Pulmonary Interstitial Fibrosis(Lung Disease)

I.L.D problem

Hi,

I have also started ayurvedic medicine and my father has started doing pranayam, some times they get the stomach pain because of dry cough. It has been 25 days of this treatment but I can definately say that it is better than allopathy. Mr. Lakhapate had helped me suggested me and I give thank to him for his precious suggestion.

If any one can suggest anything else or want to comment please go ahead.

Dipender Kumar
+91 9953757273
dipender82@yahoo.co.in

 

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Mr. plakhapate is still active at Sciforums, but has not reported how his wife is doing recently. I hope well, and that your ayurvedic medicine works for you too, but I tend to believe more in conventional medicines that have passed rigorious double blind evaluations as placebo effects are very real, but ultimately fail against universally fatal diseases like IPF or advanced prostate cancer (when anti-androgen no longer control.) etc.

 

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It is satisfactory to note that now lot of development is taking place for IPF but still these new drugs are to be available in market, I will be really happy if any one can guide that how a patient can be befitted from these research and developments.. especially in the country like India..

 

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Can you import drugs from Japan? The name of the drug in commercial market in Japan is: Pirespa.

 

Sad news less than an hour old:

"The Food and Drug Administration asked for a new clinical trial of the medicine, Esbriet, to support its effectiveness in delaying the progression of idiopathic pulmonary fibrosis, the company said today in a statement. InterMune fell $36.18 to $9.26 at 4:35 p.m. New York time in Nasdaq Stock Market extended trading. The shares had fallen $2.60, or 5.4 percent, to $45.44 before trading was halting pending the company’s statement. "

What a shock! I am very sorry for those who need it but glad I sold my covered calls* and took my profits although a few weeks later I could have sold the stock for more.

If person buying my shares via exercise of the call has not sold them he/she really took a beating (80% drop in a few hours). I did not understand why the stock climbed significantly above my strike after I sold the calls. The independent review group was solidly behind approval in their recommendations to the FCC so I thought it surely would be approved. I thought the rise when that news broke was about all I could hope for so I sold the calls. I still have no idea why price continued to climb for a few weeks.

When trading resumes and price stabilizes, I may buy back in. The IPF problem ain't going away. There is a terrible need. I don't understand the FDA on this decision. They just approved Denderon's advanced prostate cancer (CRPC) treatment, not a cure, last week and it extends life less than this rejected drug does (assuming ITLM's P3 results are correct, which the FCC seems to doubt.) and cost $93,000 /year!

------------
*See post 59 for details. The strike was $30 and of course I collected for selling the calls a few hundred too.

 

More details:

"From BioWorld Today (May 5, 2010) but see where I copied from at first link.

InterMune Inc. failed to win FDA approval of Esbriet (pirfenidone) as a treatment for a fatal lung disease, known as idiopathic pulmonary fibrosis (IPF), despite the strong backing of an agency panel of experts. ... CEO Dan Welch said it currently is unclear whether his firm would need to conduct an entirely new study or if it could submit data from a Phase III study conducted by Osaka, Japan-based Shionogi & Co. Ltd., which holds the rights to pirfenidone in Japan, where it is sold as Pirespa.

InterMune had submitted a summary of those data to the FDA with its application for Esbriet, but regulators said in March that the agency could not rely on that information since the actual results had not been provided to the FDA.

"We have a data-sharing agreement in place* {with Shionogi} ... We don't even know, however, at this time until we meet [with the FDA] what role if any the Shionogi Phase III data might play," Welch said. But he added that InterMune's current read of the complete response letter is unclear whether the Shionogi Phase III study would fill the FDA's request. ..."

From: http://pharmalive.com/news/index.cfm?articleID=702108&categoryid=9&newsletter=1

As I followed ITMN closely for years I know that there was close sharing with Shionogi of all experimental results, BUT neither can release the others results without their OK. This could get sticky as it is not in Shionogi's financial interest to have ITMN quickly on the market as a competitor. While they can only sell in Japan (plus S. Korean and Taiwan, as I recall), there is nothing that I know of that prevents me from buying there and shipping to other countries for clandestine resale. For example ship to Canada, outside of FDA control and mail drug into USA.

The following article on a just approved drug for advanced cancer (CRPC) only extends life expectancy four months and cost $93,000/ year. Typically you will live ~ 3 years with CRPC any way so that is about $300,000 spent on their drug for four extra months. ITMN's drug gives the same four months at a fraction of the cost. Yet FDA is not sure of that so rejected it. See:

http://www.forbes.com/2010/04/29/prostate-cancer-vaccine-business-lifestyle-dendreon-provenge_2.html

 

5 Things that actually do help . . .

Vitamin C in a high dose (3000 to 4000 a day)
Vitamin E (400 to 1000 a day)
Vitamin D ( recommended dose)
Multiple Vitamin (I recommend Geritol)
Daily Exercise

My husband was diagnosed with end stage COPD and was given 2 yearsa to live back i 1994, he is still alive and relatively well now in 2010. He is on 7 lires of Oxygen 24/7. The vitamin regime has kept him as well as possible, given the damage that was already done by the COPD. The latest Lung research has identified Vitamin E profalactic benefits in helping to keep patients from developing COPD and other Lung Diseases.
.

 

Hi Dallen

Last month my father got the urinary tract infection and we left all ayurved herbs which were helping a lot, now condition is not good and I have got that it is a life threating decease. God is almighty.

If these vitamins gives lot of help then I'll try these, Thanks

 

Pulmonary Interstitial Fibrosis

Yes, my wife's health has improved considerably.

In this summer , she ate ice cream after 3 years.
Further she was eating fridge cooled watermelon daily in the month of May2010

Also for one month she could manage without any medicines.

