[Sarv Punj]

I have gone through some of the correspondence on the need for Oxygen. I would like to share my experience as I am closely monitoring the condition of my wife. It’s true,Oxygen requirement for individuals suffering from IPF or other COPD disease is unique to individuals. My wife started using oxygen about 1 1/2 yrs back @ 2-3 lpm constant flow however with the progression of disease it increased to 4-5 lpm till as late as January 2020. Lately she suffered 2 episodes of exacerbations , one in February and another in first week of July which has resulted in tremendous increase in Oxygen need. She is now needing Oxygen @ almost 20 lpm. I am using 3 oxygen concentrators in series to get that amount of Oxygen supply. We have also obtained 2 Jumbo Cylinders as standby for in case of an emergency.Mind you , I am talking of round the clock supply of Oxygen , not intermittent. She was in hospital for 8 days but due to fear of COVID, we got her home last Wednesday and arranged everything at home.

[Sarv Punj]

Hi everyone. I was reading some news items elsewhere which said that prednisone is generally not used in IPF patients. My wife however is now taking 35 mg prednisone together with Pirfenidone 800 mg twice daily and is on Oxygen 24×7. We tried to titrations prednisone to 30 mg with the intention of increasing Pirfenidone to 800 mg three times a day but she was not comfortable with that. She felt that by reducing prednisone , her breathlessness increased. She now continues on on prednisone 35 mg and Pirfenidone 800 mg twice. She is stable though but side effects of prednisone are evident viz puffiness around eyes, face swelling, mood swings and fatigue. Most of the time she sleeps. Her food intake is ok. Her Oxygen saturation drops even with slightest movement or exertion even when the Oxygen is set at 6-7 litres per minute. So most of the time she rests in bed with oxygen set at 4-5 litres per minute.

[Sarv Punj]

HiCharlene,
I read your query about changing the nasal cannula and some of the replies too. As you know, my wife is on Oxygen and uses Oximyzer (pendant type) which has a nasal cannula attached. The manufacturer has specified a months duration for changing the Oximyzer but we feel that it depends more on the upkeep and condition of the cannula. Plastics tend to get harder over a period and may start hurting. This may warrant changing it.Sometimes mild nasal discharges enter the opening of the canula and make it dirty . This needs to be cleaned regularly else it may block the flow of Oxygen. Oximyzer canula costs Rs 4000/- a piece but it helps to conserve oxygen. If the patient needs 5-6litres per minute with normal canula, Oximyzer reduces that requirement to 3-4 litres per minute maintaining the saturation to almost 97-98%. Our experience is that we change after one and a half month.

[Sarv Punj]

Hello Everybody everybody on the Forum. Various posts on EGGC are very enlightening. I am still not sure which brand of Green Tea Extract I should buy for my wife. There are numerous brands available in India, local as well imported. Also what potency capsules are adequate. I will be grateful if more light is thrown in this regard.
Thanks.

Sarv

[Sarv Punj]

Friends I have read the news about EGCG found to be useful in treatment of IPF. While green tea is easily available, do we have to buy EGCG  (the green tea extract) specially or it is automatically delivered to the body by taking green tea regularly. Kindly educate me on this. Thanks.

sarv

[Sarv Punj]

Hi Charlene,
Thank you very much for your prompt reply. I can understand what you said. Different persons may have different experience with the drug. My wife however refuses to restart OFev , In fact presently she is off Pirfenidone too on Doctor’s advice and taking only Omnacortil 30 mg once a day. We shall restart Pirfenex (Pirfenidone) as soon as her tongue and surrounding areas in the mouth heal and she is able to eat well. We will check with the pulmonologist once again if OFev 100 mg twice or thrice a day be restarted (Subject of course my wife agreeing to it). Having lived for 8 yrs with IPF is creditable in view of the general prognosis in the context of this disease. Still we hope and pray that she continues to live comfortably till survival. Thanks again .

