Pulmonary Interstitial Fibrosis(Lung Disease)

Please keep posting her results, at least monthly. I am confident that mind does control much of the body's functioning, but have my doubts about long term effects when there is a physical problem.

I wish the best for you and her.

 

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Idiopathic Pulmonary Fibrosis

It will be really very pleasant and important for all of us to share their good and bad experiences about thius dreaded illness. I believe that use of Aloe Vera ( popularly known in India as Gwar Patha) may also help in this problem.

Pl come on and share your views/ experiances.

Dear Billy T. May I know your contact id to communicate with u.

 

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For now, just click on my name (top left this post) and send private msg to me. Explain why we can not communicate in the open posting. I do not like to carry out discussion in PMs, but use them almost exclusively to call attention to posts I think one may be interested in and have missed. I am very open - very little I keep private.

 

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How to lead Normal Life with Idiopathic Pulmonary Fibrosis

with this disease it is very much possible that one can lead normal life provided one should accept limitations. such as:-
1.he/she should know how much time he/she can work normally
2.take breaks when become tired/finds any symtomps of brethlessness
3.avoid the reaosns which gives breathlessness
4.avoid long trips, cold things , all other activities which leads to breathlessness
5.do regular excercises, yoga, breathing excercises etc.
6.take with full faith all the medicines
7.maintain a chart of how many times one faces problem in a day,weight chart etc..
8.continue with healthy diet


i believe above may help any patient to lead a normal life
i will come if anyone amends/further soggests about it.

 

Pulmonary Interstitial Fibrosis (Lung Disease)

Now my wife's health is much improved.

However due to low immunity she develops cough whenever there is cold climate or change in climate.

This hampers the progress achieved.

Improvement in immunity is a slow process.

Aurvedic doctor says entire process is very slow it may take another 6 months.

Any suggestions or experience for further improvement.

P.J.LAKHAPATE
plakhapate@rediffmail.com

 

What is the reason for Pulmonary Interstitial Fibrosis?

As I understand the Pulmonary Interstitial Fibrosis means reduction in diameter of air passages to lung.

Is it that this reduction in air passages are due to improper blood supply to the lungs.

Further this disease may be provoked due to dust, fibres or air pollution etc.

Pls clarify.

P.J.LAKHAPATE

M-91-9867069587
R-91-22-27702655

 

Glad to hear that (some time ago), but did not comment. CF is aterribel disease, often causoing death after years od increasing dibilation. I think there is no known cure, but here is some news just came to my (and the world's attention) which may be of interest to you and her:

"... promising results in an ongoing Phase 2a clinical trial for patients who carry the G551D mutation of CF. The drug is being developed by Vertex Pharmaceuticals Incorporated.

Patients who took the drug for 14 days showed significant improvements in several key indicators of cystic fibrosis, including lung function, nasal potential difference measurements and sweat chloride levels. The findings suggest that VX-770 improves function of what is known as the faulty CFTR protein. This early data is promising and could have important implications for studies of other drugs in development.

This is the first time that any potential therapy has improved the abnormal sweat chloride (salt) levels in a person with CF. Excessive sweat chloride is a key clinical indicator of cystic fibrosis. The "sweat test" is the traditional diagnostic test for CF.

"These early results are an extraordinary endorsement of our hypothesis-that small molecules can correct the basic defect and affect the clinical indicators of cystic fibrosis," said Robert J. Beall, Ph.D., president and CEO of the Foundation. "The emerging data for VX-770 represents the most exciting results we've seen from a Phase 2 trial and increase our confidence that we're on the right track."

The compound VX-770 resulted from a collaboration between the Foundation and Vertex. In 1998, the Foundation approached Aurora Biosciences (acquired by Vertex in 2001) and made an initial investment to use cutting-edge technology-known as high throughput screening-to find compounds to attack the core defect in CF. Since that time, the Foundation has invested $79 million in the project, and the two organizations have closely collaborated to advance VX-770 and a second CF compound, known as VX-809, through research and into development. ..."

Form:
http://www.medicalnewstoday.com/articles/102015.php

It will still be a very years before VX-770 is on the market, if it every is, but at least there is now some hope CF can be treated soon.

I have not noticed you active here for awhile, so am sending Email to you also. hope she is still at least holding her own against CF. I am not sure, but VX-770 appears to be designed for a type of CF that is associated with a particular genetic defect. You probably do not know if your wife has it. I do not think it iws known yet if VX-770 will help others without that origin of the problem. Also I do not know if Vertex's clinical group was selected to include only those that do - I bet that is the case as it would be worth the cost of screening potential patients to get better results / eventual FDA approval. (If VX-770 does not help, except in patients with that genetic error, and the trial included them, then it would need to be much larger and more costly to demonstrate stastically any favorable result that is real in the genetic defect patients.)

I will let you research it more. Tell me what yu find.

