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Starting Esbriet
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Hi Charlene
I have been noticing the cold temperatures and other winter type weather in your area. We have had low temperatures too and I seem to always get cold. I too try to keep the house heat thermometer turned up a bit, but my wife always says its too hot. I try to keep peace and compromise and turn the heat down some. She tells me to put on a sweater. I have a couple I can grab and that helps.
We are about 775 miles from San Francisco, CA fire areas and about 850 miles from the Los Angles, CA fire areas. We are in the dry high fire danger area too like most of the Western US States. We have had some wildfires too, but the fires were in the mountain’s areas. Most all our wild firefighters are now in the California area helping to put out those fires. Since most of the winds are now blowing to the west, it is blowing most smoke away from Idaho, so our air quality is clear.
Yes, I have had a pretty good experience with the Pas. Most of them have been working with the doctors long enough that they seem to know what to do. If there is anything they may question, they can always consult with the doctor.
I had a follow-up appointment with the pain doctor that worked on my shoulder Tuesday. I think the shoulder shot worked a little, I’m not sure. I was starting to get a little better before the shot. I assumed I was allergic to one of the shots but wasn’t sure as I had been taking the Esbriet again for 4 days. I took some Benadryl. By Tuesday, the swellings were down. I did ask the doctor if there was anything in the shot that may have caused it. He said he didn’t think so as he always has given me the same shot in my back, neck, and shoulder 2 years before and it didn’t happen then. Other than that, he said he didn’t know what caused it.
I hope things are still going well for you. I know you are busy answering everyone all over the forum.
Until later,
Ray-
Hi Ray,
Thanks so much for your message and for following up. It is nice to hear from you!
Please excuse my brevity of this reply, as I am trying to correspond back with as many people as I can while the pain in my head has subsided. As I was saying to Paula, I’m not entirely sure if it is due to weather/pressure, dehydration, under-oxygenation or a virus I am fighting. All I know is that I am so sick of this headache; its really hard to keep up with the forums and other computer-specific tasks I am trying to do.
Right now it is so cold here, and the snow is falling so heavy that I can’t even see across the street at the moment. It is the same system likely that Paula is getting as I think this is coming up from the US Eastern coast. Fingers crossed it doesn’t dump on us too much!
Glad your air quality is clear, although my heart just breaks for those in California. I actually have a few colleagues I work with through BioNews who reside in California and are lung transplant recipients. The air quality must be so scary for them right now. Have been thinking of and praying for all in California frequently.
Glad you think the shot worked at bit, even that I would guess is some progress? Hopefully the pain has subsided for you. How is the Esbriet doses going for you? Hopefully you’ve not had any sign of trouble? Sounds like the swelling did respond to the Benadryl, which is good but I know it can be a pain to always take that with potential allergic reactions due to the drowsiness it can cause.
I’m doing well other than these headaches. Hoping I can get them under control before going away this weekend. Some friends and I are going to the States actually, so I also hope the weather isn’t too bad!
Take care and thanks as always for the lovely update 🙂
Charlene.
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Hi Charlene,
I had a contrast dye mri on my kidneys a while back and getting headaches from it, which affects many people that do this procedure. There is a lawsuit started against the company providing the product but idea if it will be successful. Just thought I would mention it in case you did this…
SteveD
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Hi Steve,
Thanks for sharing this information, that is really interesting information! I did have a contrast dye MRI on my head in June to identify any possible neuro issues following a concussion at the end of last year. I can’t imagine it is related to the dye, but super interesting… wow! My headaches may be any number of things unfortunately: a concussion, neck injury (whip lash), weather/pressure or medication related. Who knows! Thanks for sharing 🙂
Take care,
Charlene.
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Hi Charlene,
Thank you for your quick response even though you are rushed and still fighting that head pain. I hope you can find a solution that will help soon.
Thank you for inquiring about how the Esbriet procedure is going for me. So far I haven’t had any real bad symptoms except the little dizzy spell right after I take it. I’m just on that small dose now though. I increase it some next Tuesday.
I have noticed that the Nor Eastern is really going to hit the East Coast and it looks like Eastern Canada is being hit too. Hence your not being able to see across the street because it is snowing. Having to shovel the snow is no fun, as you are really aware of. Especially hard in your condition. Can you get someone to do it for you?
This front seems to be coming from the South of you now. I hope it passes your area fast enough not to foul up your trip with your friends to the States this weekend. Will you be driving or flying? If you go, I hope you have a good time. Just watch those taxi drivers!
I notice on TV we are going to get another cold storm from mostly north of us and it shows in the projection that it will sweep through Canada later this next week. Winter is here!
I’ll close now so I can maybe keep my posts a little shorter. Have a wonderful trip and weekend if you can. I will be praying for you.
Ray
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Hi Ray,
Nice to hear from you and thanks so much for your reply!
Thanks also for your kind words about my headaches: I am happy to report that today is so much better, so far anyways. I think I’ve actually tracked my most intense and frequent headaches to being at my desk so I actually asked my HR manager to have an ergonomist in to adjust my chair. It makes sense based on my elbows not being supported and it pulling on my neck/shoulders causing a headache. I’ll start there and see if it helps. For now, I am so happy that the head pain is gone as of this morning.
Well, we got absolutely dumped on with snow last night and overnight! The snow is now beautifully thick on the trees, and it is beautiful but not fun trying to drive in it. Also, I couldn’t go anywhere until someone came and shoveled my driveway (thankfully it isn’t a big drive) but there is no way I could do it by myself anymore. I get too breathless, plus the cold already makes me cough really bad. I have to figure out how to do this on a regular basis this winter though, I’ll put an ad up soon I think as I want to be proactive about it vs. reactive when we have a big storm.
Looks like it has passed us by now, and the roads are being plowed. Its very wet now as the temperatures are warming up a bit, but still classic Canadian winter. Should be fine to go to the states tomorrow as the roads are clear, which is great. We’re driving – it is about a 3 hour trip. There is an amazing Christmas store called Bronners in Frankenmuth and it is beautiful. Can’t wait!
