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Starting Ofev
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Test again why oh why cant I post
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Hi @mal-com,
I think you’re doing everything right – I am seeing your posts 🙂
Charlene.
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Hi Charlene I seem to be only able to post one liners, a few lines gets an cant post now message?
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Hi @mal-com,
Oh, that is really odd, so sorry you’re experiencing this! Let me ensure I understand, so I can try my best to resolve it for you. You can type a couple of lines within the text box, but then do you receive an error message? Any chance you could try on a different browser on your computer, just to ensure it is a problem on our end? As an example, if you use Google Chrome to open up internet pages, could you try on Internet Explorer (for Windows / PC computers) or Safari if you’re using a Mac. Sometimes the browser if not updated can cause error messages. If the problem persists, we’ll work through it together. I’ll ask our tech team in the meantime, and see if they have any suggestions. I’ll get back to you shortly!
Thanks,
Charlene.
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Hi Marie:
I hope you get this. I received a friend request from you but i’ve been away and when I tried to acknowledge it, it had disappeared. If you want to send it again i’ll be glad to accept.
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Hi Charlene:
Been away…actually up in Hamilton Ontario for a few days. Used that new no frills airline Swoop owned by WestJet. Went through the worst nightmare flights due to weather and maintenance problems. Not all Swoops fault. But Hamilton airport is a disaster for passengers. Will never use it again if nothing changes.
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Hi Bob,
Nice to hear from you, although sorry the flight and airport was such a disaster. I can only imagine how chaotic the airports were around here the last few days, there is so much ice everywhere! Typically I enjoy WestJet flights and have used Swoop with no issues, but it wasn’t in the middle of an ice storm either. Are you back safe and sound now to sunny Florida?
Enjoy!
Charlene. -
HI Charlene and others
I’m a 69yo Australian man, diagnosed with very mild pulmonary fibrosis in 2015. I have had more breathlessness since mid 2018, my condition was confirmed as IPF in Feb 2019 after a squillion tests and biopsy, started Ofev 8th Feb, a month ago.
The decision of which anti fibrotic was entirely left up to me, I chose Ofev because of the sun sensitivity issues with Esbriet. The cost is covered by the Aussie Govt here.
I have had some of the mentioned side effects, diarrhoea, stomach ache but certainly not to any great degree, a mild inconvenience if any. Including a couple of hurried visits to the closest loo. I believe, I have become more sun sensitive than before. I’m able to do ocean swimming, up to 2 km races at a modest pace which involves a lot of sun exposure, we live in a beach village. I am using a hat & sunscreen everytime I venture out now, a first for me.
cheers
Mal
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Hi Malcolm,
Thanks so much for writing to us, and welcome from up north here in Canada! I visited your beautiful country three times between 2015-2016 and absolutely loved it. Where abouts in Australia are you from? I spent time in NSW, Victoria and South Australia.
Glad you seem to be tolerating the Ofev fairly well, or at least as expected, since starting it in early Feb. I don’t have any experience with Esbriet but I’ve tolerated the Ofev quite well, fingers crossed. Glad the government will pay for the anti-fibrotic for you, that is great news and I think I’d worry about the sun exposure on Esbriet as well. Did you get any other medications with the Ofev to help reduce any of the unpleasant side effects, like a stomach coater? Some people get that and others don’t it seems….
Oh the ocean, I am just so jealous of your easy access to the sea. That is where I feel most at home! Enjoy that sun (with proper precautions) and warmth too!
Warm regards,
Charlene.
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@Mal-com
G’day Mate! – Steve here in Virginia USA. I was originally diagnosed in Oct 2016 in Manila and returned to the US in April 2018. O2 went downhill since returning but I declined the two western meds and opted for pulmonary PT, supplements and class IV laser treatment. The supplements alone changed my O2 prescription from having portables whenever needed to only at night with my new CPAP home machine.
The laser by many accounts stops the progression. A doctor, Dr. Andrew Hall, recently joined us here and has self-treated with a K-laser class IV specific protocol over 4 years. He is in Sonora, CA and a very good and helpful man. Get in touch with him and see what he has to say. I started the laser just a week or so ago and do feel more energy. Also looking forward to my next round of tests and CT scan to see what they show.
There is a lot of good information on this forum in many places and IÂ believe it is the most active of any type of lung diseases – especially member interaction.
Enjoy! – Steve
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Wonderful summary of our amazing online community Steve, thanks so much for your reply to Malcolm! I wonder how much laser therapy options are available ‘down under’? Definitely something for him to look more into if interested. Thanks again for connecting back with him, and sharing such useful information. I hope you’re having a nice week!