Sarv

[Sarv Punj]

Dear Friends. I am from India. My wife who has been suffering from IPF for about 8 yrs and was doing well with Pirfenidone 800 mg three times a day and 10 mg omnacortil daily but after about 4 yrs of this treatment her breathlessness started going up and she had to use supplemental oxygen @ 2-3lpm day and night.This kept her going but with much less exercise tolerance. Recently, last Feb she felt extremely low, weak and incapable of moving and even speaking but no fever. We moved her to hospital.She was discharged after 10 days after being stabilised on a higher supply of Oxygen @ 4-6 lpm.During her hospitalisation the treating Pulmonologist put her on Nintedanib (OFev) 150 mg bid in addition to Pirfenidone 400mg three times a day. She was tolerating this combination without noticeable side effects but last few days she is again feeling low, very less appetite and low energy. The doctor has advised to stop both Pirfenidone and nintedanib for a couple of days till she feels better.

Incidentally I just read in the forum that OFev can be bought from India at $ 0.30 per tablet. That’s not true. I have been buying it for Rs 1100 ($15) per capsule which is very hard on me.I was also wondering if OFev 150 mg bid can be substituted by OFev 100 mg three times a day (overall 300mg total during a day. Strangely this combination works cheaper in India (One cap of 100 mg costing Rs550 ($8) which means $24 per day as against $ 30 per day on 10 mg tablet. I have however not received any confirmation from the forum for this substitution though our pulmonologist seems to be agreeable on this.Could anybody throw some light on this.Thanks.

[Sarv Punj]

@megan-zetter

Hi Magan,
It’s really enlightening how patiently you dealt with your late dad’s illness during his last five months. I have read the thread partially though but seem to have gained a lot. I am 81 and my wife is in late 77 yrs and is suffering from this life threatening IPF. I admire your courage too to have gone through the pain of losing your dad so dear to you. I am passing through a similar phase. My wife has been suffering for the last about 8 long yrs but lately her condition has deteriorated a lot. She had been very active throughout her life but this slow declined seems to have made her very slow, silent and despondent. There is a lot to learn from you. I must thank you for your very explicit account of your dad. Stay blessed.

[Sarv Punj]

Dear Dr Salzberg,
Thank you very much for providing the contact details of OFEV Open Door, I will surely try to call them. I believe the number given by you is U S number. You also mentioned that 150 mg bid is more beneficial. I wanted to know if 100 mg three times a day (ie total dosage for the day is 300 mg) will give the same benefit or not because this means substantial saving in cost. Thanks again.

[Sarv Punj]

Hi Charlene,

pits heartening as well as heart rending to read experiences of different IPF patients. I shared the story of my wife yesterday. She was started on Cyendiv 150 mg twice daily ( Same as OFev)  last month in combination with Perfenidone 400 mg three times a day after being hospitalised for 10 days due to sudden sudden exacerbation of her illness . As I had mentioned she had been on low dose of Steroids (max 20 mg)+ Perfenidone 800 mg three times daily.She did fairly well for about 5 yrs , but the breathlessness started increasing with little exertion.However, it’s only last year that she started using oxygen at 2 lpm during day only and was doing well with that. Later the requirement of Oxygen increased and she was put on Oxygen 24×7. The oxygen requirement kept on increasing and after her recent hospitalisation its 5 to 7 lpm. She is yet to feel any difference after starting Cyendiv which costs whopping Rs 66000/- (say US dollars 1000.00) for a month’s supply.Its really hard on me but I want her to live.I have only 2 daughters both in U S and both have been suffering fro Autoimmune diseases , one with Idiopathic Pulmonary Hypertension, and another with Moyamoya and other multiple issues.
I am looking forward to early breakthrough in the ongoing research to at least benefit those who are recently inflicted with this life threatening disease.

Sarv Punj

[Sarv Punj]

@wifeofipfpatient

Hi Sara,
It is heartening to know that your husband is feeling much better on OFev. Wish him full recovery.You mentioned about OPEN DOOR FOUNDATION . Will it be possible for you to share their email contact so that I could write to them for my wife who is suffering from IPF for the last 8 yrs. She was hospitalised this February for 10 days after sudden exacerbation of her disease. They put her on OFev in addition to Esbriet (Pirfenidone). As you rightly said, the cost of OFev is phenomenal and we in India are not covered by the state.
Thanks and regards,

Sarv