Really glad to hear your Esbriet dosing is going okay, I will keep my fingers crossed that it remains that way for you, especially as you increase it next week. Thanks for all of your kind words, I think of you often and love being able to correspond so regularly 🙂
Take care,
Charlene.
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Hi Charlene
Thanks so much for your reply!
Very happy to hear your headaches are better today. I hope the chair arrangements request to the HR manager to adjust your chair helps. Is that the HR manager at work or on the forum?
Happy the snow has started to clear your area now even though you got a good dump.
I kind of figured out your Canada location and I see you are really close to 3 of the Great Lakes where I’m sure you get a lot of lake effect caused snow.It was nice of someone to have cleared your driveway for you. I do hope you can find someone to do it for you the rest of the winter. We have very few people that want to be hired to clear walks and drives here. I have advertised in the paper to get it done and I get no good responses. I did have one person that said he would do it but he refused to sign anything saying he would or what would trigger his start to clear it. I don’t know if he will follow up until the snow starts getting deep here. So far, no measurable snow though.
I viewed the Bronner’s Christmas Wonderland store in Michigan you are going to go to this weekend. It looks like they have everything you might like pertaining to Christmas. I hope you have a wonderful time.
I’ll close now. I know you are busy preparing for the trip.
I love hearing from you as I worry a lot about how things are going for you.
Ray
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Hi Ray,
Thanks for your message and nice to hear from you as always. I am back home now after a day trip to the beautiful town of Frankenmuth, Michigan. It was a nice day but I sure was tired after being out and about for almost twelve hours, and in crowds of people I was pretty anxious about getting sick. I wore my mask the whole time and I had my friends carry my oxygen for me, which really helped with my stamina and energy levels. The Christmas store is the biggest one in the world, and it is absolutely stunning. I was really glad to be able to go!
I have definitely tracked the frequency and intensity of headaches to my chair at work. Right now I am on a bit of a break from work to complete this next course of cardio-pulmonary rehab, but I am going in tomorrow to be assessment by the ergonomic specialist. I really think it will help with my headaches, and I am very lucky: my HR Director where I work is very supportive of all of our needs as employees.
So far the snow has stopped, although it is still covering the ground which I am okay with. It is the big “dumps” of snow that I struggle with, because as you say then it disrupts driving and requires shoveling which I can no longer do on my own. Creating some type of advertisement for my neighbourhood is what I’m hoping to actually to do today. So much on my plate, so I’m having to prioritize getting things done without wearing myself out! I hope a little kiddo in my neighbourhood can do it, and I can give them just a bit of money for it, so it is a win-win for everyone 🙂
Sorry your advertising for someone to help you with shoveling/clearing the driveway hasn’t been successful. Do you have any close friends/family/neighbours that could help you out with this? I’m sure you’ve already thought about this, so pardon my ignorance for asking.
The store was lovely, I’ll try to upload a picture in my next post … the displays were incredible at Bronner’s Christmas Wonderland with all the lights and decorations.
Thanks again for writing, I hope you had a nice weekend as well?
Talk to you soon,
Charlene.
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I tried to delete the above accidental post. Please disregard it. It didn’t work!
Ray
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Hi Ray,
Your message came through no problem, I received it! Strange that we can now type in the text box of the ‘Starting Esbriet’ conversation, but we couldn’t before. Maybe it is reaching its length capacity? Not sure but I did get your private message so I’ll be sure to write you back there momentarily! I had a really busy weekend, but it was a great one 🙂 I hope yours was too!
Charlene.
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This is only a test, had this been an actual test…………………………… message received here as well.
How was everyone’s Thanksgiving? Good I hope.
Called my doctors office late Friday afternoon to let them know I have been getting episodes of blue toes (and some times the feet) and blue fingertips. Thankfully it does not stay blue for long. And I have to talk to him about the side affect of the OFEV. The bathroom issue is really getting to be too much. The rate that I am going to the bathroom I should be light as a feather. lol
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Hi Paula,
Thanks so much for writing, it is nice to hear from you!
The forums have been ‘acting out’ as of late for some people, and not for others it seems. As an example, Ray tried so hard to write more on this forum thread and check in with us on how things were going but it wouldn’t allow him to do so. Naturally, thought the length of this forum thread may have reached its capacity from everyone contributing such great thoughts, but it doesn’t appear to the case as you were able to post! Others have had a hard time with their messages being deleted, or not reaching me at all and a few are even struggling with their login. Not sure what is going on…super strange. In any case, I am happy to hear from you!
I didn’t celebrate Thanksgiving this weekend due to being from Canada but I did have our extended family Christmas which was lovely. It was so nice to catch up with my cousins, as I really miss them in the summer months. How was your Thanksgiving?
Any update on the blue toes and fingers? As far as I understand, that is a sure sign of under-oxygenation, so I wonder if your oxygen needs have increased and your 02 should be adjusted? Do let me know when you find out if you can, that must be a bit scary? Also sorry to hear of your bathroom troubles and the side effects of Ofev… that totally seems unfair, especially given your reaction to Esbriet. Maybe the physician can lower the dose a bit and still have it be effective?
Thinking of you and hoping today was a bit better for you!
Charlene. -
Hi Charlene,
I kind of knew that you being in Canada did not celebrate Thanksgiving, but figured I would still wish that it was a good day for you.
I have not heard anything back from the doctor about the bluing. It may be like when I did poorly on the PFT and he simply addressed it when I saw him. I will be seeing him next Wednesday morning. I will let you know how that goes.
I tell people my falling into the 4% on titanium is because I am soooooooo special. I try to say that with a straight face but usually fail. lol
Mild day here today. Think I am going to try a new apple cake recipe.
Hope your having a good day.
Paulaps. no problem on my replying to Susan. We are all in this together.
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Hi Paula,
Great to hear from you, thanks for writing! How has your weekend been? I’ve actually been offline a bit the last few days which has been quite nice for me.
Have you heard anything yet from the doctor about the “bluing”? I thought that would be something they would address quickly because if it is under-oxygenation, it would be impacting your other organs, etc. Maybe because it happens quickly and then goes away, they aren’t as concerned? Not sure, but really curious to hear. When you mentioned you’d be seeing the doctor on Wednesday, was that this past Wednesday or the one coming up? Hope it went well if you’ve seen him/her already!
