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Breena



Joined: 25 Aug 2004
Posts: 317
Location: NE Mississippi

Post Posted: Mon Feb 06, 2012 12:56 pm Reply with quote    Back to top    

Moosdapper, I hope the drug works for you. That sounds like a very reasonable price. I didn't take anything with it. On the branch of the study I was on, I could have take the Prednison, Azathriopine, NAC combo with it. I had already gotten off them when I learned that. I kind of wish I had tried all together for a while when the quick decline started.

_________________
IPF/UIP OLB 6-04
Pirfenidone 1-2007 - 12-2009
Dbl lung transplant 3-21-2010
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birder



Joined: 12 Jun 2011
Posts: 3
Location: india

Post Posted: Mon Feb 20, 2012 11:45 am Reply with quote    Back to top    

Moosdapper wrote:
Is there anyone here who is currently taking pirfenex? I am wondering if it really works and how bad the side effects are.


I have been taking Wysolone/Pirfenex/Azathioprene/NAC for over One year now. Have coped quite well with the side effects. (Was diagnosed with NSIP in 2008).
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amospur



Joined: 28 Feb 2012
Posts: 3

Post Posted: Wed Feb 29, 2012 12:47 pm Reply with quote    Back to top    

hi,
i am not sure about this drug pirfenex/pirfenidone - there is information available both showing positives and negatives. one website that i have come across with informaiton on this is: xxx
there are lots of articles there relating to this medication. it is unfortunate that it is not available in the USA. however, i have been researching FDA policy for personal drug importation which states:

"That said, FDA's guidance for coverage of personal importations of unapproved drugs identifies several factors that should be considered by FDA personnel when determining whether to exercise enforcement discretion and refrain from taking action against the importation of unapproved drugs. The General Guidance Section states that FDA should consider not taking enforcement actions against such importation:

"when 1) the intended use [of the drug] is unapproved and for a serious condition for which effective treatment may not be available domestically either through commercial or clinical means; 2) there is no known commercialization or promotion to persons residing in the U.S. by those involved in the distribution of the product at issue; 3) the product is considered not to represent an unreasonable risk; and 4) the individual seeking to import the product affirms in writing that it is for the patient's own use (generally not more than 3 month supply) and provides the name and address of the doctor licensed in the U.S. responsible for his or her treatment with the product or provides evidence that the product is for the continuation of a treatment begun in a foreign country/area."

based on the above regulations, it is confirmed that you can import pirfenidone for personal use into USA.

i have researched some canadian pharmacies for this - xxx


however, i want to know what experience others have had with personal importation of pirfenidone into US along with canadian pharmacies as intermediaries - please let me know.
thanks
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Moosdapper



Joined: 02 Jan 2012
Posts: 7

Post Posted: Wed Feb 29, 2012 1:13 pm Reply with quote    Back to top    

Hi, I have recently been in contact with a major pharmacy (over 1,000 pharmacies) in India. they sell pirfenex (pirfenidone) for approx. 32 cents per pill, although slightly weaker pill (200 mg vs. 263 mg for Esbriet, the major brand). The Canadian pharmacies get theirs from India and resell all over the world.

I can look up the contact info and post it later for anyone that is interested. I have not started pirfenidone yet, my new doc wants to wait another 3 mos. He has about 12 patients who are taking it and 3 or 4 are having a few problems with side effects. He also says it is not a cure all.

Hope this helps anyone wanting to take pirfenidone....
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amospur



Joined: 28 Feb 2012
Posts: 3

Post Posted: Wed Feb 29, 2012 1:18 pm Reply with quote    Back to top    

hi moosdapper,

thank you so much for the quick feedback. there is so much to scour on the internet - i have been reviewing the following site even more: xxx

certainly some decent information there - i think the key is to make sure to buy the cipla brand from a licensed entity with credibility. i also went on you tube to see some actual videos posted with the packaging - they look okay as well.
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Moosdapper



Joined: 02 Jan 2012
Posts: 7

Post Posted: Wed Feb 29, 2012 1:33 pm Reply with quote    Back to top    

Hi again, I went directly to a well known Indian pharmacy because of fear of not getting the real thing. It is made by Cipla and is much cheaper than from the Canadian pharmacies, plus you have no real way to check out these mail order pharmacies.......so let the buyer beware.


