September 15, 2020 at 11:33 am #25560
I have a close family member with diagnosed IPF who is refusing to try any medications. I am not sure of the reason. Respecting boundaries, of course it is her choice. However, as a family member, it is not so simple to leave it at that. There must be a way I can help.
Can someone help me to understand why someone would refuse to use the medications?
Let me ad that the advise of the doctors seems to be that she should take them, but they are not pushing too hard.
She says something about the disease not being bad enough yet. I mean….what the heck does that mean? This is a progressive terminal illness here. What is there to wait for?!
So is this denial? Is it a form of defiance against the disease? It must make perfect sense on some level.
Any personal stories or insights much appreciated.
September 15, 2020 at 2:54 pm #25565
Jason, I am sorry to hear you have a family member who is dealing with this. I think you have probably hit it right when you ask if this is a form of denial. When you say she says it is not bad enough yet, that is a big clue. It might also be a question of cost. You don’t mention her age or her relationship to you. You also don’t say what meds she is refusing to take. I just turned 70 and was diagnosed three years ago. I tried numerous inhalers, but they made no difference in my breathing and I quickly developed severe muscle cramps whenever I took any of them. I have now been taking Esbriet, one of the two specifically for IPF, for over a year. My situation appears stable right now, for which I am grateful. I can tell you that these medications are expensive, but there is help to pay for them. I assume her diagnosis is recent, so give her a little time to come to grips with it. Help her do some research about the disease through reputable sites, not Dr. Google, so she can get a better understanding of what is happening.
I wish your family the best of luck with this situation and hope your relative will choose what is right for her. Bless you for caring enough to reach out for help.
September 15, 2020 at 3:04 pm #25566Karen Boettin.Participant
It really is a personal choice.I went thru prednisone at first…then Imuran lasted 3 Months got puking sick then cytoxan ,finally cellcept for 3 yrs.I wish I had only tried the cellcept but that’s my opinion.I am on oxygen but only since starting the cellcept.I am now taking ofev it is a drug made for this disease which they didn’t have years ago.I guess I wanted to try anything to stop the progression.Your family might come around after the shock wears off.good luck
September 15, 2020 at 6:03 pm #25577Pete BesioParticipant
I am fairly new to the IPF “party”. It was pretty clear I had IPF around June 2019. My pulmonologist discussed OFEV and Esbriet with me at the time, I wasn’t crazy about the potential side effects, so I opted out. In June of 2020, my PFT results showed continue degradation of my lung function deteriated further, my Pulmonologist said ” OK, it is time to start the meds”. But he was not overly aggressive with the suggestion. I stayed in denial for a couple of months. Oh…I should add that I don’t really have any symptoms. My lifestyle is very active, I am fit as a fiddle….etc. Not sure what inspired me to take my IPF more seriously, but I did. Did a fair amount of research, talked to a number of clinics that were conducting clinical trials and became inspired to get after my treatment. Much of my research has indicated that IPF effects everyone differently, including the rate of decline. It occured to me that it wasn’t a good idea to wait until i was incapacitated in one form or another to start treatment, when that treatment was readily available. So I started on Esbriet and enrolled in a clinical trial.
I too thought my disease wasn’t bad enough. But…it is not going to get better. If I was bleeding, would I put a bandaid on the cut to get it to stop? or would I wait for the blood to flow freely so I needed to go to the Emergency Room? I decided to apply the band aid and do EVERYTHING I can to slow the progression of my IPF.
So that is my personal anecdote….can’t say I have any advice on how to get your family member to see the light. There is a lot of support on these forums, we are all happy to do what we can to help.
September 15, 2020 at 6:27 pm #25581Mark KoziolParticipant
Thank you Jason, Karen M., Karen B., and Pete for discussing this topic and offering your opinions based on your experiences. Our forum runs smooth and efficient because I believe our members are well informed and are able to convey their knowledge and experiences to others in a thoughtful and compassionate method. You all make Charlene and my job easy. Thank you,Mark.
September 15, 2020 at 10:22 pm #25582
Hello Karen, thank you for your kind words. If this is denial, I am at a total loss for how to deal with it. These two new medications seem to really make a difference, and I can’t understand why anyone wouldn’t want to try them at least, and barring a massively difficult side effect, take them. The person I am talking about is my mother, and I would do anything to help her realize every extra year with us is worth these medications. I hadn’t thought of cost as a factor. How much do these medications cost? The two I am talking about are Ofef and Esbriet. Yes her diagnosis is fairly recent, about a year now, although symptoms have been around much longer. There is no denial when it comes to wills or avoiding covid19 though.
I am so glad your situation is stable. These medications are very useful and knowing you are taking them making them even more so. I hope that better stronger treatments come available as well.