I own stock in Vertex, but hate to visit their web sight as stock is much cheaper now than what I paid for it. I think it will recover, if they get their main effort (on Heb C) to market at least a year before all competitors. (That still seem probable, but when I bought they were the only company with anything that seemed to be working.) It is still exhibit good saftey profile and quick virus "knock down" to undetectable levels, so I am holing on. - At least till near end of this year. (I sold some IBN at the peak of all times, just by luck, and now bought it back at just above half that price!) I bought it years ago and thus had about 600% profit. Near end of year I need to and will clear out a lot of "losers" for tax reasons. IBN is large Indian bank's ADR. Banks everywhere have been hit as have Indian stocks in general. I was dam lucky to sell only about 50 days ago essentially at the peak. Sometimes I feel like I still work - but as before, I get only part of the value I create. The IRS must love me. I just hate to see GWB using them to kill more people than Saddam ever did.

 

Last year PFT (PULMONARY FUNCTIONAL TEST) was carried out on 19-02-2007.
This year same test repeated on 1-04-2008.
The results are encouraging.
FVCL (Forced Vital Capacity ,Liters)improved from 37 to 54%
FEV1L(Forced Expiratory Volume in 1 Sec) improved from 49 to 72%
PEF L/S (Peak Expiratory Flow Lit /Sec ) improved from 39 TO 63%

Ayurvedic doctors are hopeful about further improvement.
We may have to wait for another one year as progress is very slow.
Any sugestions for further fast improvemets?


P.J.LAKHAPATE
plakhapate@rediffmail.com
m-91-9867069587
t-91-22-27702655

 

http://www.wikihow.com/Do-Pranayam

 

The fundamental rationale for surfactant replacement is to help restore the natural surfactant film and reduce surface tension at the air-liquid interface, thus reducing the tendency for alveolr collapse and improving oxygenation through a reduction in shunt. Think of two planes of glass with moisture between them, try pulling them apart. Replacement therapies are effective in neonates but results in adult patients have been less promising. Research continues as we speak.

 

Yes. I own share in Discovery Labs, www.discoverylabs.com. They would have their SRT on the market by now if not for some very bad luck. They had to designate three samples as "stability batches" - were going for a year of approved shelf life, and one failed. About 40 others did not! The FDA has it rules, but is taking this into consideration and they did very thorough investigation and are almost sure they know why that one failed. Their SRT is a very complex mix of many "active ingredients." I would be sitting on huge profit if not for their bad luck as got in early. (One of my daughter’s lives near them in PA and there was a story in the local free advertisement circular one day I read while visiting her.)

It is a shame. - A lot of babies have died due to that bad luck. Their SRT is better than the stuff now used, which comes from pig's lungs and is not pure or nearly as well characterized as Discovery's 100% synthetic version. The pig stuff is also clinically inferior as well.

 

Is it that due to Thrombosis the blood clots block the capillary arteries.

These blocked arteries cannot provide blood supply , in turn Oxygen supply is stopped.

Prolonged stoppage of oxygen supply may be the reason of fibrosis.

Is it true?

P.J.LAKHAPATE
plakhapate@gmail.com

 

Cause is not known. Here is some information that may be of interest:

"Idiopathic pulmonary fibrosis (IPF) is a disease characterized by progressive scarring, or fibrosis, of the lungs, which leads to their deterioration and destruction. The cause of IPF is unknown, and currently there is no FDA approved treatment. IPF occurs primarily in people 50 to 70 years of age. Based on the published scientific literature, median survival time from diagnosis is two to five years in patients with IPF, and most patients die from the complications associated with the disease. We believe that there are approximately 83,000 patients with IPF in the United States, approximately two-thirds of whom have mild to moderate disease severity.

InterMune has the latest stage compound currently in development for the treatment of IPF. Enrollment for CAPACITY, the Phase 3 program evaluating pirfenidone as a possible therapeutic candidate for the treatment of patients with IPF, was completed in May 2007. "

I own shares in InterMune (more for their potential in Hep C drug IMI-191 which although it will arrive on market at least two years after VX-950, now called “Telaprevir” may be better. I own Vertex also.)

Here is link to presentation of InterMune today (12June08):

http://phx.corporate-ir.net/phoenix.zhtml?c=100067&p=irol-EventDetails&EventId=1870319

The same drug ("pirfenidone") will be available in Japan perhaps in January of 2009 by firm Shionogi who has the Japanese, Korean & Taiwan rights.