amospur wrote:
hi moosdapper,

thank you so much for the quick feedback. there is so much to scour on the internet - i have been reviewing the following site even more: http://www.buypirfenidone.com/
certainly some decent information there - i think the key is to make sure to buy the cipla brand from a licensed entity with credibility. i also went on you tube to see some actual videos posted with the packaging - they look okay as well.
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BrendaJ



Joined: 16 Jun 2011
Posts: 704
Location: Canada

Post Posted: Wed Feb 29, 2012 2:15 pm Reply with quote    Back to top    

Before you buy anything from them, you might want to check out Big Mountain Drugs on a site called "PissedConsumer".

I always remember the old saying- if it is too good to be true, it probably is.
Please check it out before you give your hard earned money to them.
The rule "let the buyer beware" applies in Canada as well as anywhere else.

_________________
Diagnosed in '08. Confirmed IPF/UIP , lifetime non-smoker. On O2 May/11,
On Esbreit (Pirfenidone) March 2013
Lung Transplant Listed Jan/14
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amospur



Joined: 28 Feb 2012
Posts: 3

Post Posted: Wed Feb 29, 2012 4:44 pm Reply with quote    Back to top    

brenda,
thanks for letting me know. i am going to do some more research on this and ask a few friends as well.
i reviewed the following video which profiles the cipla product that i believe is the trusted brand:

I have done some more research online about big mountain drugs and they are licensed and verified by both CIPA (Canadian International Pharmacy Association) and Pharmacy Checker (this is an independent accreditation body) - i will follow up with them to check if xxx is a member in good standing.

i noticed on you tube there is another canadian pharmacy promoting this as well:

it is also showing the cipla product and is xxx

if anybody has any actual experience ordering from a canadian company i would be interested in knowing. some of the indian companies maybe cheaper but i just want to be comfortable in knowing and ordering from an accredited company that has proper licensure - better to maybe pay a little more and be safe. this is why actual ordering experience will be useful.

my other concern is whether there is any good clinical evidence that the Pirfenex actually works!!
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hdesai



Joined: 18 Mar 2012
Posts: 5
Location: United States

Post Posted: Mon Mar 19, 2012 2:53 pm Reply with quote    Back to top    

I have been diagnosed with IPF since past year January(2011) among other meds typical Prednisone and Cellcept, I am also taking Pirfenex. It has helped me a great deal. Little costly but worth it. My PFT is the same as it was a year ago. (a tad bit better) I am also taking Curcumin and doing Yoga(breathing exercise) . All together could be working. I get Indian brand pirfenex and can get it for any one. with little trouble.
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O2guy



Joined: 17 Jul 2008
Posts: 41

Post Posted: Sun Apr 15, 2012 6:07 am Reply with quote    Back to top    

Moosdapper wrote:
Hi, I have recently been in contact with a major pharmacy (over 1,000 pharmacies) in India. they sell pirfenex (pirfenidone) for approx. 32 cents per pill, although slightly weaker pill (200 mg vs. 263 mg for Esbriet, the major brand). The Canadian pharmacies get theirs from India and resell all over the world.

I can look up the contact info and post it later for anyone that is interested. I have not started pirfenidone yet, my new doc wants to wait another 3 mos. He has about 12 patients who are taking it and 3 or 4 are having a few problems with side effects. He also says it is not a cure all.