September 15, 2020 at 10:28 pm #25583
Thank you for the reply, Karen. Those other meds you tried may have helped. Best of luck.
September 15, 2020 at 10:37 pm #25584
Hi Peter, than you for explaining your experience. It seems that you and your pulmonolgist decided that there was a reason to wait. I guess with no symptoms, it was just easier that way. I am not sure of the pulmonoligists original view though. Why not start on meds the day of diagnosis? I mean, even preventatively? It certainly has been amazing you have not had symptoms, or at least not much.
September 15, 2020 at 10:41 pm #25585
Hello Mark, thank you for the note. By the way, if I say anything insensitive let me apologize in advance. I don’t have a serious disease. I just care deeply about someone I love. Feel free to correct me if I say anything dumb 🙂
September 15, 2020 at 10:56 pm #25586Mark KoziolParticipant
Hi Jason, this is new to you. You can never say anything dumb or unimportant. As patients we all go through scattered emotions. I know caregivers are going through their own different set of emotions. Unfortunately there is no diagram on how to be a patient or caregiver. We are here to listen, help, and share. Please anytime reach out. Take care, Mark.
September 16, 2020 at 7:06 pm #25589Pete BesioParticipant
Jason…sorry to hear that it’s your mom. Interestingly, when I was originally diagnosed, my oldest daughter was really concerned, much like you are. I downplayed the gravity of my situation to her, but I can tell she is much happier now that I have taken full responsibility. Wish I had a magic bullet to help you.
September 17, 2020 at 4:09 pm #25591
Until you have been diagnosed with something like this, it is hard to understand the denial a person feels. In the beginning I kept telling myself that if things got too bad I would just step in front of a bus rather than deal with it. Sounds stupid, I know, but facing our own mortality is just very difficult to do. Think about that. What would YOU do? Logically, you would do all you could to take care of yourself, right? But in actual practice, we don’t all react that way right off the bat.
As far as the cost of Esbriet, a one-month supply costs over $10,000 in my case. Not sure if anyone else out there has other numbers. Between my insurance and a supplemental program the cost is covered for me for now. If that ends, all I can say is, “It was nice while it lasted.”
Jason, give your mom some time and offer her your support. Ask her to talk to you about her feelings and reasons for not wanting to take meds right now. Do remember, however, that in the end the choice is up to her. I feel sure she will see the right choice for her.
September 17, 2020 at 4:14 pm #25592
I feel the frustration you are talking about. There is a sense of denial to some extent in most of us. I was 63 when I was officially diagnosed after 6 months of not feeling well. I’ve sold my medical practice and the huge reduction in stress level has made a huge shift in how I feel. I’ve been on OFEV for two years with minor issues. Expensive yes. My pulmonary tests were stable for two years and i had a surprising increase (10%) in my diffusion capacity which is likely from a desired 15 pound weight loss. As a physician treating a chronic disease as early as possible (assuming side effects are acceptable) makes sense. So the concept of one’s IPF “not bad enough yet” makes little sense. There are trials with inhaled OFEV that looks exciting. The OFEV and Esbriet have shown reduction in exacerbations so i would wait until it gets worse. If the diagnosis is not absolute then waiting makes sense. Once the lung biopsy shows IPF—it should be a strong consideration. If i progress ever so slowly (now 65) I may get too old for a transplant if I’m a slow progressive but who knows. Lots of exciting trials out there (possibly will be 2 meds taken together to fight the fibrosis). I just want to hang in there to have that option if and when that happens. My new mantras: CPAP (if needed); lose weight (if needed); exercise (hike /walk) and retire!! Best of luck to all of you
Don Salzberg MD
September 17, 2020 at 4:17 pm #25593
i would NOT wait for it to get worse to take the anti-fibrotic meds. Sorry for the typo.
Don Salzberg MD
September 17, 2020 at 5:37 pm #25594
Hello Jason my name is Katie and I have IPF ,I’m sorry to see you are having trouble with your family members decisions to not take their meds but I also understand what your family member is feeling as I have been feeling like I don’t want to take my meds either as they make you feel awful , I never know from one day to the next how my body is going to react to meds as one day I will vomit all day and the next day I will be in the toilet all day and in between time i just feel lifeless and can’t be bothered doing anything, so perhaps your family member may be experiencing some of this stuff and just hasn’t said anything , I hate the meds and as I also don’t feel my condition is bad enough to be taking such strong meds I sometimes feel like going off them but I haven’t as I realise they may help to slow down the progression of the IPF but some days I think I would like Quality of life rather than quantity
September 18, 2020 at 10:03 am #25595
Thank you for sharing your experience with us, and I appreciate everyone who has contributed to this thread! Being able to discuss potentially-sensitive issues on our forum with others who truly understand, is one of the reasons this platform is so unique and helpful. Thanks for having such honest and respectful conversations.
