- This topic has 49 replies, 13 voices, and was last updated 1 year, 7 months ago by
.
-
Posts
-
-
Update! So far I seem to be tolerating the Ofev pretty good with minimal side effects after one week . I know it is still premature, but if it stays like this & does what it is suppose to, I am “all in”! Next, I have to go for left & right heart catheterization next week to see if my heart has any signs of narrowing vessels or pulmonary hypertension. With my Doctors help, I am trying to get a good handle on exactly where I am at. Also, my Pulmonologist is sending all my records to Tampa Hospital for review to see if I meet the criteria to be placed on the lung transplant list….I am actually hoping I am so I can be registered in the event I might have to make that call down the road. So many things to look forward too! May God bless all of you for your strength, courage hope, faith & support. At least here we get a chance to vent with people that truly understand what living with this diagnosis is like & also get feedback from people with more experience down the line…..This is one hell of a disease!
-
Hello John, this great is great news. You have a wonderful outlook. I believe it helps us cope. Hopefully you get an opportunity to get listed. You are so correct about being registered. There is a slim window for a person to be evaluated and listed. I am glad you going through this being fairly healthy. Thanks for the update. Mark
-
John,
hang in there. I have been on OFEV for over 2 years and it has helped me for sure.
I changed from 150mg 2x a day to 100mg 2x a day
it has limited
most of the side effects for
me
good luck
-
-
-
-
-
John –
Great to hear that you are doing well with OFEV. I am still waiting to see if my doctor can get my cost lower to a more reasonable level. If not, I will wait and when change insurance plans I will start it. My insurance agent told me that different insurance companies list their own price for retail cost of drugs. Sometimes they are quite different in cost. When I change companies I will be able to get the cost down considerably for OFEV.
Marianne
-
-
Hi all –
Latest news – My pulmonary doctor reached out to manufacturer of OFEV on my behalf awhile ago. He has heard nothing so he wrote a prescription for pirfenidone to see if that is less expensive with my medical plan. Now we will waiting to see what my insurance company decides. I know if I change plans for 2020 my costs go down in respect to OFEV. Still expensive but not near as expensive as 2019 cost. I am planning to participate in a clinical trial this summer at OSU. There is no way of knowing if I will get the drug or a placebo. Starting pulmonary rehab tomorrow so we will see how that goes.
Hope all the dads, grand dads, dads to be are having a great day with family and friends.
Marianne
-
Thanks for the update @marianne! Here’s hoping that the Esbriet (Pirfenidone) will be less expensive with your plan, as opposed to the Ofev. I know lots of patients who are on it, and believe it has been successful in the slowing (not stopping) of their disease, so goodluck. Keep us posted on what your insurance company says, and best wishes for the OSU trial. I think you’ll find a lot of information beneficial from the pulmonary rehab, I really enjoyed my session of it and hope to do another soon. Goodluck 🙂
Charlene.
-
Charlene –
Thanks. My first pulmonary rehab was earlier today. I thought it went pretty well. I was able to keep my oxygen levels in the mid 90’s. BP was really good before and after the session. Since it was my first session I only had to go 6 minutes on each machine. Plus we did stretching exercises with stretchy therapy bands. There were only 4 people in the class. One was a man with IPF diagnosed 3 years ago. He was just listed for lung transplant at Ohio State University in Columbus. Not sure of his age but I believe he is either late 50’s or maybe early 60’s. One of the physical therapists told me that usually people are on the transplant list for 30 days. The therapists told me to talk to my pulmonary doctor about get evaluated early for a transplant before needing one. Tomorrow we have an education lesson as well as exercise.
Hope everyone had a good day.
Marianne
-
Glad to hear this update Marianne, I was hoping the pulmonary rehabilitation went well for you! Sounds like a lot of good information was shared, and way to go for keeping the oxygen sats in the 90s. Wow, OSU must have a lot shorter of a wait list for lung transplantation. Very rare for patients here to be called within 30 days of listing, but that is good news for OSU. Hope the rest of the program goes just as well, and that the educational session tomorrow is helpful. Thanks for sharing this update!
