• Posted by Charlene Marshall on June 25, 2018 at 6:03 am

    Since being diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2016, I have experienced many physical changes within myself and a myriad of unusual symptoms/side effects. For those of you also living with this disease, I am sure this isn’t coming as a surprise to you. It is likely something you have also experienced since your diagnosis of this life-threatening lung disease as well.

    An unusual symptom that has arisen in the past few weeks for me is a painful sneeze. Unfortunately allergy season is upon us, and as a result I am sneezing more frequently and feel regularly congested. Neither of these things are pleasant for someone living with a lung condition, and often cause an increase in shortness of breath episodes, heavy chest or sore sinuses causing a headache. Sneezing never used to be problematic for me.

     

    In the past few weeks, as my frequency of sneezing increases, so does the discomfort in my chest. There is an unusual tightness that was never there before during a sneeze, and then widespread discomfort, almost painful, across the front of my chest and throughout my shoulders that exists for sometime after my sneeze as well. As a result, I try to avoid sneezing whenever possible but that is not always an option.

    I don’t remember this being problematic before 2-3 weeks ago, so it wasn’t something I ever attributed to my IPF, seeing as my diagnosis was over two years ago now. However, nothing else has noticeably changed to cause a painful chest following a sneeze so perhaps it is IPF-related?


    Do any of you experience this unusual symptom/side effect of sneezing?

    If so, when did it start and do you suspect it is somehow linked to your diagnosis of IPF/PF?

     

     

    john-styles replied 1 year, 1 month ago 6 Members · 17 Replies
  • 17 Replies
  • raymond-c-king

    Member
    June 27, 2018 at 9:44 am

    I had the same problem you seem to have explained with the dry cough and getting chest pains.  I went to my General doctor and he put me on some little round pearls, Benzoate 100MG capsules every 4 hours as needed.  I thought they might be helping but wasn’t sure as some days the coughs weren’t bad.  At night though, I still would wakeup with the bad cough.  The doctor then had me also take a dose of Relafen AC at bed time.  That didn’t really help because it seemed to cause an acid reflux problem and I still didn’t notice a change in the cough at night.

    My chest pains seemed to be getting worse and would seem to hurt on the left or right side and other times the whole chest.  I was afraid I was having a heart attack and was discussing the cough and pains with my pulmonologist.  He assured me that the chest pains didn’t appear to be caused by my heart and explained the anatomy of how the chest was constructed and that the pains were probably caused by my constant coughing.

    While he was going over the medications I had been taking he found that about 3 months before I was diagnosed with the IPF, I had been taking Hydrocodone 500/375 pills for the soreness I had because of a frozen stomach from a J-Tube inserted in my abdomen causing pain. I had been taking the Hydrocodone every day for almost 6 years and had decided to wean off from it since I had had to have the J-Tube replaced and relocated where it didn’t cause the insertion pain anymore.

    Anyway, the Pulmonologist said that maybe I should try taking the Hydrocodone again to see if that would help with the chest pain and Codeine will also help with a cough.  After about 5 days, I started noticing my dry cough had been easing up and I was now longer having the chest pains.  That was over 3 months ago that I started taking the Hydrocodone again and I have completely stopped taking any of the other cough medicines that my regular doctor had given me, and I now only have an occasional cough and have had no chest pains since.  When I do cough I finally cough up a little flem and no more uncontrivable constant coughing.

    I don’t know if it is the best way to go because in my case I seem to be able to quit taking the Hydrocodone without any withdrawal problems, but I just cannot believe how taking it again seemed to work.  It seems possible I had IPF for possibly a few years before it was diagnosed with it. The Pulmonologist said he could see some of the lung damage in some of the X-rays I had a few years back.  Just a thought.  You might discuss it with your Pulmonologist.

     

    • Charlene Marshall

      Member
      June 27, 2018 at 10:02 am

      Hi Raymond,

      Thank you so much for sharing your experience(s) with me, although I certainly wish they weren’t as difficult for you as they seem to be. Painful sneezes are a new symptom for me, and they do seem to be a little less painful at the moment, so I am hopeful that this was a temporary issue. I have experienced similar chest pains though, as you have described.

      I had to look up what Benzotate was and it appears that it is a prescribed cough syrup, is that right? I am surprised that didn’t help as some people say that a narcotic cough suppressant does help, although others say it doesn’t as well. Another thing that people often share to help alleviate a nighttime cough is adjusting their bed so they aren’t laying flat, but instead are comfortably propped up. Have you tried this?

      So sorry to hear about the chest pains! This is something I’ve experienced as well, and actually worried about a heart attack also due to the intense pain that sometimes is specific to one side or the other, or throughout my entire back. My doctor would likely agree with yours in that, the constant coughing fatigues our muscles in the chest area and it is likely the sore muscles causing the problem. It’s essentially like using a muscle during exercise that is typically unused and is sore the following day. I am so glad to hear that the chest pain isn’t linked to your heart though Raymond.