Now when rains started we again restarted all medicines as precaution.

Further I like to inform that use of SAFRON is found to be very useful

P.J.LAKHAPATE
plakhapate@gmail.com

 

Yes my wife also had urinary tract infection.

Chandanasav (made from sandle wood) found to be very effective

P.J.LAKHAPATE
plakhapate@gmail.com

 

Deeply regret to inform the sudden demise of my Father (on 23/07/2010), had done everything but everybody has to go and this is the reality. I was in front of him as he wished, actually it is very hard to see your loved one to die in front of you.

What could we do, my father's age was 57 yrs and we didn't have anything to save him. We have reached on the moon and have discovered so many thing in medical science but when it comes to lungs then we fail.

It is a very very sad thing that we couldn't do anything about this decease, when we are happy we never think about these kind of things but when we face these it gets very difficult, I serve my father for 7-8 months and I'm very satisfied that I made my father's death so easy and last breath was taken so comfortably. I knew that the things would happen in that way. There was no pain as I always wanted.

In respiratory failure death becomes easy as I saw, Now my Father has gone on his way and always will be with me and now looking me as I feel. Wish for his soul rest in peace.

Have nothing to say anything else and want to forget this episode, may God give strength to everyone to fight in the condition from which I went through.

God bless you all.

Dipender Kumar

 

To Dipender:

Your post makes me even more angry with The FDA's decision _ See my post 65 (&66). At least you did everything you could.

You might want to write to the FDA and tell them to reconsider - people with IPF, like your young father have no proven help. Intermune's drug should be made available to them - it has proven to at least extend life and ease breathing.

 

I remember reading some studies that patients with idiopathic pulmonary fibrosis had an increased prevalence of gastroesophageal reflux. There are many studies on the internet linking the two and some studies were looking to see if this could be a cause of IPF. I had three family members who passed away from this and all of them ate Rolaids like candy.

 

I was discussing with my wife as to why IPF(Interstitial Pulmonary Fibrosis ) occured to her.
While talking she revealed because she had migrane (Headache) problem she tried all different doctors , ultimately she started taking Crocin Tablets (3-4 per month as required).
I studied the side effects of Crocin on internet.
I found that Crocin can cause IPF.

Beaware those who are taking Crocin as a regular tablet.

Now her health is much improved.
In fact in the month of May 2010 she did not take any medicines for one month.

As a precaution we restarted medicine in June 2010.

P.J.LAKHAPATE
plakhapate@gmail.com

 

To Depender,

Very sad to note the demise of your beloved father.

May his soul live in peace.

I like to know how long your father was taking Steroid treatment and how much quantity?

I know several patients who continue with steroid treatment as per doctor's advice and ultimately land up with 24/7 Oxygen treatment.

P.J.LAKHAPATE
plakhapate@gmail.com

 

I am of course glad your wife is doing well, but as I expressed many post back, that essentially never happens with idiopathic pulmonary fibrosis (IPF). Note the first world is "idiopathic" (meaning the cause is unknown).

In your wife's case you think that Crocin was the cause of what you erroneously call IPF. I.e. You have the "I" standing for "Interstitial" which is consistent with your thinking you know the cause; however, I think that is usually called ILU, Interstitial Lung Disease, which is a very broad designation for many lung diseases, including as a sub category IPF.

You should be very glad your wife does not have IPF as then the outlook is dim - increasing difficulty in getting O2 & discharging CO2 which eventually results in death. Even the drug discussed in post 66 only delays death some months - it is not a cure. There is no cure known for IPF and AFAIK, no one spontaneously escapes IPF causing death (Unless they die of some other cause first.)

 

I know that for IPF (Idiopathic Pulmonary Fibrosis) there is no cure in allopathy.

That does not mean there is no cure for the disease.

Fortunately Pranayam ,Yogasana , and proper diet has helped to improve the situation.
Since this is chronic disease I think it will take some time to cure the disease completely.
More than 60 patients have contacted me and are using Ayurvedic Treatment
and many have confirmed that they are getting good results.

Some do not follow the instructions hence they are not getting the result.

What is Stem Cell technology?
If we activate certain cells then any miracle can happen.
One has to know which cells need to be activated and how to activate them.

P.J.LAKHAPATE
plakhapate@gmail.com

 

I agree, think, learning how to activate certain cells may be the route to a cure, even for IPF.

This is based on my understanding of what happens when you cut your skin. After the inititial blood clotting, fiberous tissue is laid down COMPLETELY IN RANDOM ORIENTATION. Then in the following week or two, cells eat away the fibers with useless orientation. I.e. only the fibers that were streched with movement remain a month later. Thus there are cells that can remove fibers that are useless. If I had IPF, I would do a lot of very deep deep breathing hoping to get at least the never stretched fibers eaten away. Perhaps if all the fibers are not stretched, the cells don't "know" which they should eat away.

 

I am sad as well as glad due to following reasons

I am sad because I came to know that one in ten thousand is suffered from this disease.

I am glad that the relatives of the patients suffering from this disease are reading this blog and are contacting me. More than 60 patients all over the world have contacted me and they are satisfied after providing the priceless guidance.

Pls do not hesitate to contact me

P.J.LAKHAPATE
plakhapate@gmail.com
M-91-9867069587
T-91-22-27702655

 

Here is more to be sad about:

"... Gilead Sciences today announced it is stopping ARTEMIS-IPF, the company's ongoing Phase III clinical trial of ambrisentan in patients with idiopathic pulmonary fibrosis (IPF), due to lack of efficacy. ..."

More at: http://pharmalive.com/news/index.cfm?articleID=752085&categoryid=9&newsletter=1