Regards,
Charlene. -
Charlene –
Second day of rehab is finished. It was a bit more difficult today as I had to exercise longer but I was able to do it and keep my oxygen levels in the 90’s. The education portion today talked about nutrition. There were 7 people in the class for the nutrition session. I am not sure but think many of them might have COPD. I think they all had lung issues. I did find out that the man who is listed with OSU has also had some heart issues in the past. I did not get to talk with him today as he only did the exercise portion so he was finished when we were getting to the exercise part. We have an arm machine that we use. Put hands of bars and more arms forward for 4 minutes, then backward for 4 minutes. I imagine I will have to increase to 5 minutes each direction on Thursday. Only thing that bothered me was my right side where chest tube was inserted. It was sore last night and most of the day today. I am sure the stretching is affecting it a bit. Did 2 – 6 minute walk tests on my own today and was able to keep the oxygen levels in the 90’s for both tests. I did some stair climbing right before the first test and the oxygen levels were low 90’s. Next time they were high 90’s.
Either tomorrow or Friday I am going to go into my office for half of a day. So far I have been working from home. My office is 45 minutes to an hour drive from my home. I am not going to try it on an rehab day yet.
Hope everyone had a good day.
Marianne
-
Hi Marianne,
Great to hear from you, thanks for your update on day two of pulmonary rehab!
If your program is structured like mine, the difficulty and length of exercise will increase which often makes it harder for us, but I still find it beneficial. Glad your oxygen levels remain in the 90s, that is good news. It would make sense to me that many of the participants have COPD, this tends to be a lot more common at my transplant centre as well. Did you find the nutritional discussion interesting? I love my nutritionist who is part of my *eventual* lung transplant team. I would imagine that using certain muscles and stretches that you don’t normally use would effect the spot where the chest tube was for sure. Hopefully you get some relief from that once you’re home and done for the day.
Goodluck going back to the office, I hope it goes well for you! I’ll be thinking of you – I remember how hard it was to return to work after my diagnosis, and subsequent medical appointments. I felt completely different somehow, but now my team (most of them anyways) is really supportive and I am grateful for that. I also have accommodations to work from home. During cold and flu season, please be sure to be careful in an office environment if folks are sick around you! More about that in the fall 🙂
Cheers,
Charlene.
-
-
Good luck to you with the rehab @Marianne…..keep on keeping on
-
Hi all –
Third day of rehab finished. Classroom part of rehab they discussed relaxation techniques. Doctor has me pre-approved for both OFEV and Esbriet. Finally got some answers today on prices. Better than before but still fairly expensive. I just have to decide which one I prefer. Right now I am leaning toward OFEV because if I change plans for 2020 I can bring the cost down considerably. I have a question concerning Hepatic Function Panel (liver function tests). I realize both drugs require checking the liver function often. Once before starting the drug and while taking the drug. My doctor wrote a script to have a liver function panel done every 2 weeks for the first year. Has anyone else had the liver function panel blood drawn every 2 weeks for 1 year? He might just being overly cautious. I have not asked him that question. I did not even know he had written this order until today when taking with someone from his office. They suggested I have a blood drawn before ordering the medicine. This makes sense.
Note to Charlene – The owner of the business where I work is very proactive concerning my health. I have worked with him for 34 years. When he or someone at work is sick, I work from home. Also, if the weather is really cold or lots of snow I work from home. I only worked in office 2 hours yesterday. My commute is around 45-60 minutes one way so I was away from home for 4 hours. I got a later start than I wanted to my day. Going to try to go in office tomorrow morning and hope to stay from 4 hours. We will see how I feel.
Marianne
-
Hi Mariane,
Glad the rehab days are going okay for you and that you’ve been pre-approved for Ofev and Esbriet. Keep us posted on which one you end up choosing, although I know that isn’t an easy choice. Regarding the liver function testing, I get this done but every two weeks seems a bit excessive to me, although I am not a physician of course so I’d trust their opinion, based on your asking the questions as to frequency of liver function tests. I just can’t imagine it changing so rapidly within two weeks, but maybe one drugs has more impact than another. Definitely ask the question of frequency if you think of it…
I am so glad to hear your employer is proactive in caring for your health. I am pretty lucky that way too, and it makes the world of difference, doesn’t it? Keep working at increasing the office hours slowly, good for you. Were you able to do the 4 hours on the second day?