      That is so fascinating about the hydrocodone relieving your cough, I am so happy to hear this and hopefully taking the two medications to reduce the cough doesn’t leave you with any other side effects. This is something for all of us to keep in mind or potentially suggest to our own teams when trying to deal with a constant cough. Thanks for sharing, and I will keep in mind the withdrawal potential side effects as well. Thankfully, I am someone who doesn’t often struggle with withdrawal issues from changing medications but definitely good to remember.

      Wishing you well, and thanks again for writing such a thorough update for us!

      Kind regards,
      Charlene

  • raymond-c-king

    Member
    June 27, 2018 at 12:37 pm

    Hi Charlene,

    Thanks for the fast reply.

    Benzoate is a cough medication and is also known as Tessalon Perles, and Zonatuss.
    It looks like small clear capsules and is a non-narcotic oral cough suppressant. My doctor had prescribed them for me, but you can purchase them at a drug store without a prescription. They are supposed to last 6-8 hours. Mine seemed to only last about 1-3 hours if they were working at all. Sometimes I thought they were helping and other times I was not sure. Sometimes I would get another coughing spell and I felt I should keep taking them on case they were working. Some people, on another forum, said they worked for them.

    The Relafen AC is a Codeine cough syrup. I think it is just regular Robitussin DM cough syrup with codeine in it. At least that is what it tastes like. I am not sure it would have worked or not. As I said earlier, it caused me bad gas reflux at night and I would wake up from that and be coughing.

    As far as adjusting the bed head elevation you mentioned. I have been sleeping with my upper body elevated on my back in hospital type bed for over 6 years due to a botched Hiatal Hernia operation which had resulted in a frozen stomach. That is why I take all my medications, and food through a J-Tube that is installed in the top of my intestines. Mayo Clinic said due to an earlier stomach surgery, I no longer have a Hiatal mussel that stops the stomach acid coming up through my esophagus or now I just have a straight shot from my mouth to my stomach via the esophagus. The bad coughing was also irritating the opening through my belly where the J-Tube is inserted and that was why I was taking the Hydrocodone/Acetaminophen 5-325 for over the 6-year period earlier I talked about. I don’t know if the bed being elevated helped the cough or not as I didn’t have a cough before I initially purchased the hospital bed.

    Since you are a someone who doesn’t often struggle with withdrawal issues it might be something you could suggest to your doctor that you might try. I cannot believe that I now don’t have a cough or chest pain problem ever since restarting the Hydrocodone. I just take the pill 3 times per day and I only may cough a few times per day and they are just regular coughs. I think I do have a little problem with allergies that are causing those coughs as my nose runs a little too.

    Good luck with whatever you try,

    Ray

    • Charlene Marshall

      Member
      June 29, 2018 at 7:00 am

      Hi Ray,

      Thanks for getting back to me and for sure a thorough response!

      That is good to know about the Benzoate, especially that it isn’t prescription. I always like to have “tools” in my back pocket for when others ask, or when I made need relief from a newly developed symptom. I’ll add this to my toolbox, and if it doesn’t have a lot of nasty side effects then I’d imagine it would be worth a try for me. Did you take them on a regular basis for a certain period of time? It may be something I try when I have a cold, although the cough I have right now seems to be lingering and frustrating me to no end. I have a dry cough with my iPF but not all the time, and I’m wondering if its now developing and will become more persistent.

      Thanks for sharing about the cough syrup as well. Sorry it didn’t work for you, and definitely not worth continuing if it causes reflux as I’ve learnt that reflux can be worse in patients with IPF/PF, and it can also exacerbate or increase the fibrosis (from what I’ve read anyways).

      Hope the coughing subsides for good for you if it is irritating the J-tube, that must be so frustrating for you! Were you ever concerned with the Hydrocodone/Acetaminohen combination that it would be bad for your liver? I always worry about that when taking medications, although I don’t really had reason to it just always crosses my mind. I think I’ll give this a try and see it is reduces this current cough that I have, which is extremely annoying and not sure what it is caused from. My inhalers don’t seem to be helping alleviate the cough as much right now.

      Thanks again for sharing all your experiences with us Ray, and sending best wishes to you!

      Kind regards,
      Charlene.

  • raymond-c-king

    Member
    June 29, 2018 at 1:29 pm

    Hi again Charlene,

    Good to hear from you again.

    I took the Benzoate for over 2 months.  Just as a trial, I only quit taking it to see if it might be working in tandem to the Hydrocodone or if it made any difference either way.  I didn’t find any difference when I stopped taking it, so it probably didn’t help any.  My General doctor that prescribed it for me in March doesn’t know I don’t take it anymore yet because I don’t have another appointment with him until the end of July.

