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    • #24509
      Malcolm Mann
      Participant

      Hi I was on Ofev for 15 months, I had major problems with side effects, at my Dr’s suggestion I reduced the dose from 150 mg twice daily to 100mg x 2, but I still was not coping well. I was placed on several 2-3 week pauses in taking the drug, I suffered from irregular diarrhea, with the occasional, (as they used to say in the army,) unauthorized discharge. My wife also noticed changes in my personality, when on the medication which seemed to revert to normal when on the authorised holidays. Quite often I would have what felt like a hangover (or a dull heavy feeling) with no known cause.

      In late April after the another episode in no bowel control, I gave up and asked my medical advisers to switch me over to Esbriet. I had been averse to switching to Esbriet because of the potential sun exposure problems, as we live by a beach and I spend a inordinate amount of time outside in the sun, and I really enjoy ocean swimming (which I can still do slowly despite breathing difficulties).

      Since changing to Esbiriet, I haven’t looked back, while it is approaching winter here in the southern hemisphere there is still plenty of sun around and I haven’t had a problem. I haven’t had any intestinal issues and I feel better in myself and even perhaps calmer.

      I know it is early days, I have only been on Esbriet for 6 weeks, but I feel great really and am looking forward to my next PFT’s whenever the doctors reopen there doors again, telephone consultations only here at the moment.

      Cheers Mal

    • #24510

      Hello Malcolm,

      sounds great you got rid of Ofev’s side-effects. I’m on Esbriet since June last year and my main complaints (after titrating and reaching full standard dose of 3 x 800mg daily in late July) were heavy stomach, slight nausea, tiredness and -worst of all- headaches. The MD recommended reducing dosage and I have finally settled on a 2 x 800mg protocol. Most side effects have been dealt except for the headaches that still pester me and a slight muscle heaviness for a few hours after the dose.

      I live in Greece and sun is our middle name, so I was expecting strong dermal reactions on UV exposure but fortunately there was only minor eczema-like redness after spending more than 1/2 hour unprotected under the sun. So I went for a very gradual resistance and tan buildup by slowly staying for longer times under clear a sky UV exposure but not the direct sunlight. Eventually it seems my skin got “acquainted” to this and I get no more reactions worth mentioning.

      I hope these notes are helpful,

      God Bless

       

    • #24529

      Hi Mal,

       

      I am so glad to hear you’re benefitting better on Esbriet than Ofev! I remember Ofev being really tough on you from your previous posts, so that is great news you’re tolerating Esbriet better, even 6 weeks in. Glad you aren’t having any sun sensitivity issues either, I know that is important to you with being in the beautiful land of Oz. Take care and keep us posted, what great news to hear that the switch has been a lot better for you 🙂
      Charlene.

    • #24532
      Malcolm Mann
      Participant

      Hi Michael &Charlene

      Thanks for the encouraging thoughts, I’m very happy with the change, but not counting chickens just yet.

      I had been dreading the sun exposure effects, but so far there have been none. I am using more sun block, and my skin is fairly impervious to sun damage, ie the damage has been done decades ago.

      My normal dress is shorts and tshirts for much of the year, so that may have to change next summer.

      Cheers

      Mal

    • #24556
      Tom Nicholas
      Participant

      @mal-com

       

      I’ve been on Esbriet for 3+ years. My understanding is the sun effects happen in the first 3-6 months. I did have a problem with loose stools as I went to the full dosage. A tip given to me on this site resolved vthe issue. I had probiotic yogurt every morning for 2 weeks, problem solved. I still have the yogurt several times a week. I used Activia yogurt, it actually was like a dessert for me. Good luck!

      • This reply was modified 3 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #24565

      So glad to hear this Mal! I know how  much you value your ocean swims 🙂
      I will keep my fingers crossed that the benefits and lack of side effects continue for you!
      Charlene.

    • #24598
      Lou Body IV
      Participant

      My experience with Esbriet and sun was like Mal’s and Tom’s for awhile. In other words, no problems. Then, all of a sudden, boom and my forearms incurred a rash of monumental proportions. The itching just drove me crazy. Until you get the itching you just don’t know how bad an experience it is. Sleep is reduced to nothing. You cannot stop itching every second you’re in bed. It took 3 months to get over it. That’s 3 months off Esbriet. I’ve learned many people don’t get a reaction right away. When they think they are immune, all of a sudden it hits and it is awful. Please keep my experience in mind and don’t for a minute let your guard down. I wear sleeves, knee high socks and a bucket hat now whenever I am in the sun. I will do anything not to have that itching, raw skin.

      Lou

    • #24599
      Mark Koziol
      Keymaster

      Hello Lou, thank you for sharing your experience. What I read from you is exactly the reason why I chose Ofev. I like to be out in the sun and I figured I could weather the gastric storm caused by the Ofev medicine. Now since my transplant I am 70% more inclined to get some sort of skin cancer because of the prograf and prednisone medicines. I love my collection of bucket hats. Thanks again, mark.