Hope this helps anyone wanting to take pirfenidone....
Thank you so much for this information. Have been taking approved & licensed Japanese version Pirespa for 31/2 years. Not curative, but slows progression. Stats say 3.5 years median tim diagnosis to death and only 1 in 5 surviv for 5 yrs and I'm in year six.. I'M IN 6TH YEAR SO MT ASSUMPTION IS DRUG WORKS FOR ME. ery expensive, so initial USD10. per pillhas gone up with yen fluctuations to USD 10,200 for 3 months (800 pills) Wantto continue authentic drug at lower price ans andlogistical info needed. Akso considering slidenfal ans PHT # now 95. Looking forward to future productive conversaion

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Seeking info on ordering pirfenidone from Japan.
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O2guy



Joined: 17 Jul 2008
Posts: 41

Post Posted: Sun Apr 15, 2012 10:16 am Reply with quote    Back to top    

Moosdapper wrote:
Is there anyone here who is currently taking pirfenex? I am wondering if it really works and how bad the side effects are.
Not facile w/ computer so tend to run on. Havebeen takingPirespa which is Japanese brand nme for licensed and approved Pirfenidone. Drug not curative but slows progression of disease. Statistics show median time of death from diagnosis is 3.5 years and I' 6.5. Stats show only one in five survive five years ans I'm six and a half. Drug appears to be slowinf progress of disease for me. Mfg warns of getting in sun when taking. Only side effect for me is expense. Cost for 800 tabs (3month's supply) now over USDollars 10,000. Am seeking how-to of relliably Indian source at present. Info appreciated.

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Seeking info on ordering pirfenidone from Japan.
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Moosdapper



Joined: 02 Jan 2012
Posts: 7

Post Posted: Sun Apr 15, 2012 9:52 pm Reply with quote    Back to top    

Hi O2guy, I contacted the following company in India who has over 1,000 pharmacies in India (also has one in the Airports). The Pirfenex is made by Cipla which a very reputable company. The cost is about USD 300.00 per month, plus shipping. Esbriet (Pirfenidone) can be bought in Germany for USD 4,000.00.

Hope this helps......

Apollo Hospitals Enterprise Limited
LPG House, E-18, B-1 Extension, Mohan Co-operative Industrial Estate,
Badarpur, New Delhi - 110 044 INDIA
Tel. : +91-11-4140 2222, 6451 1231, 3083 7500 |
Fax : +91-11-4140 1111 | Extn. : 500, 552
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O2guy



Joined: 17 Jul 2008
Posts: 41

Post Posted: Mon Apr 16, 2012 7:48 am Reply with quote    Back to top    

Moosdapper wrote:
Hi O2guy, I contacted the following company in India who has over 1,000 pharmacies in India (also has one in the Airports). The Pirfenex is made by Cipla which a very reputable company. The cost is about USD 300.00 per month, plus shipping. Esbriet (Pirfenidone) can be bought in Germany for USD 4,000.00.

Hope this helps......

Apollo Hospitals Enterprise Limited
LPG House, E-18, B-1 Extension, Mohan Co-operative Industrial Estate,
Badarpur, New Delhi - 110 044 INDIA
Tel. : +91-11-4140 2222, 6451 1231, 3083 7500 |
Fax : +91-11-4140 1111 | Extn. : 500, 552
thankyou Moosdapper,you are most kind and helpjul. Moving things along at this end. Might help if you could provide German demographics for Esbriet. I'm working with a mid-east colleague who is having his home medical connections chack things out. Best . . . O2guy

_________________
Seeking info on ordering pirfenidone from Japan.
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Ma_Megabyte



Joined: 23 Jul 2012
Posts: 5
Location: Northern CA

Post Posted: Mon Aug 27, 2012 8:45 am Reply with quote    Back to top    

I found several pharmacies in Canada that sell it online, but I am not sure how legitimate they are. One of them says your doctor can send the prescription later, Wink and their doctor will write a prescription based on your medical history so you can get the meds before then.

Has anyone used one of these pharmacies? We are having no luck getting an rx from my husband's docs.

All the best to you from Silicon Valley...Ma Megabyte
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BrendaJ



Joined: 16 Jun 2011
Posts: 704
Location: Canada

Post Posted: Mon Aug 27, 2012 12:40 pm Reply with quote    Back to top    

I dont know how legitimate these on line pharmacies in Canada are. I live in Canada and you have to have doctors prescription to get a drug and they have just legislated that you have to show identification when you pick up your prescriptions.

_________________
Diagnosed in '08. Confirmed IPF/UIP , lifetime non-smoker. On O2 May/11,
On Esbreit (Pirfenidone) March 2013
Lung Transplant Listed Jan/14
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