    I had read that Hydrocodone/Acetaminophen prescription the doctor had me take can cause liver damage.  My Gastrologist had prescribed it for me over 6 years ago and had me taking it 4 times per day. I do have yearly blood panel tests done every year to help monitor any changes and so far, the Doctors haven’t noted any changes in the liver functions.  I do see my regular doctor every four months for a checkup.  When I had mentioned about what I’d read about the liver damage to my doctor, he said they just must assess the benefits verses the side effects and make sure no damage is occurring.  That was a worry I was going to try to elevate when I weaned myself off from the hydrocodone late last year.  Then the dry cough came on and it turned out to be the IPF diagnosis.  As I mentioned earlier in a reply, I may have been going to have the dry cough months or years earlier but taking the Hydrocodone may have kept it in check as it seems to be doing now that I am taking it again.

    Yes, I had read that reflux could be a reason for IPF.  There are several things they think may be the cause of PF hence they are not sure, so they just label it IPF.  The “I” means unknown cause.  The reflux does irritate and increase the fibrosis so the cough the syrup stop was a benefit.  I get the codeine via the Hydrocodone, so I get the same benefit of the cough suppressant syrup.  Also, I was taking the syrup by swallowing it and the Hydrocodone could be pulverized and inserted in the J-Tube into the intestines below the stomach. So, I get no reflux from that.

    As I said earlier, it seems I have no more dry coughing spells and no more chest pains after starting the Hydrocodone again.  I’m still crossing my fingers, but I think it is working for me.  You would have to get the consent and prescription from your doctor, but it might be worth the try for your dry cough.  I guess Hydrocodone does have some side effects too and can be habit forming.  I never noticed any real problems other than a slight increase in constipation.  I hope, if you do start taking the Hydrocodone it works for you as it did for me.  I just can’t believe the instant and so far, lasting results I have had.

    As for the inhalers, when my pulmonologist was telling me about the medication that were available for IPF, he did point to a chart of all the Inhaler Manufactures and state that none of them seem to work for IPF.  He said they work mostly for Asimina.

    Now, I’m just working on an appeal for an Esbriet (Pirfenidone) prescription denial from my Insurance company that my Pulmonologist had prescribed for me. It doesn’t cure it, but it helps slow down the IPF progression.  It is super expensive and can only be processed by a Specialty Drug supplier.  Luckily though, my doctor just contacted me and told me he would process the appeal for me and get it sent in right away.

     

    Best of luck.

    Sincerely,

    Ray

     

    • Charlene Marshall

      Member
      June 30, 2018 at 7:24 am

      Hi Ray,

      Likewise, thanks for your reply and connecting back with me 🙂

      Great to hear of your experience with the Benzoate, thanks again for sharing. It’ll be interesting for you to inform your doctor (the one who prescribed it) that you don’t think it worked for you, and to get his/her take on the current cough relief you’ve found.

      That is also really good to hear, and likely very reassuring for you, about the liver tests being normal in your yearly bloodwork. I don’t take medications like acetaminophen or advil on a regular basis as I worry about the damage to the liver, and I know lots of people who take it more regularly than I do so likely I have nothing to worry about since they are fine. You’re right as well, I suppose the doctors would weigh out the benefits vs. risks (ie. side effects) and determine that before prescribing any medications to a patient. Interesting to hear about your cough, and the possibility to have had IPF before you were diagnosed but that the medication combination suppressed the cough. Did you have any other symptoms of IPF to suspect some sort of lung disease in the years leading upto your diagnosis?

      I have IPF as well, and for the first year post diagnosis I was determined to find out why I was diagnosed with this lung disease at 28. I never smoked, I didn’t live in any type of mould, or dusty environment. I have no history of lung diseases in my family, so it was really confusing and I wanted answers. Finally I realized I was throwing so much energy into finding answers when it didn’t really matter why I was diagnosed, the bottom line was I have it and I needed to live with it. I’ve since turned my focus from why I got it to living my best life with it. I don’t remember ever having an issued with reflux, and thankfully this isn’t something that bothers me right now either.

      So great to hear about the relief from you cough! I do have a doctors appointment coming up so I think I may discuss this with my pulmonologist, and just see what he says.

      You are right re: the inhalers not being helpful for IPF. I have 4 inhalers that aren’t dedicated to treating my lung disease, but are instead targeting the small muscles around my lungs to relax following or during a coughing fit. We thought I had asthma for a long time, so most of these inhalers are used to treat that but I do find they help at least a bit with “opening up” my airway when I am coughing a lot. Not sure if they actually do, or whether it is a psychological thing but either way I am thankful for feeling some relief. For IPF-specific medication, I am on the anti-fibrotic med OFEV. I’ve never tried Esbriet. Best of luck with your appeal from the insurance company, I hope it works out for you!