Don: I was particularly interested in the comment about stress you mentioned, how the reduction in stress has made a huge difference in how you feel. Do you mean how you feel physically or mentally? I’m trying to make that shift, but it’s hard as I am such a classic “over achiever” and want to have my hands in everything. Would be curious to hear more about how its helped you as a fellow patient with IPF.
September 18, 2020 at 2:23 pm #25600
Thank you for your reply. As a solo practitioner the stress i had was enormous. When i first got sick (before I had a clue I had a lung issue) it was always late AM at the office so I thought it was environmental (fatigue; brain fog; body pain; loss of empathy and passion). I always loved doing Ophthalmology and when i was stressed (and everyday there was always something with staff etc) within a few hours I was toast. I cancelled afternoons left and right. I thought it was a mental/depression thing but eventually I learned I had IPF. I was never sick a day in my life and at 63 stress was physically impossible to handle. And for 33 years I handled stress like it was a non issue. Now that I retired I truly feel better. Lost some weight. My DLCO improved 15%. I have been a micro-manager/over achiever like you. So it’s both physically and mentally. It’s amazing to be able to talk to someone for an hour. I never had time and the mental fatigue really affected me. We all have stress. Retirement (if you can) is really what i needed but was afraid I would miss things and no longer be in demand. Old soldiers never die—they just fade away.
September 18, 2020 at 2:32 pm #25601
I’m sorry the meds are giving you such side effects. I found the OFEV used to make me nauseous and had diarrhea but I take Zofran with my AM OFEV but not in an empty stomach. I get zero nausea now. Also minimal diarrhea as well. Been on meds for two years so overall side effects have lessened. Obviously each person has a different response to a given medication. Mucinex (OTC) has been great at reducing mucous (in throat) which I’ve read is common with IPF. Hoarseness often. Consider talking with your Pulmonologist on a lower dose or switching to the other med. I am hopeful a nasal spray version of OFEV will come out (in trials now—Phase 3 I think). That will revolutionize things and reduce systemic side effects immensely. Good luck. I can empathize on how the meds make you feel. Sometimes the poison is worse than the cure. Hang in there!!
Don Salzberg MD
September 18, 2020 at 9:30 pm #25602
Hello Dr. Don thankyou for your reply and advise , I am now taking tablet half an hour before Ofev and that is helping with nausea and if diarrhoea gets to bad I take a tablet to help with that , I am slowly working things out but I never know from one day to the next how my body is going to react
September 18, 2020 at 9:40 pm #25603
Hello Charlene and Dr. Don I retired at 60 due to ill health and was diagnosed with IPF 6mths later but the best thing I did was retire
September 19, 2020 at 10:35 am #25605
Hi Don, thank you for describing your experience. I am sure with your training and experience you have a great deal to draw from in dealing with IPF. With hope to hang in there using current medications until even more promising trials are finished, do you feel it is possible that IPF may never in the end shorten your lifespan? Lots of value to loosing weight, cutting stress, and enjoying life too. It’s promising to hear that.
The ECGC trial of only 12 participants may not show much, but at least green tea is highly accessible. The trials involving combining medications. Is that new medications that can be used with Ofev and Esbriet? Given your experience in reading the literature and working with patients over the years with various chronic illnesses, how long do you think it may be before treatments are able to stop this disease? How would inhaled Ofev be different?
September 19, 2020 at 10:39 am #25604
Karen, it makes so much sense to ask her about her feelings and reasons for not taking them. Normally I am very good at taking all day long to explore people’s choices with them. When it’s your mother…..not so easy. I guess we are both struggling. Thanks for the reminder.
September 19, 2020 at 10:48 am #25607
Charlene, if I may, I’d like to share something around stress that you mention, if it is helpful. In my view, the nuts n bolts of stress management are mostly well known: moderate work load; sense of purpose; at least a few satisfying relationships; journaling worries, stresses, and solutions; meditation; yoga; weight lifting and cardio; community and one-one support; probably lots of cruciferous vegetables; etc.
To add to this, it can be really helpful to see stress management as being action oriented, as doing things, rather than battling thoughts or getting carried away by them when they are not helpful. Trying to start with positive thoughts and feelings is usually less effective. But do the thing, and the thoughts and feelings will follow.
How to do “thing thing”? One great resource is Tiny Habits by BJ Fogg, Stanford behavioural scientist. A great simple model for starting any habit in life, starting small and building up as desired.
September 19, 2020 at 10:57 am #25608
Hello Katie, thank you for sharing your experience. I can imagine that with side effects like that, taking medications may well not always be worth it. It is not just life span but health span. I hope that the adjustments you are making and what Don has shared help you. And yes, it is possible that she has tried medications just did not share that the side effects were already experienced. That nasal version of Ofev, if little not side effects, looks awasome. I hope all goes well in phase 3. Maybe it will become available in 2021.