Mmmm apple cake, that sounds delicious! It’s very mild here today as well, its 12+ degrees which is very unusual for December weather here in Canada. That said, I think it is supposed to “flash freeze” tonight and be in the negative temperatures the rest of the week. Crazy weather, but a good day for baking. Do you decorate for the holidays at your house? I did that last weekend and now thoroughly enjoy being in the living room around my Christmas tree.
We are all in this together, I agree!
Hope you had a nice weekend,
Charlene. -
Morning Charlene
No I have not heard back from the doctor yet. See him on Wed. I have a list of stuff to talk to him about, the latest is the light headness feeling I get. Horrible.
Raining here right now, just got back from my grandson’s hockey game, going up the stairs to the seats, yes with my oxygen I was so light headed. Took me a few minutes after I sat down to get my bearings.
Not sure what is going on, but something sure is.My husband set up the tree yesterday and finished the outside lighting. He gets really into it. I used to but not so much anymore. And I definitely am not one to put up a tree this early but……..
Well have to run. Making a brunch and then clam chowder for dinner. Hope your having a good day. Talk to you soon.
Paula
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Hi Paula,
Thanks for writing, it is so nice to hear a bit of an update about you, although I am so sorry to hear you are now experiencing light headedness. Gosh, I hope that subsides for you soon and you can catch a bit of a break! Have you been able to track it to anything specific, other than exertion like you mentioned after climbing the stairs? Before I started on supplemental oxygen, I would get dizzy and light headed when I would change positions such as sitting to standing but that has been better since starting my O2. I wonder if your oxygen requirements have changed and need to be adjusted? I’m really curious to hear what the doctor says on Wednesday, I hope it is a positive visit! Please let us know if you feel up to it….
It’s very rainy here too today, and while I don’t mind the mild temperatures, it is supposed to change this week for us and usually the drastic change in temps is when I get sick. So I am being cautious about that! The last thing I need is to fall ill before leaving on vacation to NYC next week.
Hope you had a good brunch and dinner! I need to come visit your house, sounds like you are quite the cook. Enjoy your Sunday evening and wishing you a good week ahead.
Charlene.
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Hi Charlene,
Belated Happy 31st Birthday. I’m sorry this wish is late. I didn’t know when it was. I hope the celebration with you and your dog watching Christmas movies, the spa visit, and order-in dinner was relaxing for you. You really needed some good things going for you.
Really happy to hear from you as I know you really needed the rest and to get away for all the correspondence for a while. You have really been having a lot of problems going on with you that have caused you a lot of stress trying to solve what to do about those pesky new occurrences. I am very happy that some of the problems have quieted down for a while.
Thank you for your nice inquire about my wife and my health problems. My wife is still having the shoulder, back, and neck problems and is making visits to the Chiropractor. She goes to him again tomorrow. I have been taking her because she can’t boost herself into her car and she has problems even getting into the passenger seat of our other car. I think after tomorrows Chiropractor visit, he will recommend her to Physical Therapy. Her stiffness has been a little better, but she still can’t sit, or lie down, or reach things very well. I must help her put on the ice packs. She can still tape on my bandages and operate the syringes when she gives me my medications 4 times per day, but she can’t crush the pills to prepare the meds. She puts on ice packs 3 times per day for about 20 minutes on each place she is having problems and walks as much as she can in the house.
As for my sickness from taking the Esbriet at 2 pills per day. The vomiting stopped almost immediately after I quit taking the 2 Esbriet’s and I started feeling good again. I go to the pulmonologist again Wednesday. I think he said he was going to run more testing on me to see how the IPF was progressing. No, I haven’t discussed taking Ofev. I will question him about going to it on my visit. I know initially that he wanted me to use the Esbriet because it was least likely to cause me problems. I know that one of the things OFEV wants you to tell the Dr before you receive OFEV is if you have had heart attacks and that if you have a bleeding problem. I have had heart attacks and I am taking Plavix, a blood thinner. so maybe that was it. I don’t remember exactly what he had said as both drugs were new to me and I didn’t know anything about either one at that time and assumed he knew what he was talking about.
I went to my regular doctor this morning on a scheduled 3-month visit. He examined the healing scab on my neck where the other doctor had opened the spot to get to the vein to extract the IVC Filter stint. It had not been healing very well and a few days ago, festered up and some puss built up and drained a little. He said that one of the self-dissolving stitches probably hadn’t completely dissolved yet or there was something else in it. He gave me some different kind of salve to use on it other than the Neosporin I was using. He said he didn’t want to lance it yet and to give it a couple of weeks to see if it would heal up and if it showed redness or more swelling, to make another appointment.
I am happy to hear that you found someone to do your snow removal. Sounds like you and Paula have been mainly getting a lot of rain? We haven’t been so lucky, I guess. We did finally get some snow. We got about 4-inches Saturday night and Sunday morning. At about 9 AM Sunday I heard someone shoveling the snow and asked who he was. He said he was the 16-yr old kid that lives across the street. I think his mother had sent him over. Last year he and his mother came across the street and helped my wife do some of the snow shoveling. He had done about ½ of the driveway. I told him I thought I had someone hired to do it. I asked him how much he wanted to do the job. He said there was no charge and I told him I would be happy to pay him and asked how much he wanted. He kind of stuttered and said $5. I told him I’d be happy to pay him more than that if he would do it. Just a short time later, he had just shoveled most of the driveway and said he was through. I guess that was all he had intended to do. I told him we would like the sidewalks done too. He said OK and came back a short time later. I saw him talking to someone on his cell phone or he was playing a game, but he finally came to the door and said he was done. There was still a lot of the sidewalk and part of the driveway that needed to be cleaned and I pointed out exactly what we wanted still done. He finally got it well cleared and we decided we’d give him what we were going to pay the fellow we think we had hired to do it for the winter. We gave him $35. The guy we thought we had hired never did show up, so I guess we are “still out in the cold” for someone to clear our walks this winter. We did get about another inch of snow last night and this morning but no one else has been clearing their walks so I guess we will just leave it. The temperatures are supposed to be in the upper 20s daytime and close to the zeros the rest of the week. Maybe more snow Wednesday/Thursday.