      Thanks again for getting in touch and wishing you the best.

      Regards,
      Charlene.

  • raymond-c-king

    Member
    June 30, 2018 at 3:13 pm

    Hi Charlene,

    Per your questions:

    I had no early lung symptoms before my cough developed.  I was very surprised when the doctor and tests showed I had IPF.  I too never smoked or worked around products that might be inhaled and damage the lungs.  My life long work employment was as an electronic technician and computer programmer, so I wasn’t exposed to any lung damaging environment.  The pulmonologist went over my life history and he could not see anything that might have caused it.

    I do feel kind of lucky that I didn’t get it at a younger time in my life, so it isn’t so devastating that It might shorten my life span a little.  I might just die of old age before I die of the effects that IPF causes, so I may not have to live through the loss of Oxygen that IPF seems to eventually cause.  My Ox2 readings are still in the normal range and other than the fatigue I get and cough I had, I have little to complain about.

    My doctor opted for me to take Esbriet over OFEV as he said the Esbriet had less side effects, a little easier on the stomach and it was more convenient for me to take.  Both medications retail for about the same super high cost.  As for my taking the Esbriet if I ever get the prescription. I am 83 now so taking a real expensive medication that might destroy our savings and livelihood just to add a few days or months to my life would just not be worth it.  I owe it to my wife and family to not think only of myself.

    Maybe if you are taking the OFEV it will work just as well for you as Esbriet so there would be no way to tell if a switch would do anything for you.  Are you getting adverse side effects from OFEV?

    Hope things work out well for you as time goes on.  Who knows what the future will bring.

    Sincerely,

    Ray

     

    • Charlene Marshall

      Member
      July 2, 2018 at 7:11 pm

      Hi Ray,

      Thanks for getting back to me with such a thorough reply, I appreciate it. I hope you’ve had a nice weekend 🙂

      Certainly wish this diagnosis wasn’t in your life story too, I can imagine how surprised you were when you discovered you had IPF. It is unfortunately something I’ll never forget, along with the fear, anger and confusion that came afterwards. I had shortness of breath for a solid 9 months before the urgent care centre discovered my low oxygen sats and shipped me to ER. From there it was another 4 months before I received my diagnosis, making it about  13 months since the onset of symptoms to having some answers. That whole time I thought I was going a bit crazy, because I could not understand why I couldn’t breathe as a health, vibrant 28 year old who had just landed her dream career.

      So glad to hear that the symptoms of IPF are manageable for you so far, and that you’re still able to do most of the things you want to do. I am the same way, and try not to complain because I know a lot of people have it way worse than I do. However, sometimes I get ahead of myself and have sad/frustrating days where I complain a lot Lol. I suppose we’re all entitled to those at least every once in awhile…

      What a selfless thing to say Ray, thank you for giving me something to think about re: your family and livelihood vs. the cost of medications. I always appreciate the reframe in thinking that I get from others on this forum.

      So far no effects of OFEV, it has actually been a very easy drug to start taking for me and it is doing its job as far as I can tell. Hopefully it continues to work for me – other than the cost, it has been a good choice for me I think!

      I hope you continue to do well as well, and thanks as always for getting in touch! 🙂

      Kind regards,
      Charlene.

  • raymond-c-king

    Member
    July 3, 2018 at 11:45 am

    Hi Charlene,

    We had a very nice weekend, thank you.  I hope you did also.  We are celebrating our 60th Wedding Anniversary today.  Three of our five children are coming here Thursday and reserved a place at one of our restaurants to take us out for dinner.  There will be 11 of us, including one of our daughters three children.  Two of or children are traveling quit a distance to be here. One of our daughters lives in our city and the other two kids live too far away or must work and couldn’t get off for the celebration.  They wanted to make it a surprise celebration but decided they better let us know because they wanted to stay one night overnight.  Then one of my daughters and her husband must fly real early Saturday morning to Las Vegas, NV.  They are going there for a few days to celebrate our daughter’s Birthday.

    Sorry to hear that you had to suffer so long before you got your IPF diagnosis.  I was lucky in not suffering so long with it, at least I had no cough or pain or Oxygen problems for a while, just fatigue.  I just chocked that up to my old age taking over.  Before I started coming down with IPF. I was always a fast walker and could walk for long distances without any problems.  And now, I can’t even stand very long or walk through a store very long before I must sit down.  I spend most of my mobile times going on a doctor’s visit.  My wife says she thinks I have a different doctor for every part of my body and they all setup a comeback appointment, so I’m just constantly on the move.

    As for the cost of having to take the medicine, I’m not sure yet what that may run int as far as cost but if my secondary health insurance will cover part of it I’ll see what the cost vs benefits are when I find out.  I wish they would let me know if I will even be able to get it or not.  They don’t seem in much of a hurry and I seem to have too much time on my hands to sit and worry about it.