Charlene.
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Hi Charlene and Steve
Thanks for your responses.
Steve In the 90’s I had laser treatment for planter fasicitis in both feet, which is notorously untreatable successfully, the laser cured it and I was able to run for another 25 years.
We live in a little village, Tomakin 300km south of Sydney, and 160km from Canberra. We are surrounded by beautiful unspoilt beaches & forests, generally without crowds of people.
I notice that while the northern US & Canada have had harsh winters (my daughter is in New York I get full reports) we suffered through a really hot January , the hot weather really knocks me around. When the temperatures are in the C 30’s (F 90-100+) my breathing becomes much worse and my walking even slower, is this to be expected?
The only additional medicine included when I started on Ofev was a packet of Imodium, which I thought not a good sign.
The Lung clinic in Sydney is running a blood test trial for those on Ofev, where changes in genetic markers are analysed in a sizeable trial group, blood samples are taken every 3 months.
Thanks Charlene for the great job in keeping this forum running, it good to know we’re not alone
Cheers
Mal-
Hi Mal,
So nice to hear from you, thanks for your reply and sharing a bit more about you and your experience with Ofev.
I had no idea laser could be used for plantar fasicitis Mal, but that certainly makes sense! Glad it was effective and you could continue running, wow, good for you. Might you try it for your lung disease management, do you think Mal? I know lots of folks are exploring it and finding it beneficial thus far.
Where you live in Australia, sounds beautiful! I just posted a photo of one of my favourite spots on the northern beaches coast of Sydney. Marsha and I have been talking about just how amazing it would be to meet for coffee there. Its so nice to dream, isn’t it? 🙂 I have several friends in Australia, who mentioned how hot January was there, they said they had trouble breathing and don’t have any type of lung condition. I am also bothered by the heat Mal, especially temps 30+ Celsius. Unfortunately, I think this is normal for many living with this lung condition…
Really glad you’ve found our site Mal, it is nice to know we aren’t alone and that an online platform can bring us together from all different parts of the world.
Take care, and write anytime!
Charlene.
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Hi Malcolm Mann, 81 yr old Karl here, diagnosed with “mild” IPF Aug 2018. CT scan for kidney stone in 2008 picked up lower lobes and showed some un-diagnosed scarring that appeared in 2018 CT scan that resulted in my IPF diagosis, therefore I’ve had IPF for 10+ years. Like you I’m very active. IPF is not really slowing me down — yet.
My message to you: Keep up the ocean swimming! I completed 24 sessions of pulmonary rehab and now I’m doing active exercising in a gym 3 times per week and feeling noticeably stronger with far less breathing difficulty than when I was inactive and diagnosed last year. I fully expect a good outcome from my next breathing function test this coming March 25.
Stay as active as you can my friend. Keep the endorphins going. Helps maintain a positive attitude too.
IPF is what it is.
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So glad you’re noticing increased strength and less breathing difficulty with your exercise regimen Karl, that is excellent! I sure wish I could do some ocean swimming, can only imagine how good the salt air is, paired with the breathing that swimming requires, for our lungs. I used to be a competitive swimmer, and really miss it. I suppose I could try less strenuous swimming and more for leisure, to see how I tolerate it. Thanks for the idea!
Take care Karl.
Charlene. -
Charlene Karl
Thanks for the responses, the lung clinic here recommends as much exercise as you can comfortably achieve.I’m very lucky they found my fibrosis early too, in some ways I’m here under false pretences, I can do anything I need to, at my pace.
I can no longer run (because of arthritis), but I do a gym workout 3 times a week, walk(slow) and swim 4 or 5 times a week year round
I’ve always been a swimmer, I did triathlons for 10 years, the secret to swimming with fibrosis is to wear a triathlon wetsuit, which keeps you bouyant and floating high and flat. So much so I dont have to kick at all, saving a lot of energy by not using those big leg muscles. Since my breathing deteriorated last year I have changed how I breath while swimming, I used to breath every 3 strokes, bi-laterally, lately I have been breathing 3 on the left and one on the right, so getting more breaths in.
My local surf club “Broulee” has its annual “Bay to Breakers” ocean swim next Sunday, 1.4 km or there abouts I have done everyone since they started 8 years ago, it will be interesting to see what time I can manage this year.
There is a nice little youtube video of my backyard, a) if I’m allowed to post links here b) if you’re interested, look up “Tomakin River from drone”.