    • #24623
      Malcolm Mann
      Participant

      Hi everyone and Lou and thanks for the warning, I’ll keep on guard. Our next few months are our coolest and I’ll keep covered. As the warmer months return I’ll switch over to long armed tshirts, I have a wide brimmed cattlemans hat for beach walks etc.

      I was in Vietnam 20 years ago and suffered from sun over reaction because of the anti malaria medication, not so much a rash but severe sunburn.

      I’ve been on Esbriet now for 2 months and no really adverse side effects, other than lethargy, but that may just be the IPF.

      Cheers

      Mal

    • #24644

      Keeping my fingers crossed that this continues to go well for you Mal!
      Cheers,
      Charlene 🙂

    • #24707
      Wayne Smith
      Participant

      Like Lou Body IV I thought I was lucky enough not to have the reaction to the sun. Lou’s post seems to confirm my suspicions. I had been on Esbriet for a bit over a year and a half with no noticeable sun effects. Then, after a day working outside, a hives-like rash appeared on the backs of my hands (which were basically the only unprotected skin showing). It became very itchy and remained that way for quite some time. I didn’t immediately relate it to an Esbriet side effect and tried various treatments including aloe vera and vitamin A ointment. I tried a cream my daughter had that was supposed to be good for eczema but had to wash it off a couple of minutes after application because it was stinging so much. About 3 months later it is almost cleared up but I have to apply (paw paw) ointment to overcome the dryness. I won’t be taking chances again! I even bought a pair of fingerless sun safe gloves, particularly for driving.

      My most consistent problem with Esbriet is a nagging mild nausea that comes and goes. At times I just don’t feel like eating because nothing seems to appeal. I eat because I have to have the pills with food. Has anyone else had and overcome the nausea challenge?

    • #25523
      Malcolm Mann
      Participant

      Hi all, here is a 4 months down the track report on my switch to Esbriet. I’m still tolerating it well, with no great GI issues, I have had no food intolerance problems and my weight has remained unchanged.

      I have developed a dislike for beer, wine or cider are still tolerated. I find the Esbriet increases the sedative effect of alcohol, so much so that instead of partying on, I tend to pass out. That could also be in combination with the Esbriet/IPF inspired fatigue.

      My ability to exercise continues to slowly deteriorate, I’m lucky, my brush with this disease is still at the easy end of the scale. I used to to do triathlon, and be somewhere in the middle of the pack, I’m just walking/waddling along slowly now at my own lethargic pace, it’s still good though, not complaining. I’m still keeping up with the slow swimmers in our Sunday surf club swim.

      We’re approaching spring and summer, I have not had any sun issues with Esbriet, I have been getting a lot of exposure with no adverse reaction so far, strategy plans in place if the sun becomes a problem

      With the covid disruptions I haven’t been able to get a PFT this year one is planned for later this month.

      Initially I was scared off from using Esbriet, but I have found it very easy to tolerate, and a lot less difficult compared how I fared with Ofev.

      Cheers

      Mal

    • #25527
      Rene Hakkenberg
      Participant

      Hi Mal,

      I was on Ofev on and off for two years (2018 and 2019). I had major side effect problems, just like you, and lost 14 kg on an already slim frame. During these 2 years I stopped taking Ofev a few times, on doctor’s advice and then would restart with lower dosage to build up slowly to 2x150mg. The bad side effects persisted but my PFT’s and CTscans showed that my IPF was stable.

      Early January 2020 the doctor switched me to Esbriet, despite the fact that I live in the tropics with lots of sunshine. I have tolerated Esbriet very well, no sun rashes and the only problem is lack of appetite. HOWEVER, my PFT and scan this year showed a noticeable decline in my IPF which was already clear to me due to worsening SOB.

      As a result my doctor now wants me to go back to Ofev. I have not yet decided whether or not to follow this advice.

      I thought this might interest you and I certainly hope you don’t have the sane experience as I have with worsening IPF under Esbriet.

    • #25533
      Malcolm Mann
      Participant

      Hi Rene I,ve responded twice both times the system has eaten my reply

      Cheers

      Mal

    • #25539
      Malcolm Mann
      Participant

      Make that 3 times, I wrote a half a page, hit submit and got an error message “are you sure you wanted to do that?”

    • #25541

      Hey @mal-com ,

      Thanks for writing and letting me know about this error, though so sorry it happened – especially after what sounds like a very thoroughly reply. How frustrating! I’ll make sure your username is on our ‘whitelist’ of approved messages. You should be already, but sometimes the platform mixes up or flags users from posting for no reason. I’ll have our tech team look into it, along with the error message.

      If you still have it, I’m happy to post the reply (verbatim) on your behalf if you’d like? Please let me know.