Really sorry you must put up with having to go to work and having the school finances to pay along with just regular living, especially in your condition. Did you finally get your settlement for the terrible wreck injury you had last year, or are they still fighting it? I hope your attorney didn’t take everything as I know they seem too.
Sounds like you have a cute dog. My son and daughters all have dogs. My son’s dog has been costing him a fortune for medical charges. His dogs are both small Shih Tzu’s and their legs and ears are always having something wrong with them. I think they have paid as much for surgeries as it costs for his and his wife’s procedures.
I really hope you have a nice vacation with your Mom in NYC this next week. How long will you be there? I hope the weather there will be good. I notice on the TV news that NYC is having a lot of rain also. Have a good time but just beware of the Taxi Cabs.
I’ll hope this post goes OK on Starting Esbriet. It’s kind of hard jumping back and forth between both locations to see how you and Paula are doing and corresponding at a different location.
I’d better close now. I hope this isn’t too long and it still posts. Keep us posted on how things are going. I love to hear how things are going for you.
A person that worries about you,
Ray
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Hi Ray,
Thanks so much for your kind birthday wishes, I am so appreciative and as always, its nice to hear from you. I had a great birthday, really focused on what I wanted/felt like I needed that day which ended up being very quiet and calm; a drastic difference from my regular days. It was a good day and I am just hopeful that the upcoming year will be filled with lots of good for me, and for all of us. A new year (birthday or calendar year) always brings me a lot of hope, so I am trying to hang onto that.
So sorry to hear your wife is still dealing with the pain, that is terrible and I do hope she finds some relief with the chiropractor. Did he make the referral for physical therapy? Do they know the root cause of the pain and discomfort? Sounds like she is doing all she can to alleviate the pain, kudos to her as I know this isn’t always easy. Sometimes I just crawl into bed when I am uncomfortable and don’t want to do anything else. I’ll be keeping my fingers that she gets some relief soon!
Did you have much luck at the pulmonologist yesterday (Wednesday)? I’m glad the sickness stopped when you ceased the Esbriet, although I am a bit sad for you as I know we all hope we can tolerate the medication that might prolong our lives. I’d be really curious to know what the doctor says about Ofev, as I know I haven’t has as much trouble with it, but I think Paula is having a tough time so it is just how your body reacts I suppose. I didn’t know about the comorbidities that might cause issues with Ofev, so perhaps as you say, that is why the doctor didn’t recommend it at first. Curious to hear what the pulmonologist says!
How is the incision on your neck healing? Hopefully better now with the prescription cream that the doctor provided. You certainly didn’t need that to happen! Hard to believe (for me anyways) that was 3 months ago you had the stint placed already…
Yes I am thrilled about finding someone to help with snow removal too actually! It was the highlight of my day when the text message came through from a neighbour offering to do this for me. We’ve gotten quite a bit of snow through the night and into the day, although it is really pretty today (nice and fluffy stuff) it is going to cause a bit of a headache for drivers. Hopefully you aren’t getting more snow there? I was just looking at the weather next week, for when I am in NYC and it looks to be about 10 degrees C and sunny, which I’ll take for spending time outside in that beautiful city. I’m pretty excited about that! We will be there for 5 days, next Thursday – Monday so that will be really nice. My Mom is excited to go, and I’m looking forward to spending time with her there.
Re: the accident, the settlement is in process and definitely getting closer to being over. Hard to believe how long it takes, and the “fight” to even get this far has been exhausting. That being said, it’ll be nice when it is all over and we can put that experience to bed by wrapping it up with a nice cheque. It’ll also give me more to think about in terms of it will financially secure me a bit more to stop working, because there is nothing that I want more right now, especially with all the internal politics/crap going on in our agency. It really makes me value my time at home, and I just want to scream at my colleagues about what really matters in life! It’s hard because this is a gift that my disease has taught me, that others will never understand unless they’re faced with a life-threatening illness as well. Oh well, life goes on I suppose…
I’d better close now as I’ve been quite busy this week and have tons of catching up to do / posts to make on the forum. Stay warm and I look forward to hearing from you when you can.
Take care,
Charlene.
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Hi Charlene,
Thank you for taking the time to reply to my post.
I have been feeling very sorry for Paula with all the problems she has been having. I guess she is really having bad results with the OPEV reactions. I wonder how many people have been able to use either the OPEV or the Esbriet long enough without problems to have said it slowed down the IPF. Maybe someone has had some promising results from taking them but it’s hard to know for sure. I suppose in this forum, all we see is people posting problems with those drugs.
Thank you for your nice inquire about my wife’s health problems. Thurs, she went back to the Chiropractor and he looked at the results of the 7 x-rays and said for her age, the shoulder and hip joint sockets look very good. The neck and back both have arthritis in them but her back repairs she had earlier look intact. He said without and RMI on the shoulder cuff he couldn’t tell too much by the X-rays but since she is starting to gain motion in both shoulders from the stretches and icing, she has been doing, he thought maybe she should give it a couple of more weeks and if not better, he would have an MRI run on them. Today, she does think the adjustments he made Thurs helped and she seems to be moving things around and walking better. Her next appointment isn’t for 2 more weeks but she feels that she will just keep doing the stretches and icing and she might be OK.
On Tuesday evening, I started getting nauseated again and took some Zofran. By bedtime, I still felt a little nauseated but went to bed. About 1:30 AM Wednesday, I woke to feel a little acid reflux and very sick. I took more Zofran and went to sleep after a time. I still didn’t feel well Wed morning. I met with my Pulmonologist at about 2 PM Wed and I told him how I felt. He told me to stop taking the Esbriet since my sickness didn’t come up until I had started it again for a couple of times. He said even if I was able to take 1 pill per day of it that it takes 9 pills per day for it to do any good and he felt I would never be able to work up to that amount. He then said it didn’t look like I would be able to take any of the IPF drugs. He said that there was Ofev but that was out for me as it shouldn’t be taken by someone that has been having heart attacks and it causes stomach and acid reflux problems. He says he thinks that maybe the acid reflux problems that I had for many previous years may have been what caused my IPF. So, he said that since I couldn’t take the drugs, and my 0xy level was above where I would need oxygen, that I should just come in every 6 months and take the (SPV) spirometry and methacholine challenge tests and he would monitor them to see what I may need. I take my next SPV tests about the middle of January. He said there wasn’t much else he could do.
