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Starting Ofev
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@charlene-marshall
Thank you!!!!!!!!!!!!! Huggggsssssssss…..
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Hello Sue Ann, the symptoms you are describing are common for some patients with IPF. I didn’t have burning, but I had a cold sensation in my lungs and throat. I know some of our members will get chest cramps or aches in their lungs. There will really is not a one size fits all guide book for pulmonary fibrosis patients. You ask about environmental influences, I was and am irritated by perfumes, the air fresheners you stick in the wall. There are many smells affecting me but at least now I don’t go into coughing fit. I hope this helps, take care.
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Hi Phil,
Thanks so much for getting back to me and sharing more about your experience with OFEV I’m glad you were able to start on the drug quickly – I know many who unfortunately struggle to get it. I’m also glad to hear you’ve not had a lot of side effects, that is wonderful news. Thanks so much for sharing and wishing you the best!
Charlene -
@Charlene Marshall
Good afternoon Charlene and everyone else who might be tuned in. We all find ourselves in the middle of what many describe as a nightmare and given our respective underlying lung condition, we have to take extra caution. As you know my wife and I winter in Florida and were not scheduled to return until April 25th. However when we saw the number of cases in the US climb from 5800 on March 17th to 13000 on March 19th we decided it was time to get out of Dodge. I won’t get political but that country is in for one hell of a time ahead.
As our health and government officials keep emphasizing, we are all in this together and staying together (at the appropriate physical distance) we will overcome.
Take care everyone.
Bob
PS is there any chance you could get the developer of the site to jig it so when we log in we don’t have to scroll all the way down the page every time?
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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.
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Hi Bob,
So nice to hear from you, thanks for writing to us. Isn’t that the truth – finding ourselves in the middle of a nightmare! I think daily of my fellow IPF/ILD patients, and hoping everyone is taking extra caution and being as safe as possible. I’m glad you’re back home on Canadian soil – did you drive back? The numbers in the US is very concerning, I agree. Glad you got home when you did. Thanks for the update!
Good recommendation on the update to reformat the site so the most recent posts can be at the top. We’ve looked at this in the past, but this seems to be a difficult change on the developers of the site to make. We’ve not figured out a way to do that on our end, but worth looking into again. Thanks for the suggestion 🙂
Charlene. -
@sarvpunj
Hi Sarv,
Thanks for writing to us and explaining a bit about your situation. As you can see, the “starting Ofev” thread is very active, with lots of information to read through. Sorry to hear that despite Pirdenidone, your wife’s breathlessness increased and that she now requires supplemental oxygen. Glad the hospital could sort out those troubling symptoms; I have heard of some patients being placed on both Ofev and Esbriet (Pirfenidone) but not many. I can’t imagine the side effects associated with being on both anti-fibrotics, that must be tough. I am on Ofev, 150mg twice daily and tolerating it well now. However, I know of many patients who had to be reduced from the 150mg twice daily to 100mg. They seemed to tolerate this better overall, but everyone’s experience is of course different.
I unfortunately can’t share much experience when it comes to obtaining Ofev in India, as this isn’t something I sought information about. If the doctor is agreeable on the change, I’d recommend going with it as they’re the ones who would know best. If that is an option and it is cheaper, that is a bonus! 🙂
Thanks for writing.
Charlene. -
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
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@sarvpunj
Thanks for replying, though sorry to hear your wife isn’t wanting to try the FDA-approved medications for this cruel disease. I know the side effects can be terrible, however, they can also be managed well with different strategies. Is she not wanting to try the Ofev out of fear of additional side effects? I can understand that, however, I wouldn’t rule out trying it as she may be more tolerant of Ofev than Esbriet. She may not either, but at that point, at least she would know and could make an informed decision about whether or not to take the anti-fibrotics. Unfortunately, these are the only two drugs known to slow the progression of the fibrosis and the reduction in dose (to 100mg) may really make a difference. Keep us posted on how she’s doing and what you decide. Take care, Charlene.
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@sarvpunj
Hi sarvpun, I echo everything Charlene has said. In your fist posting you said your wife was taking both Esbriet and Ofev. I know there has been some trials of this combination but the last i read was there was no significant advantage. Also i have to assume that the side effects of taking both medications have to be greater. Like charlene I am on Ofev 150 and the only side effect is generally mild diarrea. So keep trying to convince her to try Ofev on its own. Good luck.
PS Charlene: I see the developers solved the scrolling problem. Great!!
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Hi Bob,
So nice to hear from you — I hope you’re doing okay in these strange times of COVID-10. Happy Easter to you!