September 21, 2020 at 6:42 pm #25612
Thanks so much for writing and sharing your experience with us. I’m glad you were able to retire and have that be good for your health. Wonderful to hear!
September 25, 2020 at 10:17 am #25640
Thank you so much for writing and following up with me on this topic. Hearing from other patients always helps! I will definitely look into this approach re: stress management. I think it is something we can always improve/do better with. I will think about what ‘action items’ I can do to help make managing chronic stress a bit easier. Thanks again for sharing…. love the resource, too!
September 25, 2020 at 10:20 am #25641
Thank you again for writing — your experience (though career + age very different) sounds similar to me, and I’d love to change that path, as I can imagine reducing stress is nothing but good for us and our lungs. I’m working on it actively, but always am open to ways for improvement. I’m glad your DLCO improved after you made these choices to change your life, kudos to you. I am going to work harder at this…. though, as a 32 year old I have a lot of ‘working years’ ahead of me, and a need to support myself financially too as I have student debt. There is room for change though, which I can work towards….
Thanks again for writing 🙂
October 2, 2020 at 12:47 am #25696gilParticipant
Good luck and I get what you are saying.
I am not sure I agree that it is a denial issue. Of course I do understand that in many cases it is. I was a Hospice volunteer and got to meet many people during the end of life cycle. Most of these brave people had opted out of aggressive treatments and from the attitude that life is to be preserved at all costs; it isn’t denial so much as acceptance and opting for the best quality of life. I know that here we aren’t hospice patients but I think it is ok to have the attitude your mom expresses especially if she has comorbidities which may not be helped with any of the popular IPF drugs. I think it may make a difference if one has other health issues but in the end, I don’t know, I too may be in denial.
- This reply was modified 4 months, 4 weeks ago by Charlene Marshall. Reason: formatting to remove code
October 2, 2020 at 9:46 am #25698
Hello, Gil. You bring up an interesting point, one that somewhat colors my own thinking about having this disease. I have been ambivalent about transplant for some time and current conditions with COVID-19 still out there have added to my feeling that this is not the right choice for me. You may be in denial, but you may also have hit another perspective that we were not considering. Thanks for your input.
October 3, 2020 at 1:16 am #25701gilParticipant
Thank you for nice words and not easily dismissing my perspective. I suspect age, having multiple health issues, and the probability of a successful outcome colors our view. I am 73 years old, if I were younger my perspective would likely be different. If I were 30 or so, I’ve no doubt I would go for any promising treatment even if it were aggressive and painful. Today, my medical directive explicitly states no extraordinary methods or aggressive treatments.
I love life. I am grateful for so many things yet I dread my IPF worsening. A couple of years ago I let my IPF distress me so much I wanted to give up but then I came to this forum and met people like Charlene Marshall who inspires me to keep on going and I so I do. Yet, when I let myself think about it, I still dread what IPF is doing and will do to me. I won’t give up and I am open to non aggressive treatment options but I try not thinking too much about how IPF is shaping my future.
October 4, 2020 at 10:03 am #25712
October 5, 2020 at 3:38 pm #25725
I listened to my parents many years ago discuss what sort of life would be unacceptable to them and the ideas have stuck with me. Yes, we all love life and want as much of it as possible, but only so long as it is worth living. Quality of life becomes more important to me the older I get. I don’t relish the idea of what probably lies ahead, but we never really know what the end will be like for anyone. I was in denial early after my diagnosis, which is why I also think that could be part of what is happening with this lady, but your point also rings true for many people. Just like Charlene, I am also grateful for all of the many perspectives we get here, as well as the opportunity to share our own feelings and thoughts. Stay well.
- This reply was modified 4 months, 3 weeks ago by Charlene Marshall. Reason: tagging
October 6, 2020 at 2:36 pm #25732George A RydbergParticipant
I have been taking Ofev since early in 2016 right after I was diagnosed with IPF. My lung capacity has not gone down since I started Ofev. It’s painless and the patient has nothing to lose. A program helps with the cost and my insurance covers the rest. Get them to start, it is never too soon. A good lung doctor would be pushing the medicine. The disease is fatal, but with the new drugs the time can sure be extended.
October 6, 2020 at 4:16 pm #25736
Great news, George! I wounder if it’s not too much to hope for that treatments will emerge that can, in time, arrest the fibrosis. I mean, that Ofev seems to be really extending time.
October 6, 2020 at 7:32 pm #25743
This is wonderful news, thank you for sharing! I also take Ofev and *knock on wood*, I think it has stabilized my lung function too (aside from when I’m sick). So glad you’ve had a good experience with it, and thanks for sharing how it has been for you.
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