So, I guess that means an obituary for me as far as my participation in the “Starting Esbriet” Forum. I am really going to miss the friends that I have made on this forum and all the help and concern that has been given to me especially by a couple of people I have been corresponding with. You and Paula have more problems than I would ever want to have but keep plugging along giving advice to some of us that don’t yet know what real trouble means.
I am very happy that maybe your Taxi accident court case is finally ending, and you can maybe reap a little financial help from the proceeds. I’m sure the suffering has far exceeded what you may receive.
I do not know the size of the agency that you work for, but it seems that the larger they get politics starts playing with the life of its employees. Some people are just working for what their status is in a company instead of the real things that matter in life. As you seemed to put it, life-threatening diseases and other life crippling hardships mean a lot more than just what a job can provide. I really envy your resilience and stamina to help people see what life all is about. It isn’t just black and white. Just keep fighting and I’m sure you will receive more blessings than a lot of people will.
It is comforting to know that you have some help for the cold snowy weather you are having. We have had some snow and the fellow I had contracted to clear it didn’t show up when it snowed. A neighbor boy shoveled it for me for $35. I just hired and paid in advance another Landscape company to clear the snow for the year, but I must pay him $240 in advance for each month I contract with them. They figure that would cover 6 or 7 times it snows and if it didn’t, they would refund or credit me for the unused times they didn’t have to come out. I can cancel any time. I am also going to contact them for lawn fertilizing and spider spraying for 2019 too. It is cheaper than what we paid for the same service last year. I hope their service works well, I don’t want to worry about the snow and lawn care if I can get away from it. We are expected to get more snow this next Mon, Tues, and Wed. The temp is still in the single digits at night and in the 20 deg F in the daytime with some wind.
The news weather forecasts show cold and wet weather going to be covering the East Coast this next week. I hope it doesn’t last through you and your moms Thursday thru the following Monday NY visit and you are going to be doing something special there and have some fun.
I will be checking the IPF Forum from time to time to see how things are going with you and Paula. I hope Paula can get some good news when she goes to Boston about getting new lungs. She is really having a rough time of it. I also hope things continue to go well for you. You really have a lot of strength and faith that things will go well for you. My Pulmonologist told me about the same thing that you more or less stated. We must look at how well we are doing from day to day and month to month rather than a long in the future. Each day seems to be a new trial.
I’ll close as this is getting long again. All my prayers to you and Paula and the other sufferers of PF. I hope we can all survive with all the trials this disease piles on us.
Ray
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Hi Ray,
Great to hear from you! How has your week/weekend been? Sorry for my delayed response, I actually just finished two fundraising events, one this past Thursday and one yesterday (Saturday) which both were really great but it definitely took a lot out of me.
I feel terrible about Paula’s reaction to the Ofev as well! It seems as though she’s been taken off of it and seems happy with that decision in order to get a bit of a break from all the unpleasant symptoms. I sure hope they don’t start up again if she goes back on it, but unfortunately know it is a reality. I am very thankful for her and Al (another forum member) along with yourself to be sharing your experience of reacting to the anti-fibrotic medications. So far I haven’t had any reactions similar, but I know they could develop any time so I am kind of “on guard” just waiting for them. It is kind of nice to know what to expect, although, dare I say that out loud?
I am really glad that the doctor seems impressed with your wife’s diligence in managing her pain and doing her exercises to stretch her shoulders. Kudos to her for that, I know when I dislocated my shoulder that it was so important that I did the stretches but I avoided them due to the pain… probably not the right thing to do in the end. I hope she continues to get a little bit of movement, and steady improvement although I can understand wanting the MRI to find out the root cause of the problem. I am glad to hear that her sockets are in good shape, along with the repairs she previously had to her back. I will keep my fingers crossed that she continues to improve!
Ah, I’m really sorry that your sickness started up again after beginning the dose of Esbriet. That must be disheartening for you that he encouraged you to stop it altogether? Or are you relieved that you won’t experience the symptoms of the Esbriet anymore? I can see you feeling both ways, or at least I think I would if I were in your position. I have heard of acid reflux being linked to IPF, and know a few people on this forum really suffer with both and aren’t sure which one caused the other. How do you feel about the plan your pulmonologist laid out, like going once every 6 months? I hope your SPV test go well in January.
Just because you aren’t tacking the anti-fibrotic medications, doesn’t mean you have to stop corresponding on the forums, not at all :). We’d love for you to continue! There are lots of other forums, see the full list HERE for you to participate in and your contribution is always valued. Let me to try to start a conversation thread between you, Paula and I so we can continue chatting, kind of like an email but through the forum messages and we can just continue to correspond that way, even though it isn’t discussing Esbriet. Or, we can email because now I think I have both yours and Paula’s emails. Let me do that!
Your kind words about the taxi accident, and especially my work environment really touched me and brightened my day. Thank you! You’re absolutely right about the workplace, and people working for ‘status’ vs. what really matters. I used to be naiive to thinking that actually occurred at my workplace, but sadly now I’ve come to know different. If it weren’t for needing the financial stability, I would resign I think… it just isn’t worth it for me anymore, and none of my colleagues (at no fault of their own) can understand what I now value as a result of my life-threatening illness, which certainly is not working every day. I actually got so mad the other day and upset that I wrote my resignation letter, but then realized I may have been overreacting so I am in discussions with my workplace about whether not it is good for my mental, emotional or physical health to keep working. It causes me so much stress to go into work right now (maybe things will change soon…) and I hate that. Keep your fingers crossed for me that things will soon improve on that end of things!