Charlene.
-
-
Update –
Got an email today from my doctor. I only need to have liver function panel blood drawn every 2 weeks for the next 2 months. Still not sure which IPF drug I will end up taking. I spent time on phone today trying to get some answers from insurance concerning pricing of Ofev and Esbriet. Basically, they could nor or would not give me a price. Now I have a question into my pulmonary doctor to see which drug he would subscribe for his own wife or mother and why he would pick that drug over the other. This was suggested by a good friend whose mother suffered with PF as well as congestive heart failure. This is a question she often asked her mother’s doctors. So it will be interesting to see how he will answer that question.
Did anyone else in the US have problems getting their insurance company or specialty pharmacy to give them answers as to the cost of either Ofev or Esbriet? I am on Medicare A, B, Supplemental Insurance and Part D drug prescription coverage. From what I can figure my Part D drug prescription coverage is not much help for a Tier 5 drug.
At this point, it looks like I will order it through my doctor. It is still very expensive but at least they are giving me a price per month. Everyone else will only give me an “estimate” as to the price for the 1st and 2nd month.
Marianne
-
Liver function panel is back before starting drug treatment. All liver functions look good to me. My doctors automatically release results of tests to me. I haven’t yet heard back from my doctor as to which drug he would use to treat a member of his own family.
Heading out this morning for a massage. I so need that massage after a week of hassling with insurance company and specialty pharmacy. This is going to be a “treat myself day”. Might go to yoga too but not sure if I can do all that stretching yet. But definitely signing up for yoga for July. With Silver Sneakers (when on Medicare and available with some insurance companies in the US) I can go to some exercise classes free. I plan to use it to take yoga classes with some of my friends. I have attended once before lung biopsy and I enjoyed the class. The teacher is excellent. It is held at a local retirement center so I am not the oldest person there!!
Happy weekend.
Marianne
-
Hi @marianne,
Thanks for providing us with this update, and I’m really glad to hear you’re being such a strong advocate for your healthcare needs by asking your doctors the tough questions. It sounds like he/she is very responsive, which is great. Do let us know which of the anti-fibrotic drugs they recommend for you, as there are folks on the forums who are on both (not together, but either Ofev or Esbriet) that can likely provide you some insight. Sorry I don’t have much to share regarding the co-pay, as I live outside of the US but some members have shared ways to get the medications a little cheaper. I hope these options work for you too! 🙂
Glad to hear your liver function panel came back without any significant problems, excellent. I am also glad to hear you’re treating yourself to a massage and a “taking care of you day”. These days are so important, and are something I’ve started implementing for myself as well. I have a massage on Tuesday! Enjoy your day, and I hope the weather is as beautiful where you are as it is here today.
Kind regards,
Charlene.
-
-
Healthwell Foundation # 800-675-8416 This place picked up my co-pay for the Ofev. They have funds to assist with meds. I also have Medicare & BC&BS as a Secondary Insurance. I didn’t think I would qualify & they approved me to pay the co-payments. Worth a shot….
-
Hi John,
Thanks for sharing this! It is actually on my “running list” of topics to write about/share on the forums, but I am glad you are able to share the personal experience of dealing with Healthwell. I am so glad they picked up your co-pay for the Ofev, I am very happy for you. Thanks again for letting others know about this resource.
Kind regards,
Charlene.
-
-
Good morning….Being relatively new to this, regarding blood work to check liver functions, I can only share my experience thus far. My guess is each Doctor might have a slight different approach monitoring your blood. My Pulmonologist had me take a blood test prior to even starting the Ofev. Then wants me to take 1 test per month for 6 months, then, 1 every 3 months after that….I will be taking my first post blood test the end of this month….They do need to monitor how the Ofev is effecting the liver closely at first to see if your liver can tolerate it……I have read where some people had to stop taking the Ofev due to bad liver functions after being on it….fingers crossed! Hope this helps
-
-
Hi John, good morning,
My experience sounds the same as yours re: doing blood tests, including liver checks before starting the Ofev and then while on it as well. Glad your doctor is being thorough, as the liver can definitely be effected by our anti-fibrotic medications. Goodluck with the test at the end of this month, hope your body is tolerating the Ofev okay! Keep us posted.