    I’m happy the OFEV is working out well for you.  What indications have you received that lets you know it is working for you?  I kind of wonder how a person can tell.  It’s hard to tell when you are taking a medication that extends your life with PIF to know where you might be if you didn’t take it.

    I guess I’ve rambled on long enough for now.  I entered a lot of stuff that has nothing to do with PIF.

    Sincerely,

    Ray

     

    • Charlene Marshall

      Member
      July 6, 2018 at 2:40 pm

      Hi Ray,

      Thanks for getting back to me and so sorry about my delay in replying! Happy belated anniversary to you and your wife, what a milestone … 60 years. Amazing and congratulations! How were your dinner reservations and time with your children to celebrate? I hope you also had a nice 4th of July as I am aware our American friends had a holiday this week. Sounds like a nice time with family that you’ve had recently, glad to hear that and hope your lungs cooperated for all the festivities 🙂

      I had a nice weekend as well thanks, spent Canada Day on the beach with my family so I am very grateful for that. I enjoyed being in the water, especially during this wicked heatwave we’ve been having and grateful to have my oxygen in tow on the beach and in the lake. Summer seems so short, so I always try to embrace as many weekends at my cottage on the beach as possible.

      Thanks for your kind words about my diagnosis. While it felt like, and I felt kind of crazy with my shortness of breath episodes for 13 months, I am still lucky that it “only” took that long. Apparently the average time it takes to get diagnosed is closer to two years. I read that in a study somewhere, can you believe that? Glad that wasn’t your experience, and I certainly can relate about feeling like you’re always on the move for doctors appointments. I just said what your wife did the other day, “I swear I have a doctor for every organ in my body”! It’s pretty tiring keeping track of the appointments, isn’t it? I am also recovering from a car wreck so I have so many appointments for concussion rehabilitation as well. Glad the process of getting diagnosed wasn’t too difficult for you, although sorry to hear you’re also dealing with IPF.

      Regarding the medications, did they give you any kind of indication about when you would know if you can get it and whether or not it would be covered? Hopefully you can and that you tolerate it well. OFEV seems to be doing me some good in terms of stabilizing the progression of my IPF. I guess the way they measure it is through my PFTs and the assumed/anticipated decline of my lungs per the regular trajectory of this illness. I know that isn’t a good measurement because everyone is different, but I guess that is all they have to go on: my current lung functions compared to others with the same amount of fibrosis, similar demographics (ie. age, ethnicity etc) and where they are after 2.5 years. I guess the fact that my fibrosis has seemed to stabilize vs. progress is just a general indicator as well? Good question though, I need to ask this because I’ve just taken their word for it when they say it is working for me. I find myself very overwhelmed in appointments, and mentally fatigued so sometimes it is hard to remember to ask the questions I need to. Thanks for the reminder!

      Enjoy your weekend – it is Friday already! 🙂
      Take care and write any time!
      Charlene.

  • raymond-c-king

    Member
    July 7, 2018 at 1:27 pm

    Charlene,

    I didn’t notice the delay in you getting back to me.  You seem to respond in a timely manner.  I love to hear from you.  I’m the one that doesn’t know I’ve received something from you and slow to get around to reply.

    I’m so glad that you did get out and enjoy your cottage and beach weekend.  It sounds like you are close to a lake or ocean?  It’s been so hot it was nice that you went someplace where you could cool off a little.  You mentioned you had your oxygen in tow.  Are you on oxygen all the time?  How long have you had to be on it?

    It has been real hot here in the US too and the states around us have really been having their share of fires.  Our state hasn’t been so dry, so we only have one large fire burning.  It’s getting hot and dry around though, so our fire season will soon be starting.

    It was close to 100 degrees Friday and it will be in the 90s for the next week.

    Thank you for the congrats on the 60th Wedding Anniversary.  Yes, it seems now days not many couples make it that far.  The anniversary day was on the 3rd of July. We didn’t do much on the exact day.  We just went out to breakfast and then came home and started preparing the house for our kids visit which started on the 5th.  They each had their own bedroom when they were young and at home and so my wife likes to fix them up the way she knows they liked them.  We’ve been in our house for 48 years.

    We spent the 4th of July celebration just sitting and the next day kids visit preparation.  The parade, rodeos, fireworks displays, and other festivities don’t turn us on that much anymore at our age, so we didn’t participate in any of them.