Cheers
Mal-
Hi Mal,
Thanks so much for getting in touch, it is lovely to hear from you. I am really glad you’re still able to do everything you love, but at your own pace, that is wonderful. I hope this lasts for a lot longer 🙂
Really interesting to hear your thoughts on swimming, and what makes that task easier. I also used to be a competitive swimmer and really miss this. I’ve even been afraid of swimming for leisure since my diagnosis, although I will still do this while on vacation or when staying in a hotel, etc. Thanks for sharing the tip, I’ll consider this if I start lane swimming again, which I’d really like to do. I will definitely be swimming in the ocean in Hawaii as well when I visit in September. I can’t wait!
Thanks again for sharing, and goodluck with your ocean swim next Sunday! If you think of it, please report back on how it goes, I’m curious to hear and I’ll definitely check out the YouTube video. Anything to help me dream of warmer weather, it is still so cold here!
Cheers,
Charlene.
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Hi everyone.
I’m 62 and I live in Cairns, Qld, Australia – right on the Great Barrier Reef. I was diagnosed with IPF in October 2015. I started Ofev in December 2015 (one of the earliest Australians to start the medication) so I’m a little over 3 years now. I’ve had a few ups and downs with diarrhoea and mild nausea but have finally settled into a routine and it’s all looking good.
Kind regards, Debbi
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Hi Debbi,
Welcome to the PF forums, and thanks so much for sharing a bit of your story with us!
First of all: oh gosh, I am so jealous of where you live! The Great Barrier Reef is on my bucket list, and I know I am running out of time to visit it (aside from also having a terminal lung disease) due to it rapidly dying off. The scenery around your home must be just beautiful? I visited Australia three times throughout 2015-2016 as I did my Master’s degree through Melbourne Uni, and it was actually atop the Sydney Harbour bridge when I climbed it that I knew something was indeed wrong with my lungs. I flew back to Canada shortly after that and was diagnosed with IPF.
I am also on Ofev and the start of the drug was a bit tough, but seems I’ve adjusted well to it now, kind of “getting into the groove” I guess. Glad the side effects are tolerable for you as well. Are you happy with the care and knowledge of PF specialists in Cains? This isn’t something I’ve heard much about, but have spoken to folks about the great care in Sydney and at the Alfred Hospital in Melbourne too. I hope to get back to Australia in the next few years!
Take care,
Charlene.
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@Debbi
Hi Debbi,
Steve here in Virginia, USA. I was in the Philippines when first diagnosed w IPF early October 2016. After returning to the USA in April 2018 I did various tests here to confirm IPF. Pulmonary PT helped and started me going back to the gym. Tried various supplements but settled successfully on serrapeptase, astragalus, a good B vitamin complex, D3/ K2m7 vitamins together (been taking these a few years and recently increased D3 dosage), and K-laser class IV treatments.
Laser and serrapeptase have definitely helped the most. We have several forums here and you may want to look at Laser and Laser II. Several others are looking at specific herbal mixtures -WEI institute being the main one. Also, there are various clinical trials underway and at least one looks promising.
Hope you will find your membership into our exclusive club a benefit as many others have. – Steve
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Couldn’t have said it better myself Steve, thanks for the warm welcome for Debbi and outlining some of the most helpful / popular topics on our wonderful forum community 🙂
Charlene.
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I just posted something and now I think it disappeared. Oh wait a while and see if it reappears
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Hi Thom,
Did you find your post? I’ve “approved” any topics/discussions that required moderation so it should have reappeared for you! If not, I’ll take a look on the back-end, just let me know as we value all contributions to this site, and the effort that members take in writing to us.
Take care and enjoy your Saturday!
Charlene.
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Hi Steve,
Thanks for the info. I’ve read quite a few of your posts and will look into it a bit more.
At the moment I just walk on my treadmill for 20 mins daily in air-conditioned comfort because it’s a bit too hot to walk outside. It’s our summer and we’ve had quite high temps and high humidity.
I did the Pulmonary Rehabilitaion course in 2017 and made some great friends. We started a Social and Support Group as there wasn’t one in Cairns. Not many here with IPF either so it’s for all lung conditions.
I’m looking forward to meeting you all.
Debbi
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Hi Debbi
I’m on the NSW south coast and was also diagnosed in Oct 2015 with mild PF, as all the LFTs were normal then they didn’t do anything other than watch & wait, I went onto Ofev recently after some deterioration.
Jan & I will be in Cairns in May on our way to Port Douglas for the hash house harriers (weird running group,no running for me) bi-annual national event.
Welcome to this site, I’ve only just got here myself, here you realise the full impact of this insidious disease.
Cheers
Ma-
@Debbi
Hi Debbi – thanks for your kind words. I, fortunately, stumbled across this terrific forum and groups and people searching about IPF since modern medicine has very little answers.