Charlene.
-
Thanks Charlene….still doing ok with the Ofev & side effects are minimal. Choosing the right food to eat has been somewhat of an adjustment & a learning experience for me by trial & error. When something upsets my stomach, I make a note not to eat that again with the meds….only once with eating fried chicken it left me feeling some stomach discomfort but overall hasn’t been bad. They say greasy & spicy food is bad with Ofev! No diarrhea as of yet! Will keep you posted with my post blood-work……..more will be revealed
-
Hi John,
Glad to hear that so far the effects of the Ofev are minimal for you. You’re very wise in tracking or making note of things that upset your stomach; hopefully this will make eating comfortably a bit easier! Hoping to hear good news from the bloodwork and that the Ofev continues to be manageable for you.
Regards,
Charlene.
-
-
John L and Charlene –
Thanks. By looking at Healthwell online I do not qualify for help from them as I am still working. I can’t remember if I actually called them but pretty sure I did. I will check with them again. Are you retired or do you still have a full or part-time job? I have Medicare as well as Supplemental Coverage and Part D Prescription Drug plan. I just switched my supplemental coverage to save money and to add the Silver Sneakers option. I found an exercise place that I can take classes free of charge with Silver Sneakers. If I want to take water exercise classes or use the pool I pay just $10 per month. Stopped to day to sign up for July classes but I don’t have my Silver Sneakers card yet.
The massage was wonderful. I took flower to give to massage guy plus a PF jelly bracelet. He will wear it. He is one of the owners and is excellent. They had a special so I saved money by using their summer special too. Gorgeous and sunny in Columbus, OH today. About time – as it has been rainy all week.
Marianne
-
Charlene –
Yes I was able to work 4 hours yesterday. Scheduled a massage for July and another one for August.
Marianne
-
Hi @marianne,
Sorry for keeping this short, I am just about to head to bed as I am very tired. However, I wanted to say kudos to you for working 4 hours the other day! How did it go in terms of how you felt in the evening? Were you exhausted? Good for you as well for booking a massage in the next few months! I have one tomorrow and am looking forward to it. They often help me sleep better too, in addition to relaxation, which is always a bonus for me.
Take care,
Charlene.
-
-
Marianne…Yes, I am retired. I am on Medicare, & BC & BS as a secondary, also get a pension & I was approved. I was surprised because you have to tell them your complete income when applying. My co-pay was what they covered. It’s worth a shot to call them & speak to one of their representatives……I know there are other places too that offer support? Someone on here should know the names & contact numbers….You can inquire on a forum to get the info you may need….good luck to you!
-
John L. – Thanks for your reply. I will check again with the various foundations but all I have talked to have turned me down because income is above what they consider. One foundation does not count 1 house and 1 car but adds in your retirement accounts (or the portion you are withdrawing monthly) to your income. I recently applied for social security and do not yet know the amount I will get monthly. My co-pay is very high. I have talked to Healthwell Foundation, Open Doors, RCC Foundation, my Specialty Pharmacy (they told me to call SS for extra help), BI cares, PAN, Patient Services, Inc. Doctor also wrote prescription for Esbriet to see if I could get some funding. Right now it looks like if I continue to work full time, my best price for either medication is through OSU Outpatient Pharmacy – it is still very high. Or I can work part-time for less money or retire. These seems to be my options.
Marianne
-
Charlene –
It went pretty well working 4 hours in the office. At today’s rehab we had 2 patients graduate. They are finished with rehab and both were able to increase their 6 minute walk distances by 30% so that was great news. I am working tomorrow in the office, then I have a longer rehab session in the afternoon. I will let you know how I feel after both of those in the same day. Our rehab class has grown larger. Pretty sure there are only 2 of us that have IPF in the class. Got an email from my doctor replying to me that he thought Ofev was the correct medication for me. That’s all I know right now. Hope you had a good sleep. I am heading there soon.
Marianne
-
Hi Marianne,
So glad to hear your time spent in the office went okay – kudos to you for doing 4 hours! Do you think you’ll continue this semi-regularly, or a couple days per week or primarily continue to work from home?