Glad you’ve sorted out things with the snow removal and future lawncare. Its nice not to have to worry about that, isn’t it? My neighbour did my driveway the other night then text me to ask where I keep the salt so he could make sure it was safe for me to come home. I was so touched (and it was after my really bad day at work) that I cried. I am now trying to figure out what I can do to thank him for Christmas. I’ve never even met him, and he doesn’t want me to pay for it either which is so kind! A true neighbour at its finest…
My Mom and I are SO excited to leave for NYC this coming Thursday! It is supposed to be about 9-12 degrees C while we’re there, which isn’t bad to be outside in, especially if we bundle up. I hope this week goes by fast, I’m pretty ready to head out of here for a bit of a break. I am most excited about going to Tiffany & CO. (I love their jewellery, even just to look at it…), the Rockefeller tree and Central Park. My Mom is excited for everything as she’s never been 🙂
I’d better wrap this up now, I’ve had quite a productive day in getting caught up on the forums and some other work at home. I might have a relaxing evening with a Christmas movie or two with my dog; that is what seems to make me happiest these days! Looking forward to continuing to correspond with you, I’ll try to get that email thread started today.
Chat soon,
Charlene.
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Morning Ray
I am sorry that the meds are off the table for you. Maybe a page can be started for just being able to check in with one another to see how life is going besides the dealings with the IPF.Thank you for the concern you have for me, I really appreciate it and if I have not said it before, you and Charlene are always close to mind. Always wondering how things are going.
Sorry your wife is still not feeling better.
I realized by reading one of your postings to Charlene that I missed her birthday. Although to be honest I did not know the date, but HAPPY BELATED BIRTHDAY CHARLENE.
I am feeling much better since being taken off the OFEV. Sure beats running to the bathroom every time I turn around. My daughter is having a fit over it as she knows that in order to buy me time I need to be on it. But I said to her that this is just a break. BUT if being on it means having loose stools 24/7 I will take a pass. The amount of havoc that would cause my body and just the after affects of the issue are simply not worth it to me.
So Charlene, I know your busy but you really are the guru on starting threads, could one be set up where members here could check in just because? If not, Ray you and Charlene could also have my email so we can keep in touch.
Thinking of you warmly.
Paula
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Thank you for the belated birthday wishes, Paula! That is so kind of you 🙂
I mentioned to Ray that I am going to get an email thread started with the three of us so we can check in from time to time, and of course Ray is always welcome on the forums even though he isn’t taking the anti-fibrotics anymore. There is still lots for us to chat about and catch up on. You both are on my mind regularly as well.
Remember that beautiful sunshine that I mentioned in my post this morning? It has gone away now and is replaced by big thick snowflakes and it is freezing again!
I look forward to staying in touch and I hope you’ve had a nice Sunday.
Cheers,
Charlene.
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Good Morning Paula,
It appears you were up and at it early this morning. I hope it was because you had a good night’s sleep and not because you couldn’t sleep and just had to get up?
Thanks for your concern about my wife. This morning she said other than having problems moving her legs, she thinks she is getting slowly better. Again, early this morning she needed to get up to go to the bathroom and had me take the covers off her legs, so she could slide off the bed. She thinks its still problems with her hips. I think that the small amount of arthritis the x-rays showed that is what is causing her problems. The only cure for that is to keep moving until the information gets better and take pain medication her Chiropractor told her. She takes the pain meds when she goes to bed, but they wear off after a few hours. It’s still just us suffering from getting old and there is no way to change that other than the alternative. Sometimes I think the alternative might be better but when things are running smoothly, I feel its best to just push on. There’s still too much that has to be done and prepared for that event and since I procrastinate a lot, maybe it will never get done.
I didn’t know when Charlene’s birthday was either until she mentioned that she had a good time celebrating it. I guess she never did mention it anywhere in any of her posts before, so I was late with the BD wishes too. I was happy to hear she felt well enough to celebrate it.
I am happy you are feeling better now after getting off OPEV and able to get your digestive tract back to normal again. I hope your daughter will understand that being miserable all the time is just not worth maybe extending your life a little. There is no real proof that the 2 drugs they have will do what they say. Maybe the few days it might extend our lives would be a curse other than a reward.
I never had the diarrhea problems from Esbriet, but it was one that they list as a possible side effect for both drugs. Maybe I didn’t have those problems because I take Hydrocodone 4 times per day for J-Tube pain and it stopped the IPF dry cough and it causes some constipation. I too am feeling great again since stepping the Esbriet. I felt better with no more nausea the day after stopping taking Esbriet. I even felt enough better that I have fixed a dinner style lunch on 2 different days and still feel well enough after standing for a long time to eat some of it when I was finished cooking it. I try not to eat anything after 3 or 4 PM and that helps with the night acid reflux problems I seem to have sometimes. My wife was pleased as well because she is getting tired of eating frozen TV dinners and a home cooked meal tasted much better she said. She doesn’t like to cook especially when it is usually just for her because I am not hungry enough to eat anything.
It would be nice if the 3 of us did have a separate place to keep track of each other than posting it on just this Starting Esbriet Forum. I would be happy to provide either of my e-mail addresses if that would be the preferred way to keep up with how we are doing without having to take up space and posting personal stuff which is of no concern to other people. I always feel guilty about my long posts which don’t pertain to the Esbriet subject. Maybe there is a better method?
I hope your days look a lot brighter and you can keep feeling better. Keep up your good spirits. I hope things keep going well for you.
I really look forward to keeping track of you and Charlene and you are on my thoughts and prayers.
My best wishes to you and your family,
Ray
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Hi Ray
Glad to hear that your wife is feeling a little better. I take the store version of tylenol every night to help with the stiffness I have in my knees and where ever else my body decides wants to be a pain.
Very happy to hear that you have been feeling well enough to make a few dinners and eat them. Awesome news.
I never did have issues with Esbriet which made my having the allergic reaction to it all the more frustrating. . Such as life. I am going to enjoy my month of freedom of not having to take the pills and visit the bathroom so much. Like you I am not sure how much either of these drugs do. I know they are not meant to cure you or stop the progression, only to slow things down. Which so far seems to be the case in terms of the scarring. Sadly the function test said otherwise.
Here is my email address if you or Charlene would like to write me, heck I really do not have an issue with others here if they want to reach out privately. They just need to put a clue in the topic area so I know who they are.
[email protected]Well I have to run, very cold up here but very sunny. Suppose to possibly snow tomorrow. Yuck.’
