

Here are my medical record before treatment Nov 2019

Before treatment
Chinhdo profile image
Chinhdo in reply toChinhdo

Before

2/3
Chinhdo profile image
Chinhdo in reply toChinhdo

3/3

3/3
Chinhdo profile image
Chinhdo in reply toChinhdo

October 2020

Test Ốc.2020
Chinhdo profile image
Chinhdo in reply toChinhdo

Oc 2020

2020
Chinhdo profile image
Chinhdo in reply toChinhdo

2/4

2/4
Chinhdo profile image
Chinhdo in reply toChinhdo

3/4

3/4
Sabri2021 profile image
Sabri2021 in reply toChinhdo

Sorry, I can not read the reports (photos are not clear ) however, I think you want to say that there is an improvement, using the Ibrutinib and after that the generic? as per my understanding, you may have stable good results after one year, but must continue the treatment for 4 years to make sure that the disease will not come back again,I am trying to get more details from Natco company to proceed and buy for my mother, please don't hesitate if you need information about what i got

Sabri2021 profile image
Sabri2021

have you read testimonials from people who have already taken the medicine?

Sabri2021 profile image
Sabri2021

THE NATCO IBRUNAT

Marie_paul profile image
Marie_paul

Hi.... I m from Egypt.... My niece is on Ibrutinib too.... We re struggling to afford the price too.. I ve heard about Ibrunat and may be we ll switch to It after few months.... We have the same concerns about efficacy..... Hope we ll reach to something

Sabri2021 profile image
Sabri2021 in reply toMarie_paul

I sent an email to Natco marketing manager and generic head , asking more informations and insurance for efficiency. Also the official channels to buy it and avoid fake products.

I will inform you as soon as I will get any feedback.

Marie_paul profile image
Marie_paul in reply toSabri2021

Thank a lot ....I ll be waiting for this

Sabri2021 profile image
Sabri2021 in reply toMarie_paul

Marie, can you please tell us what you heard about the Natco Ibrunat, did you got any peoples to experience feedback any information about the channels of purchasing, ..

Marie_paul profile image
Marie_paul in reply toSabri2021

I ve heard patients are doing good on It

Marie_paul profile image
Marie_paul in reply toMarie_paul

Unfortunately I dont have much informations

Sabri2021 profile image
Sabri2021 in reply toMarie_paul

Many thanks, we have to find proper pharmacies to buy it , to avoid fake products

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