Pirfenidone

My doctor suggested I try Pirfenidone and after research found out following:
Developed by Intermune as Espriet
Europe & USA Trade Name: Esbriet
India Trade name Pirfenex Company Cipla
Japan Trade Name Pirespa
Not approved by FDA in USA but it is approved in India,Europe, Japan and China...
Can be obtained on line from Canada Pharmacies but will be shipped directly from approved countries.

Currently trials in USA-
Supposed to halt the progression and possibly more.

Anyone using it now?

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Hello 7seas

I have been nagging anyone who will listen to me about Pirfenidone. I live in Uk and also France. It is supposed to be available in France but when my doctor clams up and becomes evasive, I think it is because it is so expensive. Yes you can get it from the Canadian pharmacies but only with a prescription. Here in Uk I have just started a trial for QAX576, no fancy name till it is finished with all the trials. But I can't find out much about Pirfenidone here in UK either. I believe it has been licensed but not totally done and dusted. The drug is safe but I understand there are some questions about safe dosing levels.

I have been told that by the time I finish with my current drugs trial, Pirfenidone should be available. But here in uk it can be a post code (zip code) lottery. each of the uk's counties is allocated a fixed amount of funding for health, schools and everything else. Whether it will be readily available in the county I live in, remains to be seen. But I live in hope. As do we all.

But everything I read says it is good. slows the progression of IPF. But then they do say NAC does that too, I don't see how we can ever know, because there is no fixed prognosis for this disease, so if you live longer than you thought you would, how can you tell what has helped you? Every year is a bonus and a God send.

If you can get pirfenidone then I would say go for it! At our age (I am also a senior citizen) who will fight our corner if we don't?

Good luck. I would like top know how you get on and if you get to try the good stuff.

xx Shirley

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As I understand, pirfenidone is being used successfully in parts of Europe. Never looked into pricing, or obtaining it. It seems to be an effective treatment, from what I have read. So, keep us posted on your experience using this drug.

We are all looking for the best options, prolonging our lives, and hoping for a treatment that has merit.

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Thanks ShirlyC &Eldee your comments- My RX calls for 200mg x 3 a day I have ordered it thru a Canadian Pharmacy and it is sent to me direct from India..... cost for 180 pills is USD $289.00 I have ordered and delivery is 15-18 business days Ill comment when I receive and use them... as with all meds they have side effects. As all with IPF know-we all handle IPF & the side effects of meds differently........ There is no FDA protocol or guide. We are all on our own journey and with Gods help will arrive with grace.

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Shirly C- further- I could have gotten into pirfenidone trial but you get the real deal or a placibo- Your comments regarding rationing of funds to various zip codes hits right into our current debate on Obama Care with bureaucrats making choices for our needs. If my doctor wont give me a RX, i would keep going to other drs til one would agree and write it. It appears you are restricted to doctor who is cost conscious rather than able to respond to your needs.....
The only way we know is by Xray & /or MRI----- My annual Xray shows minimal progression & I stopped immuran/cellcept & reduced my prednisone to 10mg.. Lung capaciay is 40% But that is me! At 75 I wanted quality of life- Others must react to their own situation.
good luck shirly blessings on you

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I am just starting the Ascend study for Perfenidone and hope I get the drug not the placebo

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good luck on the pick- my guess is if you have looked at the side effects possible and you get one you will have a good idea! How long do you stay on it????

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I am now 13 weeks into the pirfenidone trial and have completed
spirometry 6mwt and other tests today to see if the ipf has progressed further or is stable. I am pleased to say that everything ie FVC 02 levels etc have not changed. Whether this is a result of the drug or would have stayed the same anyway is impossible to say. I probably do have the Pirfenidone rather than the sugar pills as I have side effects which are associated with the drug. These are some nausea tiredness after meals/taking the drug and skin irritation. I stay on th trial for 52 weeks from the start date. At the end of the trial I expect to be offered to continue with a further trial which is an open trial of the drug not a double blind trial.

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Pirfenidone is currently undergoing NICE procedures before it will be made more generally available in the UK. After that there come the questions of money, side effects, etc.

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7seas,
the drug trial is 52 weeks. if you finish the study the company will put you on the drug whether you had the drug or the placebo

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Shirley,

Here is an article that was recently published by Intermune about Esbriet reimbursement in France:

InterMune, Inc. (ITMN) recently announced that the Comite Economique des Produits de Sante (:CEPS), the pricing committee of France, has granted reimbursement for InterMune’s Esbriet (pirfenidone).

Esbriet is marketed for treating adults suffering from mild-to-moderate idiopathic pulmonary fibrosis (IPF), a rare and fatal lung disease. The decision of the CEPS makes Esbriet the first drug to be reimbursed in France for the disease.