The good people here know and understand intimately what we are experiencing and will help us through. For some, it is a reality call at first but once that is adjusted to the mask can be dropped and deep experiences shared. I still look for my mask sometimes but it is good to better know where I am headed what will happen. Sorta helps create any urgency about life and be an effective witness thereof.
Lots of folks have very good and interesting posts and exploring them all when you have time will be a benefit to you and your loved ones. I have shared a few videos and forum posts with my wife. We have been apart a year and when I return to the Philippines she will not be getting back the same man that left. – Hopefully, his name will still be Steve though. hahahahah Enjoy – Steve
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Hi Steve,
I will admit to a bit of stalking before joining in and I quickly realised this was the place for me to be. I have wonderful support from my husband, children and sister but I think you sometimes need to speak to someone who is going through it too. I’m reading some of the back topics and can relate to a lot of them.
I hope you get back home soon.
Regards, Debbi
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I was diagnosed in October with ipf. I retired after 53 years I am self-employed, 5 days later I was told I had ipf not the news I wanted to hear. I am on my third pulmonologist I had to search for someone that I felt comfortable with. I was first prescribed with esbriet the doctor I am with now said I would be better off with ofev. I started ofev yesterday for the first time. My doctor recommended I go for a few tests before I begin taking the medication. I am happy to say that’s so far I feel okay no stomach cramps no diarrhea no vomit although I’ve only swallowed 3 pills so far. The medication is just over $10,000 per month for 150 mg. Fortunately my insurance is picking up the tab. Ironically I changed Insurance just a few weeks before I was diagnosed. I will keep everyone informed as to how I’m doing it’s nice to have a place to go.
One question for anyone on the site there seems to be a lot of advertising and I’m curious who owns and runs this website.
Thank you all for listening warm regards. Thom
A short PostScript. I saw my doctor the other day and mentioned to him some of the different remedies that are mentioned here. I mentioned the cold laser serrapeptase and also collodial silver. His reply was unless it’s FDA approved he is not interested, it’s about what I expected. so I told him when I return don’t be surprised if I am wearing a necklace made of garlic. I’m sure my grandmother would have approved!
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Hi Thom,
Thanks for sharing a bit more about your story with us! I am glad to hear that you continued to look for physicians you were comfortable with, that is so important and something we often forget that we’re entitled to. This is something I learnt from a late friend of mine who passed away from Pulmonary Hypertension: keep searching until you have a doctor you’re most comfortable with!
Really glad that so far you’re adjusting well to the Ofev, that is good news and I’ll keep my fingers crossed that it continues for you. Was there any particular reason the one physician recommended Ofev over Esbriet? I’m always curious to hear this from different doctors, not entirely sure why.
Regarding the advertising, I am hopeful you’re only seeing our partnership advertisements Thom. Who/what are you seeing adverts about? I’ll confirm whether or not you should be seeing them and if any are spam, I’ll shut it down. Bionews is the company that owns the forums and PF News. Hope this helps!
Sad to hear your doctor’s response regarding the FDA approved options only, but yes, somewhat not surprised…. glad you’re continuing to your own research too! Feel free to write anytime Thom 🙂
Charlene.
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@Debbi – I know what you mean – I observed a while before commenting…
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Hi Mal, ( @mal-com )
My apologies. I did reply to you but it seems to have disappeared.
Cairns in May is the best time to be here. Can we meet up while you’re here or are you staying in Port Douglas? My e-mail address is [email protected]
Regards, Deb
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Hi Debbi @Debbi Rummery
We’re on a package deal & fly to Cairns, then transfer to Port Douglas probably shortly after arrival, I dont know how much time we’ll have in Cairns this time, but literally I know of only one other person with this insidious disease here, we’d love to be able to talk with others with this problem.
We normally spend a bit of time in Qld caravanning for 2-3 months over winter most years, but this year we’re only doing a house sit in Brisbane and another in NZ.
Back to topic, the stomach ache and diarraeah does tend to take your mind off the fibrosis. I was side effect free for the first few week, now after 6 weeks they are my constant companions. I haven’t worked out what to avoid yet.
Cheers Mal
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I have been on OFEV for about 10 days 150Â mg two times a day. So far no side effects absolutely zero. I hope it stays this way time will tell.
Thom
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Definitely keeping my fingers crossed that it remains this way for you @thom! I am lucky to report that I didn’t have a lot of trouble when starting this drug either, just occasional discomfort but not even enough for me to know whether it was the Ofev or something I’d eaten – that is how sporadic it is. Will be thinking of you and hoping you remain side effect free. Thanks for the update!
Charlene.
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