      Take care,
      Charlene.

    • #25543

      Hey @mal-com , our tech team just refreshed your username to ensure it is ‘whitelisted’ meaning no posts should be held. Let me know if the problem is fixed when you try to post 🙂
      Sincerely,
      Char.

    • #25544

      Thanks so much for the update Mal — as always, so nice to hear from you! Are you still able to swim in the ocean (my fave place in the world!) regularly on the Esbriet and with your IPF fatigue? If so, take a dip for me please! I would imagine the salt water is good for you  physically, but I imagine it is for your mental health as well. I’ll be at the ocean this time next week, and can’t wait!!! Char.

    • #25548
      Jess Schroeder
      Participant

      I wanted to share my experiences, as they may be of some help to some.

      I was diagnosed with IPF about 3.5 years ago and have been on Esbriet for about 3 years.  I chose it over OFEV because I was concerned about the reported side effects being worse for OFEV, as well as potential Stroke (per literature I was given).  Within the first year, I had several side effects.  The stomach/gastro-related effects tapered off and I have had none for over 2 years now.  I did have some side effects of itching and loss of sleep.  I was reduced to smaller dose for a month and added “Hydroxyzene” to daily meds.  It acts somewhat like Benedryl and helped address both itching and sleep.  I also returned to full dosage of Esbriet with no further issues.

      My appetite has reduced somewhat and I have actually lost about 30 pounds while on Esbriet (which was a welcome loss, since I needed it anyway).  I have maintained the same weight now for about 1.5 years.

      Re: sun exposure, I love to play golf and have not had to give it up.  I have been careful to wear long pants, long sleeved shirts, a hat, and SFP 55 sunblock.  No issues with that.

      Excercise has been a huge factor in my feeling better and breathing better.  My pulmonologist had me start a Pulmonary rehab/excercise program at a local; hospital.  I went 3 times/week for 3 months and then changed to a program of twice per week.  That continued for nearly a year before COVID-19 caused the facility to shut down.  The Rehab center has not started back up yet, but I stay active by walking about 1.5 miles per day, ride a bike occasionally, mow the lawn, and of course, play golf.

      My main issue is a wet cough.  I have a bad bout of coughing every morning for about 30 minutes and most nights when I first go to bed.  The pulmonologist has told me there isn’t much I can do about it and I need to get the fluids out to avoid pneumonia.  So, I just go with it.  I do get some occasional help by taking over the counter Mucinex.

    • #25549

      Hi Jess,

      Thank you so much for taking the time to write this out for us and share your experience with Esbriet. I have no doubt it will help others who are considering starting this drug, or who are struggling with it.

      I’m really glad the GI issues haven’t been problematic in the last couple of years, and that the side effects seem to have settled after 1 year. Also thrilled to hear you can keep golfing, these things are important for our quality of life 🙂

      Thanks again, I know this will help others and I appreciate the time you took to write this out for us, sharing your experience. Keep in touch!
      Charlene.

    • #25550
      Malcolm Mann
      Participant

      Thanks Charlene @charlene marshall

      Enjoy the ocean, swimming is good for the soul.

      I have always swam and done age group competition, over the last 5 years I’ve worked out how to keep swimming with reduced lung efficiency. The main thing is I don’t kick, the legs just come along for the journey. Not kicking means you need a wet suit to maintain a horizontal position in the water. I concentrate on getting the arm strokes as smooth as possibly to conserve energy. The comical bit is after I stop swimming it’s all up hill, no sprinting up the beach for me.

      The local surf club has a 1km beach swim on Sunday mornings, we get around 30 swimmers aged from 10 to 80, it’s still a bit chilly(16c) but summer is approaching fast.

      Cheers

      Mal

       

    • #25551
      Malcolm Mann
      Participant

      Hi Jess

      Thanks for your reply, like you my cough is a major concern, exactly as you described, and it can result in headache.

      I bought a small open sports car, (1990 Mazda Miata, MX5) as motorcycle replacement therapy, 3 months before I started Esbriet. Not a good move to avoid sun exposure.

      I’m now buying long sleeved t-shirts for summer, plus sun block. I’m 70 and have worked outside most of my life, commercial fishing, tug boat skipper etc. My skin has proved to be pretty impervious to the suns damage, pre Esbriet I’ve never used sun blocks, I now have a large container at the front door, & in both cars ready to be smeared on at a moments notice.

      Agreed on exercise, apart from walking and swimming I go the the gym twice a week, strength and an aerobic session on the rowing machine. Where we live is an exercise regime in itself, we have a steep block, there are 40 steps from the bedroom to the chook house down the back yard. Chicken house for those perplexed.