Management at InterMune stated on a conference call that following discussions with the CEPS, an ex-factory reimbursed price of €25,000 per patient per year has been authorized by the committee. Management said that the ex-factory reimbursed price comes to approximately $32,000 at the prevalent exchange rates.

On the conference call, it was further stated that the drug will become eligible for reimbursement only after its price is published in the French Journal Officiel. InterMune expects to make Esbriet available to the French population following the publication. This is expected by year end. InterMune is recruiting and training a special team to promote Esbriet in France.

We note that Esbriet, which was approved in the EU in February 2011, is already available in Germany, Austria, Sweden, Norway, Denmark, Iceland and Luxemburg. France will become the eighth EU nation to market the drug by year end.

Management stated on the conference call that it expects to conclude discussion regarding Esbriet’s pricing and reimbursement in Italy, Spain, Belgium and the Netherlands by year end. Similar discussions are expected to be concluded in the UK (first quarter of 2013), Ireland and Finland (first half of 2013). Esbriet will be launched in those countries following pricing and reimbursement approvals by the relevant authorities.

Our Recommendation

We currently have a Neutral recommendation on InterMune. The stock carries a Zacks #3 Rank (short-term Hold rating). We expect investor focus to stay on the pricing and reimbursement process in Europe.

http://finance.yahoo.com/news/french-reimbursement-esbriet-201429164.html

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Thank you Courtney
My French doctor mentioned Esbriet when we last talked. I can understand him being hesitant in prescribing, although it might not have been readily available back in March of this year.
We are British and currently enjoy French permanent residency. We lived in France for 5 years and still use their heath system when we are there. Dr Sesboue's might have thought, why should they pay for my treatment if the NHS UK won't.
I always understood that as pensioners out health bill was ultimately paid for by the NHS UK anyway. In France these serious and long term illnesses are completely funded by the state. I have never had to pay a penny for any of my hospitalizations or my medications in the three years since PF diagnosis. They have a super health system. But because of health problems both my husband and I have returned to UK albeit we still have property in there. We could in all honesty move back there permanently again, and take advantage of our French residency, if Pirfenidone is to be made available there. BUT...Is Pirfenidone as good as people suggest? It is difficult to say, if one does not get worse with IPF, is it the natural course for that person, or is it something in their medication?

Thank you for your interest and your reply. We are in France again in October and I always go to see my lovely little French doctor when we are there, so I may talk to him again.

Kind regards
Shirley

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Clinical Trial in Clearwater! I found out today that there will soon be a clinical trial for Perfenidone in Clearwater. They are currently looking for participants. Here's the info: Dr. Francis J. Averill, MD. 802 N. Belcher Road, Clearwater, Florida 33765. Phone: 727-447-3000.

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Thanks Hopefulday- All this info is great!- Again one must consider the risk of placibo against cost of obtaining pirfenidone overseas.which in the USA is not covered by Medicare and I assume since it is not fDA approved by any insurance either.
I was told it will be 18 biz days from order date bought thru Canada but dropped shipped from India.

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Hi 7 seas - why not give Dr. arville a call and tell him your concerns. I'm sure he will be happy to discuss the issues with you. Good luck!

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Hopefulday:- I got a great doctor here on Long Island and have already ordered the Rx- should arrive any day now. Im 75 so each person has to look at his own profile. - Im ok in my decision. Thanks for your concern.

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Ordered Pirfenidone Sept 12 thru Canada online pharmacy and received directly from India Sept 27. take 3x200 a day. So far no side effects........

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Hi 7 Seas and anyone else that may be on Pirfenidone,

I am interested to know how you are all doing one this drug. Are there any special specifications for any one to be able to use it.
I know that it is said to be good for people with mild to moderate IPF.

I am going to my Resperogolist in Jan. to see if he will recommend it for me.

Good luck to all of you.

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Question for you: Someone posted a while back that medical care is "free" in Canada. Does this include drugs such as this?

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I am being considered for a clinical trial of the drug, however, my family wants me to start on the drug now,rather than risking getting a placebo. I see that I can get the drug on line thru Canada, but you need a prescription, which the doctors don't want to do since the FDA has not approved it. I guess Canada will start carrying it in January 2013. How can I get the drug now, without a prescription? Then too, how can I get to see a Canadian doctor who could give me a precription in January?

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The situation about Pirfenidone in the UK is still unclear. NICE (the UK National Institute for Clinical Excellence) who make the national policies have yet to approve the drug for general use. They are still considering whether to approve it. Until they decide the drug is only available on a Named Patients Program where the doctors have to apply for permission to use it for a particular patient.

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