That is wonderful news about the pulmonary rehab graduates, and their ability to increase their 6MWTs by 30%. It sure gives other patients participating some hope doesn’t it? Hope your longer rehab appointment and work in the same day isn’t too much. I find it a task in itself learning our “limits” and what we can/cannot do each day. I am on Ofev so if you have any questions, definitely feel free to reach out or check the Ofev thread in the forums, lots of helpful information there. Talk to you soon!
Charlene.
-
Hi Charlene –
I will probably continue to work from home part of the time during pulmonary rehab. We have a very small office. One of the guys works remotely from home the majority of time. The owner travels alot for clients and vacation. When he is out of town, he prefers that I am in the office. I assume I will try to return to work full time after I am finished with rehab. It depends how I feel. I am not as tired as I was a couple of weeks ago. It also depends when I go on the medicine how I feel. My doctor said he thought that Ofev was the best choice for me mainly because I like the sunshine and love to travel to FL to visit family and friends.
A guy in my rehab class got was placed on the transplant list with Ohio State University (OSU) this week. Hopefully, he won’t have a very long wait time. One of the nurses in rehab told me that OSU often has a quick turnaround time on the transplant list. I asked him which medicine he was on. The answer was neither. Ofev gave him too many side effects and Esbriet did fine for 6 months until he got a horrible sunburn and ended up in the hospital. He went off Esbriet for a couple of months, then tried it again, again he had side effects. So he is not currently on any anti-fibrotic medicine. He has in the past had a heart transplant. He is on oxygen 24/7. He was diagnosed 3 years ago.
Yesterday’s rehab was great. Oxygen levels were 95 before exercise and 96 after. Yeah! Blood pressure was great too. No rehab today so at work for 4-5 hours, then home.
Hope everyone has a great day. Sun is out and close to 90 degrees today in Columbus, Oh.
Marianne
-
Hi Marianne,
Thanks for your reply and I hope this note finds you doing well!
I’m really glad to hear that you have the flexibility to work from home, especially during pulmonary rehab, and that your boss is supportive. It is always nice when employers are willing to add accommodations in for us that make our lives just a little easier!
Wow, the story of the man in your pulmonary rehab program sounds amazing. I didn’t think they would consider a lung transplant if he is already a heart recipient due to antibodies and immunosuppressant drugs. That said, OSU is a great centre and sounds like they have confidence that it will go well. I hope his wait isn’t too long either. Really glad to hear that pulmonary rehab seems to be doing well for you, and you’re finding it beneficial. Keep at it 🙂
If you have any questions about Ofev, feel free to reach out. I’ve done quite well on it but I know many who haven’t tolerated the gastric/GI issues.
Talk soon,
Charlene. -
Update guy listed for lung transplant had heart by-pass a few years ago, so he did not have a heart transplant. He comes to rehab every week but really looks like he is exhausted most of the time.
John L. – Are you still doing well with OFEV?
I applied for SS and will soon start receiving payments from them. I am still on hold on getting OFEV. When I retire from working, I should be able to get some help with payment for my medicine. Seriously thinking of retiring by the end of 2019.
Rehab is still going well. I just finished my 4th week of rehab. My oxygen levels and BP are great before rehab and oxygen levels go up after rehab. Oxygen levels usually in mid to high 90’s.
I started back to yoga this past week. I only go to yoga once per week and rehab 3 times.
Thank goodness the heat and humidity levels are better today in Columbus. This week has not been fun with 90’s and high humidity levels.
Hope everyone has a great weekend.
Regards,
Marianne
-
-
Hello, I was diagnosed with IPF in June after having a cough that would not go away. I am not on oxygen although my o2 drops to 89 with quick activity. I started OFEV 2 weeks ago. So far no side effects. The only issue I am having is eating at the right times to keep my meds 10-12 hrs apart. I am not sure how much food is enough to prevent side effects. I would like to have just a snack for breakfast but the instructions are for a full meal. What are others eating for breakfast?