    The dinner reservations turned out well.  Our kids took us to a real nice expensive restaurant for an early dinner.  There were 12 of us at the table.  I only ordered a small

    seniors 6 oz Prime rib as I can’t eat too much.  I hadn’t eaten anything that day, so I wouldn’t be too filled up.  My 80% frozen stomach will only hold about one cup of food per day. I still took home half of it and most of the side dish, so I could still be able to eat it later the next day.   Afterword, we all came back to our house because at 7 pm I had to get on my night feeding tube and take my night time medication via syringe. I am on the feeding tube from 7PM to 7AM.  It takes that long for the food I take to feed from the IV stand bag into my intestines.  We also must crush and run all my medication through the tube 3 times per day too.  It always takes a lot of gauze and tape to cover the tube up after each session.  I think I keep the local medical supply in business.  We buy the surgical tape rolls and gauze bundles by the box frequently.   Our daughter and her husband went to our son’s house for Friday night.  My daughter and her husband were going to fly out early Saturday morning, today, from there for Las Vegas, NV to celebrate our daughter’s birthday until Tuesday late afternoon.  Then they would come back to my son’s house to stay the night and then Wednesday travel in their car back to their house.

    Real sorry to hear about you recovering from an auto accident.  Were you injured severely.  Did they take you to the hospital? You must have had a lot of serious damage to require rehabilitation.  How long do you have to take the rehab?  You surely didn’t deserve that with every other problems you are having to put up with.  I surely hope you are feeling better?

    As far as my keeping track of my doctors visit.  I just try to remember to write the date on the calendar we have hanging in our kitchen and try to check it every day when I get up.  The doctors’ office usually gives us a call a day or two ahead of it also.  I guess they know how us old people forget.  I only have missed one this year and they had called me on a Friday to remind me of my Monday’s appointment and I still had spaced it on Monday.  Luckily, it was only to get a periodical hearing aid check and it hadn’t put them out very much.  The audiologist was there all day everyday anyway, so they just called me and told me to come in at a time when I was free, and they would work me in.  It only takes them about 15 minutes for the check anyway.

    As far as my hearing any information about the Esbriet.  No, they haven’t made the decision if it will be insurance covered for sure yet.  At least they haven’t told me anything.  I never know where to call to trace it down.  It seems they just keep passing the buck to someone else holding it up.  The last time, they said they were waiting for my doctor’s appeal.  He sent in the paper work about a week ago.

    It’s always nice to hear from you.  Hope things start going well for you.

    Sincerely,

    Ray

     

    • Charlene Marshall

      Member
      July 9, 2018 at 8:50 am

      Hi Ray,

      Thanks so much for your kind words – sometimes I fear I don’t reply as timely as I’d like to others so I am working on that. It is really important to me to acknowledge and write back to each person’s posts on the forum, since they give their precious time and energy sharing their experience(s), I want to give mine back as well. I always enjoy hearing from you as well! 🙂

      I am close to a great lake here in Canada, but unfortunately no where near the ocean which is my favourite place in the world. I went to the west coast of Canada (BC) in April to dip my toes in the pacific ocean and in September I’m heading to Nova Scotia to dip my toes in the atlantic ocean. I’ve been out east before (I’d never been out west though) so I am eager to go back there, even with my oxygen in tow. I am not on oxygen 24/7 but unfortunately am requiring it quite often right now with the heat and humidity of summer. Typically I am on 2LPM at rest and between 4-6LPM walking or being active. Even when I feel like I don’t need to be using it, I bring it everywhere with me as I am scared of needing it and not having it. That happened once and it was terrifying, leaving me with a bit of PTSD and in the ICU for a few days due to the urgency of needing oxygen and not having it. I’ve been using it since 2016 (about 5 months post diagnosis) but can tell my need for it is increasing. Did you say you don’t use oxygen yet, or use it periodically? Sorry if you told me this already and my memory is failing me….

      Wow, those temperatures are so hot, I hope your lungs are doing ok? Do you find you have a harder time breathing in the heat and high humidity? I’ll pray you all stay safe from any forest fires that begin due to excessive dryness. There is no rain in the forecast here for awhile either, which is kind of scary because we really need it.

      Sounds like your anniversary celebrations with your kids were wonderful, I am so glad to hear that. The ‘hustle and bustle’ of big celebrations don’t phase me any more either, and I am only 30 .. haha! I’m sure it has something to do with the exhaustion that comes from these social events for me. I much prefer quieter, family or friend-based activities than anything else these days. Hope you were able to enjoy a bit of your meal, it sounded delicious! Had you ever been to that restaurant before?