Paula -
Hi Paula,
I guess it is Ok to use this forum for a little personal information too but I have been worried that people who were looking for just the Starting Esbriet subject might object. My posts have been so long and mostly on a personal way to talk to my two friends. I did send you my two email addresses via email a short while ago. The use is for your preference.
It is cloudy and cold here now too and the weatherman just said that snow was possible tonight.
Better close now. I have a couple of projects I have been doing and I’ve got the house kind of messed up.
Just Ray
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Sending an email to you both now, so we can continue chatting! I look forward to it and hope you’ve both had a wonderful Sunday.
Your friend,
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Hi Charlene,
I’ll reply now to your post you made on this forum since it will make it easier for you to see what I am responding to. Later, I’ll use the email setup we 3 have started. If I have any new Esbriet info, I will still post it here.
My weekend went well, thank you and I’m happy yours went well also
Thank you for the worry over my wife’s pain problems. That’s really kind of you to inquire.
Her stretches and ice packs have been helping her somewhat, I think. Early this morning, I woke up and found her bed empty. She said her back hurt her so bad that she had been sleeping in her recliner chair. I guess that worked because she was moving around well later this morning.
I just helped her put some strap around ice packs on both of her shoulders and upper arms. She uses the ice packs on her shoulders and then uses them on her back and neck 3 or 4 times per day. They are quite large, and she needs help strapping them on. I really think she is getting along a lot better as she doesn’t wince with pain when she moves and sits down as much as she had been. The walking and stretches etc. seem to have helped her.
Sunday afternoon my daughter and 2 of her children came over and got our Christmas tree and other decorations from the cupboards and other storage places in the basement and upstairs closets and set them up for us. They decorated the tree and hung up all the wall and lighted window hangings around the house. That really perked my wife up a lot especially since they had to make several trips up and down the basement stairs. Now, she has about everything ready for Christmas. A lot of worry and stress now over with. I hate to say it, but I didn’t even move much out of my recliner while they were working. They were fast, and it only took them about an hour. The boys are tall enough to reach all the wall hangings without using a ladder. Then when they were done, my daughter had to go work her 12-hr shift. She seems to never need or get rest or much sleep.
I hate to say it, but I don’t feel bad about having to stop taking the Esbriet. It made me so sick that I don’t miss it at all. I don’t know what it will mean in my expected life cycle, but I am so old now and I have lived a good life and feel that I have lived longer than I ever thought I would anyway. A few more months added to life over what taking the drugs would do might not have been worth it. I might be in a condition then that I would wish I was dead anyway.
I guess you are back to work again today even though it is getting harder and harder to put up with the working conditions. With the horrible health conditions, you are experiencing, I don’t know how you take it anyway. It is too bad that you couldn’t use the attempted reorganization you said you had prepared but unfortunately finances play the whole role in our lives. I am I a lot healthier than you are and I just don’t know how I could ever put the time in at a job. I find it hard to get up from my recliner just to do a few simple things around the house. I do hope your workers start to realize you have a real problem and not just get caught up in their own simple problems. I’ll keep my fingers crossed that something good will happens to you soon. Are there any disability organizations in Canada that could help you with finances if you had to leave work?
We are expecting a snow dump starting tonight but ending on Wednesday with a larger dump then. I’m happy we don’t have any doctors’ appointments this week to go to.
It is very kind of you to want to do something nice this Christmas for the person that took care of your snow removal. I am happy you live in a neighborhood where neighbors look out for you. Most of our old neighbors have moved to other locations and a lot of younger couples have moved in. The old neighbors’ get-togethers we use to have no longer exist. People seem to just stay in their houses and don’t get out. I think, since I can’t go to a lot of the get togethers that still exist because they are mostly early evenings, we just don’t get invited anymore. We always have had to decline. My wife doesn’t want to go alone. I feel guilty about that.
I think it is nice that you and your mother are going to NYC this week. I hope you have a really nice time. Your mother’s excitement about going there for the first time will make it even more of a great event. Yes, Tiffany’s, the Park and Rockefeller Center should be great to see. Rockefeller Center and that area should really be lit up. I know they have Hop-On Hop-Off Bus Tours that will take you around the city. Maybe you can pick up a boarding location and have an idea of the locations you want to visit so you could use them to get around. The people seem to be friendly there and I’m sure they will help you get around. I’ll email you a lot of the suggestion links to view if you haven’t already got everything else planned while you are there.
I’m closing now. I’ve filled this forum up with a lot of stuff now and got to get things done.
Talk to you later and I’ll also get an email sent to you.
Someone who cares a lot,
Ray
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Hi Ray,
Thanks for writing! As always, it is nice to hear from you and I appreciate the thorough update on how everything is going for you. Sorry for the delay in replying, I am trying to catch up on everyone’s forum posts (65+) since being away in NYC for a few days so this reply might be a bit short. We can / probably should move lengthy posts like this to email or a private message thread, just to be mindful of others’ activity feeds being filled with our correspondence. That said, I really want to continue corresponding with you and Paula, both! 🙂
I’m really glad to hear that your wife continues to do alright, and that the stretches and ice packs seem to help a bit. I know my stepDad sometimes sleeps in a recliner chair when his back is bad, and it says it helps him too so I do hope this remedy works for your wife. Does she use any cold/hot topical lotions? I find this really helps with pain too when it is muscular problems we’re experiencing.
That is so wonderful that your daughter helped with the Christmas decorations! I love having my house decorated for Christmas, it is such a small thing that brings me joy each evening. Who does all the wrapping at your house? Hopefully that won’t be too hard for your wife with her shoulder/back/neck issues if she likes to do it. Really glad they helped you decorate, sounds like a wonderful afternoon and happy to hear that the stress and worry over the hustle and bustle of the holidays (a very real thing for me) is a little less as a result of their help. That’s wonderful!
Glad you seem content about the decision of Esbriet. I can imagine that would be so hard for someone who couldn’t tolerate the drug, to want to be on it, but not be able to take it. Really glad you’re comfortable with the decision, and I hope it doesn’t impact your lung disease progression too much.