      Cheers

      Mal

       

    • #25552

      Hello Group,

      Interesting finding so many similarities but also differences between our personal IPF  journeys here. I’ve been on Esbriet ever since the diagnose last year (early 2019) with some “annoying” side effects. Fatigue, Headaches, upset stomach with some loss of appetite, occasional nausea and dizziness, some skin irritation…

      I do breathing and physical exercises almost on a daily basis for rehabilitation as it has helped. Constant dry cough is my companion, especially after exercise or a meal. I do take plenty of nutritional adjuvants (VitC, D, Zinc, Serrapeptase, Nattokinase, herbal teas, Homeopathic remedies, etc…)

      After the first six months on Esbriet, I had to scale down from the full  2403 mg/day dose (3x801mg) to 2x801mg/day and some times only one 801 pill, especially when I’m trying to do some outdoor activities… The good news is that my latest CRT and spirometry & PFT test showed steady parameters (even a small improvement in some) from the last test 6 months ago.

      The point of it all is to delay as much as possible the scarring process, until a potential cure -hopefully- comes along: https://medicalxpress.com/news/2019-09-treatment-pulmonary-fibrosis.html

      Keep fit and God Bless

       

    • #25557
      Malcolm Mann
      Participant

      HI Michael
      Yes we may have the same disease but there is a wide range of effects, in my case the movement of air in and out isn’t too bad but the diffusion (the exchange of oxygen from the lungs to the blood supply) is quite restricted.Lung function tests next week, first in 10 months.
      I took the dogs out yesterday for a walk along the beach, I forgot to put on sunblock, I noticed the first signs of a rash on the face starting last night, I’ll be more careful from now on.
      We’d love to visit Greece, if ever this world return to some semblance of normal.
      Cheers
      Mal

    • #25558

      Hello Malcolm,

      indeed every person has different reactions, symptoms and progression scale. All I can say and do is patience (we’re “patients” after all) New therapies are surely on the way, so just try to hang on there!…  It’s really beneficial to keep active as much as possible, especially if Esbriet drags you down and induces horrible fatigue, as is in my case. Add to it the covid19 compulsory lockdowns and you have a perfect brew for  lack of mobility and staleness!… so keep exercising those muscles. BTW, one of the reasons I avoid going about town on errands, shopping, etc, as I used to, is not so much covid fear as the fact that I can’t stand a mask on my face because it restricts air inflow and feels suffocating, especially when it’s hot out there.

      Keep fit and God Bless,

      and as it seems this is now becoming the “new normal”, why not come to Greece next year!

       

    • #25559
      Rene Hakkenberg
      Participant

      Question, which may be of interest for others:

      If one of the two anti fibrosis medicines does not stabilize the disease does it make sense to try the other despite side effects?

      My case: Tried Ofev off and on for 2 years with bad  side effects such as diarrhea and weight loss but my IPF was stable. Then, because of Ofev’s side effects, my doctor switched me to Esbriet. Esbriet side effects were tolerable but my IPF worsened and the doctor switched me back to Ofev and told me to live with the side effects.

      Have any of you found that one of the two medicines was effective in fighting the disease but the other was not?

    • #25564
      John
      Participant

      Thanks all. I haven’t yet taken the plunge, so these discussions are helpful.

      John

    • #25597

      Hello from the pacific coast of the US @mal-com. Thank you for sharing — your swimming routine sounds amazing, and I’m so glad you’re still able to do this. I look forward to getting in the ocean really soon and seeing how/if it helps. I know it will help my spirit and mental health if nothing else, its my favourite place to be 🙂

      Char.

    • #25598

      @renehakkenberg

      Hey Rene,

      Our friend @mal-com had a hard time getting this reply posted to you because of the silly forum issues! I said I’d post verbatim on his behalf while we work to get the issues fixed. Here is his reply to you:

      “Hi Rene
      Where about are you in this weird world, I’m in a little beachside village called Tomakin on the NSW Australian South Coast.
      This disease effects us all differently, my pfts were continuing to decline, even on Ofev 100mg’s twice daily. My Pft results come with a nifty graph which shows a steady decline from the time of diagnosis to present. Because of this continuing decline my pulmonary specialist suggested switching to Esbriet last year. I resisted for 6 months as I was apprehensive of the sun exposure problems, as my normal attire is t shirts and shorts.
      After further GI problems, I decided to stop Ofev. The specialist and the Interstitial Lung Disease Clinic I visit in Sydney were quite happy for me to switch over. I’m on a military pension, but there is no cost for either drug here in Australia.
      I wouldn’t consider going back to Ofev, I know plenty of people have no problems with Ofev, but for me the side effects outweighed any benefit.
      cheers
      Mal”

    • #25599
      Mark Koziol
      Keymaster

      Hello Michael, thank you for sharing your experience with Esbriet. Your insights on how you adjust your dosage is informative for others who are going through some adversity while on esbriet. It is also great to hear you are remaining stable with a slight pft improvement. Take care, Mark.

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