Glad the developers fixed the scrolling problem, I know they’ve been working hard on it and hopefully the user-ability of the site is improved for you a bit 🙂 Thanks for writing and stay well.
Charlene. -
Hi I don’t know if I should start a new thread “stopping Ofev” , I stopped on Easter Saturday after another unauthorised discharge while in bed Fri night. I found, even on only 100mg x2 daily the benefits were out weighed by the side effects, lack of bowel control and a general feeling of continual dullness. My wife says while I’m on Ofev I’m not the same person.
Four days after stopping Ofev I feel a lot better, clearer in the head and happier.
I’ve since spoken to the overworked lung clinic in in Sydney and they are going go provide a script for pirfenidone which I’ll start shortly.
I was over due for a lung function test this week, but due to Corona this will be replaced by a telephone call.
Other than that all’s well in isolation, autumn weather here is just beautiful, a mate & I are ocean swimming ( at a respectable distance) every day.
Cheers
Mal
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Hi Mal,
So nice to hear from you – I hope you’re keeping well!
I’d be happy to start a “stopping OFEV” thread for you if you want to connect with others about this? I actually know of quite a few folks that had intolerable side effects as a result of Ofev and either went off the medication entirely as a result, or they switched to the 100mg dose instead of 150mg. I probably should stop this thread anyways, and start a second “Starting Ofev II” thread as this one is extremely long…
I’m glad the clinic issued a script for the other anti-fibrotic, that is good news. Have you started it yet? If so, are you tolerating it a little better? In those ocean swims, make sure you’re wearing sunblock on pirfenidone – it is very sun sensitive. Otherwise, enjoy!!
Take care and stay safe,
Charlene. -
Hi Charlene:
I had to scroll down today. Sa La Vie.
The diarrea won! Battled this one for 18 months but it seemed to get more frequent and i was coming off OFEV for 6 days at a time every 6 weeks. So Doc has taken me off for 3 weeks and will restart me at 100mg. Now i have to dispose of a full one and a half months of 15omg capsules. What a waste!
Take care of yourself.
Bob
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I started OFEV about 3.5 months ago!
150mg 2x a day!
So far so good, not many side effects to date.
I am anxious to get my next follow-up appointments in June, since April and May have been postponed due to Covid-19.
Maybe some of the results will show a stabilized pace.
But don’t be afraid of OFEV, it has fantastic reviews and results and stay positive.
Hope for the best and I wish you good luck and success!
Keep living and enjoying what you can each day!!
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Dear Bob
From another Bob. I like your positive outlook. I was diagnosed 8 years ago last February but I am very fortunate as I don’t exhibit the usual symptoms of shortness of breath etc. Have been on OFEV for 2 years in June and apart from diarrea (see my post a little earlier today) I have had no problems. I carry on a normal life including golf at least twice a week in summer here in Ontario and 3 times a week last Winter in Florida. I refuse to let IPF or OFEV rule my life and intend to carry on in that vein. You find find Charlene and the rest of the gang on here a good bunch and we try to assist where we can. Good luck and stay safe.
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Hello Bob Rawlins, thank you for your update. It’s great you are tolerating the Ofev. Take care, Mark.
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@bobb
Hi Bob!
So nice to hear from you. I trust you got home to Canada safe and sound from your winter away, ahead of all this chaos? I was flying home from California just as it started, and I am so glad to have made it back.Thanks for the update on Ofev, though so sorry to hear the side effects took over this time around. If it helps at all, I’ve heard a lot of patients having success with the medication after coming off it and starting at a lower dose (the 100mg) instead of the 150. I hope that is the case for you as well. In terms of the unopened tablets, can you connect with your physician about whether or not he/she can re-prescribe them for someone to use (if they are sealed)? It does seem like a waste doesn’t it? Though, not sure if even doctors can do that or not…maybe worth the ask! Take good care of yourself and stay safe.
Charlene. -
my doc gave the 150 mg to another patient.. the person was thrilled. He had met while waiting for script to come through
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Hi Charlene:
Thanks for your comments. California? You get around.
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Hi Thom:
Thanks for the info. Can I ask where you are? I’m in Canada.
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That is great to hear your doc could do that @thom – Im sure it was so greatly appreciated 🙂
Char. -
Hi @bobb ,
Lol, I sure do! I was in California with a pharmaceutical company developing a drug for the iPF cough (SCENIC trial) to celebrate Rare Disease Day in February. It was great, and I have some IPF awareness projects in the works from that trip, and can’t wait to share them with everyone once its completed. Stay tuned! 🙂
Char. -
Sorry. I should have mentioned. I live in Connecticut, USA
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