My Doctor’s office at Cleveland Clinic and specialty pharmacy handled all the insurance issues for me. The pharmacy told me my co pay would be picked up by the drug company since I had commercial insurance (BCBS) instead of medicare. I did not ask for help so be sure and check with the specialty pharmacy regarding copays. Hope this information helps.
regards,
Cindy Sears
-
Hello Cindy, I see John has offered up some excellent suggestions to you for breakfast. With the OFEV everyone is different. You state you have been on OFEV for two weeks without any side effects. This is great news. When was on OFEV I would also eat a banana on most days along with yogurt. I would then eat a couple of hours later as I was trying to lose weight and was eating 5-6 small meals a day. I also made I had a protein with every meal. By the way I also go to the clinic and was transplanted there. Good luck and best wishes. Mark
-
-
Hi Cindy…welcome! I have been on Ofev about 2 months now. I struggled also trying to find the right food to eat when taking my Ofev. I believe everyone is a little different but for me I try to eat something that will absorb the medication both in the morning & evening. For breakfast, I can get by with an english muffin & hard boiled egg or a bowl of cereal with a banana. See what works best for you as long as the food will absorb the meds. Main thing I found is greasy & processed food upsets my stomach after I take the Ofev. Good luck with your journey….I learned so much on this site from all of you. Charlene & Mark have been very helpful….best regards, John
-
-
I’m so glad to hear that you are tolerating OFEV well! I just received my first bottle yesterday. So far I haven’t taken any; just fearing the side affects I guess. I have to go to a family wedding this weekend so think I’ll wait til Monday when I can stay at home. I’m sure the bride will appreciate no puking in the pews! 🙂
-
I just started three weeks ago and like linda i read about all the dire side effects. After six days and getting advice from my predecessors i jumped in.
Very minimal side effects.
A little humor: i kept reading about the explosive diarrhea and i work in public so i bought 24 adult diapers from amazon. Wonder if i should return.
We have the experts on here and i soak it up and appreciate all the knowledge -
Hello All,
I am also new to this disease and have completed my first course of 100 mg Ofev successfully with no side effects and normal liver test. I am starting my first 150 mg course this week and so far so good. My Ofev is being covered by a Grant from BI, which I applied for. Healthwell turned me down. I have read in Ofev’s literature that its OK? to moderate your Ofev intake as necessary; stopping the 150’s and returning to the 100’s until side effects abate or quitting entirely for a period of time and then resuming. I am also very interested and pursuing herbalists and Eastern medicine as well as the Wei Institute. I am 75 and “healthy” and feel I have caught this disease at its onset. I have not investigated a transplant because of my age being a nonstarter. This string is incredibly helpful, and makes feel like I’m part of a team. Thanks everyone!
-
Hi Bill,
Thanks so much for writing and I’m so glad to hear you’re managing with Ofev so far without many side effects, that is great news! I can’t share any personal experiences about Wei institute or other herbalists, but can share with you that I was one of the patients who have to go on/off Ofev several times before my body would tolerate it. I couldn’t handle the 150 mg 2x daily at first, so I went off it entirely, then back on at 100mg and tried 150 again. I couldn’t tolerate it a second time, so we did the same thing, to allow my body to correct the unpleasant side effects and have a break before trying again. We did a slower wean onto the 100 and then upto 150 again, and with a few additional tips from other patients, I was able to tolerate it. Hope that helps!
Char.
-
-
I am a 72 year old male diagnosed with Mild Pulmonary Fibrosis and Mild Emphysema 2 years ago. I have started OFEV one week ago today. Two 150mg per day. Happy to report that I had only one slight diarrhea event 30 minutes after taking my first pill after a large lunch. I was very concerned about the side effects that many folks have. Just thought I would post this to let anyone considering OFEV that I have had a good experience….so far.
-
I hope you continue to manage the Ofev without the awful diarrhoea. My husband had been taking it ok for 9 months but now is getting the diarrhoea at some point every day or so. He takes the Loperamide to help this side-effect but has lost a significant amount of weight and so his appetite has suffered. Good luck with the medication.
-
-
Hi all, maybe this is a Q to be posted elsewhere, but just curious about rules regarding being on the transplant list abroad. In Norway you are off the list after the age of 65, and in order to be ON the list you have to be so sick that expected life time is less than 2 yrs. Sees to be different from country to country.
BR Ida from Norway
-
- You must be logged in to reply to this topic.
