-
Starting Ofev
-
Thanks Mark, Bob and thanks for passing Bob’s post Charlene. The first night went ok. I did have to get up frequently for Diarrhea. Before work I took some Imodium before leaving the house. I was worried about how I was going to do at work, but I drank some orange juice and ate a banana, took my capsule (I am on 100 mg) and then ate another banana and washed it all down with water. I was fine all day other than having to pause and remind myself to slow down. Tonight I had something to eat as soon as I got home and then ate when I took my pill. I take mine at 7 PM because I go to bed at 8 PM and get up at 4:45 AM. I then take my morning pill at 7 AM while at work. I’d like to thank you all for sharing. It looks like there are a lot of differences in people’s experiences, and I realize it might take me a little while to find what is best for me. Thanks again.
-
Hello Andrew, I like the idea of eating a banana with your meds. I currently do this with my transplant meds. I’m glad the first day went well for you. This is a good sign. Best wishes, Mark.
-
-
Thanks Mark,
So far I have not had anything bad like diarrhea after the first night. I did have a little cramping in my hands but drinking more water took care of that. I still take the OFEV with a banana, but only one now. The banana’s were giving me too much gas ( a little embarrassing). I am glad that I made it through the week with no major issues at work or at home. Have a great weekend.
-
Hello Andrew, I forgot about the cramping the Ofev caused. Your statement just reminded me. I drank water to combat this side effect and always had Gatorade on hand for the extra electrolytes. The several times I battled gastric distress i used pedialyte. You have a great weekend as well. Mark
-
-
Thanks Mark,
I always drink a lot of Gatorade, sometimes instead of water. I guess if I cut down a little on the Gatorade and coffee, and drink more water I should be fine with the cramps. I’ll keep the Pedialyte in mind if I get gastro problems again.
-
My dr. has never discussed my degree of fibrosis with me. I was diagnosed 3 months ago. I suggested the Ofev since it is only 2 pills a day. I have been taking it for 6 weeks. I have IPF.
I have many side effects. The diarrhea is horrible. I have little appetite and things taste strange. I also have sweats and chills. This coupled with the fatigue makes it hard to carry on. I may ask my dr. to lower the dosage.
-
Hello Jean, you are well within your rights to ask your doctor any question pertaining to your diagnosis. Please ask your doctor about the severity of your ipf. Ask your doctor about reducing your dosage. Many patients reduce from 150 mg to 100 mg per day. Members have also made suggestions on what they do to alleviate the side effects associated with taking ofev. I used to eat small meals when I took ofev. I would have a protein on the plate with a carb on every meal. Mark
-
-
I’m new to this site and have info regarding the topic of OpenDoors patient support program that my pulmonary doctor had me sign up for. Maybe this will help someone. My best to us all who are struggling with this terribly unfortunate medical condition. Keep up the good fight!
https://www.ofev.com/support/open-doors -
Hello Yvonne, thank you for sharing the link to open doors. This is a great program. Take care, Mark.
-
@juzretired
Thank you for sharing this indeed Yvonne! I think many folks will benefit from looking into this further to see if it will benefit them. Welcome to the forums by the way, please feel free to connect with us any time.
Warm regards,
Charlene. -
Hello:
My name is Carol Dyck and live in Mississauga (outside of Toronto). I’m 83 and was diagnosed with IPF in 2014, but in April 2019 I started using oxygen for ‘walking’. Ofev is the only drug I take, so I guess that’s a “plus”. However, I’m only on my fifth day of taking 150 mg. twice a day, and so far have had no side effects. After reading some of the posts, I’m not out of the woods yet just because I haven’t had any side effects after 5 days of use! I do have to get a blood test once a month to check my liver. This disease is so new and scary to me as I have been healthy all my life, and I am finding it very difficult to accept this into my world!
Carol
-
Hello Carol, this is a good start for your Ofev regimen. Along with taking your Ofev, please stay active as you can be. It’s good you are tolerating the medicine. Keep doing what you are doing. From my experience the blood test for liver enzymes will occur every 3-4 months after they establish your liver is tolerating the medicine. The disease is scary and I’m sorry you and our members have to endure this awful experience. Try to keep a positive attitude. This goes a long way in enduring this disease. I wish it could make it go away. Take care, mark. Remember we are here to lend an ear, give you support and encouragement, and answer questions you may have.
-
@caroldyck
Hi Carol:
I too am Canadian and live about an hour and a half east of Toronto. I’m 81 and was first diagnosed in 2012. Compared with others on here I didn’t experience the usual breathing problems or other symptoms and as a result I didn’t go on OFEV until July 2019 at the 150mg dosage. Could you comment on why you didn’t go on OFEV until recently? In my case I fought going on as the side effects scared me. Then my GP said to me: “Bob if I told you the possible side effect from Tylenol, you wouldn’t take that either”. So I went on the medication and with one exception have had good tolerance.
I agree with Mark’s comments to you and you are off to a good start. The one exception for me is diarrea and it is the most common side effect experienced by folks on this Forum. In my case i’m not running to the bathroom 10 times a day and as such, while it is diarrea, it is by definition mild. I use liquid Imodium and take 7.5mls WITH my OFEV. It might be all in my head but I feel this has the effect of moderating the diarrea. However PLEASE consult you doctor before deciding to do this. Should my diarrea get worse, with the agreement of my doctor , I come off the OFEV for a few days to allow the bowel to settle down.
I’m glad to hear you walk as do I but so far I haven’t needed oxygen. Keep that head held high and as Mark says, ask us anything and if we can help we will.