      Thanks for your kind words around the accident, unfortunately it was pretty scary. We were in an NYC yellow cab (so Canadians out of country in the US) who lost control on a curb and hit a pole head on. The seat belts weren’t working to our knowledge and the airbag didn’t deploy either so yes, all of us were sent to the hospital with injuries, although none catastrophic thank heavens. However, we’ve ended up with a huge hospital bill and some permanent injuries (I had soft tissue injuries to my legs which are still extremely sore 7 months later) and a concussion, and my two other friends were injured as well and are still seeking treatment. It was a 30th birthday I’ll never forget, but not for a good reason. It still makes me sad to think about, especially given birthdays are sacred to those of us with IPF/PF. I am feeling better mostly now, although we’re in litigation with a lawyer and the yellow cab company now to try and square off some of our bills financially cause I can’t pay the outstanding fee out of pocket, nor should I have to since I was a passenger. I also don’t want my own insurance to pay for it, and have my premium increase since this wasn’t my fault. It is tough to deal with for sure and still quite an emotional experience as I’d never been in an accident before.

      Glad to hear your medical providers call with a reminder of your appointments, this is such good practice and I wish all centers did this. Some of my doctors will and others won’t, so I try to focus a lot on multiple platforms to write down my appointments – electronic calendars as a reminder, day planners, a calendar beside my bed, etc. I like your idea of checking it each morning to review if something is on that day. I might adopt that practice myself 🙂

      Let me know how you make out with the Esbriet, I’ll be thinking of you and hopeful that it all comes through alright. Sometimes it feels like we’re just banging our heads against a wall, doesn’t it, when it comes to trying to get answers from folks? Fingers crossed it all works out for you Ray!

      Take good care, and thanks as always for writing – it is great to hear from you!

      Kind regards,
      Charlene.

  • raymond-c-king

    Member
    July 10, 2018 at 11:50 am

    Hi Charlene,

    As always it is great to hear from you even though I’ve seemed to turn this IPF subject into a personal conversation that is more suitable for information being passed via email or mail rather than an open forum where everybody reads it and isn’t interested.  The form will probably ban me but here goes.

    I’ve only been in Canada a few times.  One time in 1986 when we spent 5 days at the Expo 86 World Fair in Vancouver and then in 2009 when we boarded a 14-day Alaska cruise.  We have wanted to visit a few more places in Canada this year but our passport was expiring this year and we decided to let it expire and not go.  The only place I’ve seen a Great Lake was in Chicago.

    I haven’t been to any of the beaches on the East Coast.  We toured the North East Cost for 5 days but didn’t go to the beaches, just the famous landmarks.  We’ve been to the West Coast Beaches in Oregon, California and then in Mexico when we went on a 7-day Mexican Cruise.  We have a lot of lakes and rivers here in Idaho with nice beaches.  Not quite like the oceans but a lot closer.  I was kind of wondering if you were able to swim etc. while you were on oxygen when you said it was set to low while at the beach.  I’m not on oxygen yet but couldn’t swim anyway because of bandaging I have to wear all the time.  I’m so sorry to hear that you must be on oxygen so much at your age and must miss out on a lot of the things, possibly for the rest of your life if the medicines don’t extend PF like they are supposed to.  Such a loss of quality of life!

    I didn’t realize that the fear of loss of oxygen could bring on PTSD.  It never crossed my mind, but fear can bring on a lot of things.

    It does sound that the PF did advance very fast for you if the oxygen need came on within 5 months of its diagnosis.  My actual cough symptoms started last October but it wasn’t until February this year that it was diagnosed by my regular doctor.  Bur after going to a Pulmonologist a few months later and he reviewed earlier chest X-rays, he said I had sighs of it 2 years earlier. I think the cough and chest pain Hydrocodone I was taking squelched the signs and they didn’t appear until I weened myself off from it last December.  Now that I am taking Hydrocodone again, the cough and pains are gone.

    Yes, the temperatures are very hot here now and we are starting to get a lot of fires in our state. The news said we have 11 new fires that started just this last weekend.  We have had had a lot of evening dry thunder/lightning storms across the state the last few days. It had been cool up until a couple of weeks ago.  The East coast was getting the heat and we were setting near low records here.  I think the heat is back to stay now for the rest of the summer.  It’ll be in the mid and high 90s this week.  The heat hasn’t seemed to affect my PF that I can tell but I don’t go outside much, and we have central air conditioning in the house.  Our humidity level is very low here in Idaho, about 15-30% most of the time.  The elevation is just over 4500 feet and we live in a farming valley with mountains on 2 sides.  We live only about 2 hours from Yellowstone Park and other mountain parks are very close so when we travel anyplace to cool off, it isn’t very far, and we have air conditioning in the car for the trip.  We are kind of stay at home people anyway, so we just stay home most of the time.

    Yes, the Anniversary dinner turned out very good.  Everyone had a real good time.  We had been to that restaurant a couple of times before.  They shine in Prime Rib preparation and it was very good.  I guess it was nothing like a Facebook picture of a Prime Rib dinner with Yorkshire Pudding that my daughter and her husband had in Las Vegas, NV to celebrate my daughter’s birthday last Saturday night.  She really rubbed it in because she knows I like it.  I couldn’t have eaten as big of a slice they showed anyway but would have loved to have tried.