Thanks for the kind words re: my workplace and my health conditions. I had a very real/authentic conversation with some members of my team last week and I didn’t “hold back”. This was important to me, because I really challenged them about why/what they thought of my illness, and I hope made them think twice about why they’re doing certain things. They put some information back on me to think about too, which is fair but I felt like I said what I needed in order to move on or just “let it go”. It’s a work in progress, and I don’t think I’ll be working much longer anyways so I’ll just go in, do my job well and go home and try my best not to focus on the internal politics/negativity, etc. It definitely is getting harder, and I am very tired by the end of the day too. I’m looking forward to a break over the holidays, as our agency closes from Dec 24th – January 2nd which will be nice! Regarding the disability agencies, there are government funded disability programs in Canada for sure, which would suffice in terms of the money I’d get from that in addition to the money I make managing the forums but it wouldn’t allow much of a financial cushion, which working is allowing me to have right now. I feel much better having that ‘cushion” vs. not, so right now I am just putting up with it I guess…
I had a WONDERFUL time in NYC, can’t wait to update you and Paula about it. I’ll try to get some pictures emailed to you both over the next few days, but still trying to get caught up on everything and prepare for Christmas as well. We did so much, even the locals couldn’t believe what we accomplished and while I was tired at the end of the day, it wasn’t too much for me physically. We did: the Brooklyn Bridge, Lady Liberty, the 9/11 memorials and museum, Wall street, Times Square, Rockefeller Center (to see the tree/rink), 5th avenue shopping, Central park, the Plaza hotel, Macy’s and the Empire State building. My absolute favourite though was that we got cheap tickets to see the Christmas Spectacular show with the Radio City Music Hall Rockettes! That was absolutely incredible, and my Mom loved it. She loved the trip overall and wants to go back every Christmas, which is so amazing to me! I’m trying to figure out a way now to capture the memories of that trip for her for Christmas – I’m thinking the Pandora charm for her bracelet that is Lady Liberty 🙂
Anyways, I should wrap this up and continue replies on this forum but I look forward to hearing from you and hope everything is going well the last few days. I’ll email you as soon as I can!
Cheers,
Charlene.
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Good Morning. I started on Esbriet August 14, 2015 in the usual manor: 3 pills for the first week, 6 pills the second and 9 pills the third week, the full dosage. By November I started to notice some of the typical side effects – stomach upset, extreme tiredness, etc. These effects continued to increase, and by mid-December I had to get off Esbriet; and the side effects stopped almost immediately when I stopped the Esbriet! After discussing this with my Pulmonologist he suggested I try starting again. In the mean time I talked with a very good friend who is a NP, and she suggested I start much slower than the usual suggested process, so on February of 2016 I started with with Esbriet again, but this time with only 1 pill the first week, 2 pills the second week, etc.; it took 9 weeks to get to full dosage, but I have been the Esbriet with no side effects ever since. Obviously the slower start worked for me.
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Hi Forrest,
Thanks so much for your reply, and for sharing a bit of your experience with us regarding Esbriet. Sorry to hear it wasn’t a pleasant experience for you, especially after a few months. Really, really interesting to hear of your experience with introducing the Esbriet even slower than suggested, what a great idea / knowledge that was shared from your NP friend! I hope this helps others too, and I’m so glad to hear your symptoms or unpleasant side effects haven’t returned. Thanks for sharing this helpful information with us all!
Wishing you the best.
Charlene.
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Hi Forrest,
Very happy that it worked out well for you. My pulmonologist had tried to do that same procedure the NP suggested for you. But after I had been off from it for 30+ days, and restarted, it didn’t work. After restarting with only 1 pill per day, nausea started again the 3rd day as I said in my above post. Then my Pulmonologist took me completely off from it for good.
Maybe it is just because my pill had to be crushed and injected through a feeding tube into my intestines that caused the problem. I can’t take anything directly into the stomach and Esbriet states it is to be taken uncrushed and with food. It must just be too strong when it is injected directly to the intestines for me. It probably shocked my system too much. Some people that have been taking the full dose for a period with no side effects and all the sudden develop some bad ones and can’t go on it again.
I hope your episodes continue to work for you and you can live a long life. Keep the forum posted on any changes if you get any.
Lots of luck,
Ray King
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hi to all Esbriet users. my concern is not starting esbriet, my concern is what happens when you no longer can take esbriet because it is no longer slowing down the rate of IPF.
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Hi David,
Really good question, although not one I am sure the answer to but hope others can provide some insight for you. I’d guess the pulmonologist might discuss Ofev with you, as the only other approved anti-fibrotic medication on the market but I know it isn’t for everyone either. Are you still tolerating the Esbriet?
Wishing you the best!
Charlene.
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Good question David. Esbriet was working great for me, or at least it seemed to be. Then my body decided it no longer liked it and make me allergic to it. Then I went on the OFEV. Kind of hard to say how well its doing. Went through a very stressful period when I first started taking it (buying/selling a house). Minor side affect and then about 6 weeks ago the side affects really took hold.
My doctor did a PFT in Aug and my numbers dropped so much I am now on oxygen (3 liters) 24/7. I used to be able to take a little time off without it really affecting my sat rates but that is no longer the case. My CT showed little change. Doctor told me the PFT is more sensitive and shows stuff before you would see it on the CT.
So I am off of the OFEV for a month. And then we will try again. Hopefully the side affect of diarrhea will not come back like it was. My doctor really wants to keep me on something to help slow down the process. But as far as I am concerned if the side affects come back like they have been in the past 6 weeks, I will go off of it. The medical issues that the side affect would cause my body outweigh the benefit of the drug IMHO.
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Hi Paula,
I know your reply was to David, thanks so much for outlining your experience with both Esbriet and Ofev for him. Are you still feeling well since stopping the Ofev? I know your doctor wants you to be on an anti-fibrotic to help slow the progression of your IPF, but I also know you were really struggling wit the side effects. Hoping this note finds you doing better with that now that the Ofev has been stopped for a little while.
I am back from NYC, and will soon send you and Ray a long email updating you on the trip, but it was absolutely wonderful 🙂
Hope you’ve had a nice few days!
Charlene.
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