Below are my notes related to IPF. (Intermune likes to point out to investors at these types of conferences that Pulmanary Arterial Hypertension, PAH has 6 drugs on the market selling ~1 billion dollars annually, even though only has 20% of the incidence of IPF, which has no drugs available.):

Pirfenidone (oral for IPF which has no drug vs 6 for PAH’s >$1e9 sales & 5x PAH’s incidence. May target other fibrosis targets also)
Shionogi has Japanese, Korean & Taiwan rights. Filed in Japan in March07. (RoW owned by ITMN)* 18March Shionogi** reported:
• Good Clinical Practice inspections passed at both the clinical sites and at the company.
• Shionogi presented P2&3on 368 cases total at 52 wk “positive effect”# (p= ~0.035) at Am. Thoracic Soc. 20May08 and:
• Abstract available at http://www.thoracic.org (Session C95, Publication Page A768).
• Shionogi expects a pirfenidone NDA approval in Japan and launch in their FY2008, (April 2008 til March 2009).
• Top-line results of 72 wk P3 CAPACITY in IPF in January of 2009.
• InterMune to make long term safety study with patients who have completed one of CAPACITY1or2, P3s which have 779 patients total. (95% detect prob. If 50% better; 85% detect p. if 40% better) Forced Vital Capacity is end point (but 2nd is P.Free.Survial)
Hoping for both US & Eu approval in late 2009 or early 2010.

Shionogi's results became publicly available two weeks ago (but InterMune has shared data with them for months). Here is link to InterMune review of the Japanese results:

http://phx.corporate-ir.net/phoenix.zhtml?c=100067&p=irol-EventDetails&EventId=1856807
-------------
# “positive effect” - Unfortunately, Pirfenidone is far from a cure. It only decrease the speed with which IPF disease kills, and by much less that factor of two - see slide 12 at the first link above. IPF is a grim picture.

 

Dear Ravi Kabra,

Health of my wife has improved a lot due to Pranayam and Yogasana.

Rarely she has a cough.She takes Asthalin for that purose.

She walks about 4 km every day.

How about health of your wife?

P.J.LAKHAPATE

 

Sorry I could not continue this discussion for a long time, I believe that following things can definetly help a patient :-

1 . Patient must be kept in positve frame of mind
2 . General health condition such as weight, strength, food etc. should be given proper attention.
3. Breathing excercise- A must as much as possible
4. Medicines prescribed by Dr.
5. Pray from god, the almighty

 

In last one year at least 7 persons from all over the world ( USA, Hydrabad, U.P.,Dubai, Delhi , Thane , Mumbai ) have contacted me for the treatment of Pulmonary Interstitial Fibrosis Disease.

They came to know about me through this blog only.

Anybody who wants to know more about the treatment about this disease can contact me.

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

 

Or for the latest scientifice research hear and see slides of the Intermune presentation of 6August08 at:

http://audability.com/AudabilityAdmin/Clients/BMO/10605_85200880000AM/primary_d2-rm3_intermune.aspx

There, for the first time, the Shionogi data (on the same drug) is available also. Unfortunately this is a terrible disease. No treatment that has any scientific evidence for working currently exists. The drug Intermune is developing* is unfortunatly not a cure, but does significantly slow the progression of the desease.
---------------
*and licensed to Shionogi for development in Japan where a shorter term test could get it approved more quickly.

PS that presentation should be available for a few weeks at least, but typically these company efforts to get funds to continue development programs disappear in a month or so or less.

 

I expect that support therapies (oxygen, for example) alone will not resolve the problem. She will probably need to be primarily treated with a combination of drugs and surgery.

You have to find a balance. Find the level of pharmaceuticals that is acceptable and use other means to augment the primary care method.

 

Some news (NOT ESPECIALLY GOOD) 18Sept08:

"... {FDA} cannot approve {Gilead's} application in its current form and an additional clinical study will be required. Gilead will continue its dialogue with the FDA to determine whether further analyses of existing data could lead to approval, or whether the company will need to conduct the additional study ...

"Cystic fibrosis-related pseudomonal infections represent an area of significant and urgent unmet medical need. Our goal is to work with the FDA to deliver this product to the medical community and to people living with cystic fibrosis as quickly as possible," said John C. Martin, PhD, Chairman and CEO, Gilead Sciences. "The FDA has not raised any significant concerns regarding the safety profile of aztreonam lysine. Therefore, we will continue our expanded access program for those individuals who have limited treatment options and are at risk of disease progression."

Gilead submitted its NDA for aztreonam lysine for inhalation to the FDA on November 16, 2007. Marketing applications for aztreonam lysine for inhalation are under review by regulatory agencies in the European Union, Australia, Switzerland, Turkey and Canada.

About Aztreonam Lysine for Inhalation:

Aztreonam lysine for inhalation is an antibiotic candidate for people with cystic fibrosis who have P. aeruginosa. Aztreonam has potent activity against Gram-negative bacteria such as P. aeruginosa. Aztreonam formulated with arginine is a FDA-approved agent for intravenous administration. Aztreonam lysine is a proprietary formulation of aztreonam developed specifically for inhalation. It has been designated with orphan drug status in the United States and Europe. ..."

 

InterMune, Inc. today reported that on October 16, 2008, 2008, the Japanese Ministry of Health, Labor and Welfare (MHLW) approved the New Drug Application (J-NDA) submitted by Shionogi & Co. Ltd. to market pirfenidone for the treatment of patients with idiopathic pulmonary fibrosis (IPF) in Japan.