Bob
-
My husband has been taking 150 mg 2 x day since November 3, 2019. He’s tolerating it well. His diagnosis was on Oct. 1, 2019 of moderate IPF & severe Emphysema after a bout with pneumonia. CT showed “ground glass”/hardening of lung tissue in upper quarter of both lungs. The retail price was $10,500 month. We were referred to OFEV OPEN DOORS foundation that per our income, we will receive it free for 2 years!! His required 02 liters & dependency at rest has decreased greatly as well as his recovery time! He had worked full time for 40 plus years & only retired due to 02 dependency etc. Waiting for POC to go through insurance etc. & planning on going back to work part time at 66 yrs !! old.
-
Carol:
A correction to my earlier post. I started OFEV in July 2018 not 2019.
Bob
-
@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
-
-
Hi Sara,
Thanks so much for writing to us and sharing a bit of your husband’s experience with Ofev. I’m really glad he is tolerating it well – I know this drug in particular (I am on it as well) can have some difficult side effects to manage. I am thrilled for you that you’re able to receive the drug through a foundation, this is wonderful news and the cost of the medication is astronomical, I agree. Glad the 02 dependency is coming down as well, that must mean he is recovering…. I am still working hard at this. So glad he is managing okay despite this cruel disease. Feel free to reach out any time and thanks again for sharing with us.
Charlene.
-
Stay well everyone.
-
Thank you Bob!
-
Hello Charlene,
long time no talk, hope you are well , In my case can t complaint, doing quite ok with the Phlegm at nites, I discover myself with the combination of two medications …bingo…., sleep 9 hrs. and no phlegm during nite….for our fellow IPFers, Mucinex syroup, and Phlemex with codeine syrup, 1 tablespoon of each at bedtime, that s all. Keeping away from Nintedanib(OFEV), I m doing OK no oxigen yet, Thanks God.. Best regards for you and our fellow writers
JAIME
-
@jaimeluciano
Hello my friend, so nice to hear from you! Thanks for reaching out — many of our forum members have been on my mind amidst this COVID-19 pandemic. Thank you for this update, and I am SO thrilled you’ve found a combination that leads to better sleep for you! I know the issue with phlegm was a real struggle, so I am really happy you seem to have figured out the best combination to use against it. I have no doubt that others will benefit from this as well, thank you for sharing! Glad to hear you’re not requiring oxygen yet and still managing without Ofev.
I think of you often, and appreciate the updates. Stay well Jaime!
Charlene. -
Hello @steve-dragoo
Thanks for your offer, woul like tu discuss with you about serrapetase, I´ll be alert to yours comments
thanks , best regards
jaime
-
Charlene, in answer to your questions about OFEV.
I was started on OFEV within two weeks of being diagnosed. In our initial meeting the doctor did not indicate a severity of the condition and I was so unprepared for the diagnosis that I forgot to ask. The doctor did not offer an explanation as to why he chose OFEV over Esbriet. I have been on OFEV for six months. The side effects have been minimal with the exception of diarrhea which did not began until I had been on the medication for four months. I am controlling the effects with Immodium. And in answer to your last question, I have the IPF form. .
-
@jaimeluciano
Hi Jamie – Just brief answer until I know more about your circumstance. About 16-17 months ago I started developing phlegm that was constant. So I did as much research as I could and discovered Serrapeptase helps many with phlegm but has been used to help heal scar tissue in the liver, no one is sure if it helps heal the lung scar tissue but its’ primary job is eating dead protein (scar tissue, also food and IMPORTANT – pills).
Within a few days, phlegm improved greatly but I have substantial cautions for you. Never ever take it anywhere close to any other pills or food. I recommend at least 3 hours before/after pills and food. Otherwise, it can be either a waste eating the food or dangerous because it dissolves your meds faster. – Did that once with metformin, wish I hadn’t done that. Actually did it twice – once with niacin – really wish I hadn’t done that.
Serra is measured in SU so look for a minimum of 80000 su and no other stuff in it. I started at 120,000 daily and worked up to over 400.000 su daily but I tried Wei lab products and have cut the serra back to 205,000 su daily. I bought mine at Amazon. There are no significant contra-indications with dosage until you get over 1,000,000 SU per day and I am considering going to 500,000 if I can get a shipment here in the Philippines – because it might help lung tissue but I don’t really know. I also try to update my research about every 6 months as new white papers come online. Hope this helps you…
Stay safe and well – Steve
-
@jaimeluciano – I sent you a response but had to edit it and then it disappeared. Hope you can see it… – Steve
-
Hi @steve-dragoo, so nice to hear from you my friend! I think the post was flagged as spam for some reason, so I just released your reply to Jaime. I have no doubts it will be informative! I know I owe you an email, it is coming… promise! Hugs, Char.
-
Hello,
I’m new to the forum, just diagnosed January 2020 with mild IPF. Started Ofev about a month ago with few side affects. I’m blessed in that aspect. Still trying to learn symptoms to attribute to IPF, and environmental influences that bother my lungs. My lungs burn most of the time and I’m wondering if this is common for other IPF sufferers? My PFT results are very good, considering the scaring I have. I look forward to hearing about others’ experience. Thanks!
Sue
-
I’ve had for over four years and major symptoms are shortness of breath going up stairs, running or crouching. I feel fortunate in that I can do most of the sporting activities I like to participate in but much less competitively. I’m on OFEV and have some of the typical side effects. Hope that helps.
Log in to reply.