    Again, I’m sorry you were hurt so badly in the auto accident in NYC.  Those cabs do seem to race around.  I’m sure that you will be able to get Yellow Cab to cover the medical and possibly the recovery bills.  I don’t know what insurance NYC or Yellow Cab requires their licensed cab providers to have but I would think it would cover it. I think I heard on TV that the Yellow Cab francize is required for anyone that starts a cab business in NYC and is a million dollars per cab.

    I’m still in the dark about getting my medical insurance to cover the Esbriet.  I again received a denial letter from them Monday and gave them a call.  They said it wasn’t an official letter yet, but they were still waiting for my doctor to explain why I need it and what his diagnostic qualifications readings were.  I guess the doctor had submitted some of the needed information, but they needed a couple of diagnostic test results that hadn’t been included.  The Pharmacy person said that as soon as they receive that information, they were sure it would be approved.  I then called the doctor’s office and his nurse said she wasn’t sure what they still needed and would call and then wire the information to them.  She said she would let me know what she found out and let me know by a phone call later Monday.  So far, as usual, no call.  I’ll give it a couple of days and try to get to talk to her again.  It looks like things should work out if the doctor and the pharmacy get things worked out.  As slow as they are going, I hope I haven’t passed away.

    I guess I’d better close.  I’m sure the people that are following your topic “Painful-sneezes-since-if-diagnosis” subject isn’t really interested in my personal life and problems that don’t apply to the subject.  I feel so very sorry for people as young as you who must suffer from PF when most of their life is still ahead of them and they can’t enjoy the benefits of their younger years.  Especially when most of us older people with one foot in the grave have not experienced the loss of a good healthy life.

    I sure wish you the best and hope a few things start looking good for you.

    Sincerely,

    Ray

     

  • wendy-thompson

    Member
    December 22, 2022 at 3:38 am

    I just read this although it’s 4 years old but I am now experiencing heavy painful noisy sneezing which does cause a pain in my chest. It was interesting to know it is a symptom of PFL. Having got Long COVID too with so many different symptoms. I find I need to compartmentalise each one.

  • meredith

    Member
    December 27, 2022 at 8:22 pm

    This long series of messages were not really about PF symptoms of coughing, sneezing, breathing problems. They seemed to be about weather, vacationing, accidents, and food.

    Codeine has been a known cough suppressant for decades. Hydrocodone is a synthetic codeine. Both are schedule 2 controlled substances. Perhaps not in cough syrup. It can also be a respiratory suppressant.

    I think it’s important that we patients not discuss the use of controlled substances on the forum nor to focus on medications.

    we must trust our pulmonologists and stay away from med discussions. Even the comments on Ofev and Esbriet made me Leary of using either medication. Many new patients read the responses looking for advice.

    let’s try to stay focused.

    • christie

      Moderator
      January 3, 2023 at 4:48 am

      Medications are a part of living with this disease, and therefore are an important topic of conversation on this forum. Patients come here to share experiences, seek advice on how to deal with adverse effects, or even get advice on how to address issues with their doctors when their medications aren’t working well.

      I know that to a new patient, reading some of the conversations about ofev and esbriet might be a little off-putting, but our hope is that the new patients take the information they read here to their doctors and use it to have a more informed conversation about the medication options available to them. Knowing that changes in mediation dosage/routine may alleviate the side effects might help patients advocate for themselves with their doctor. Reading about topics like what foods help people tolerate medications might help someone overcome their side effects.

      Yes, the side effects can be nasty, but each of us will only know how we respond to medications if we try them… And you can always choose to stop if you start and it doesn’t feel good. Ultimately it’s up to each person and their medical team to decide what the best course of action is.

      Charlene and I do moderate the forums to prevent any inappropriate discussions about medication usage, medical misinformation, medication scams, etc.

  • magician

    Member
    January 4, 2023 at 8:48 pm

    At any other time I would consider my sneezing to be funny, but the pain and overall bone jarring and teeth rattling is shear misery.  The sneezing hits me with five to eight hard sneezes in rapid fire, so fast that they actually sound like one sneeze! My tongue gets caught between my teeth and my jaw slams in the same manor as the sneezing.  I loose sight as my eyes squint up and if it happens when I’m driving, God help me!  My doctor told me it is most likely a side effect of my meds and I have to adjust to it.  I know this thread isn’t really about the sneezing, but the last write mentioned it.  Diagnosed IPF mid 2017 and still dealing with life in the fast lane…lol…

  • john-styles

    Member
    January 5, 2023 at 10:58 am

    I also have the sneezing and then nose bleeds, my ENT doctor suggested Neli Med and make sure it had aloe in it, no more nose bleeds but still get some sneezing. He also told me to cut the cannela that goes into the nose back to take pressure of the area where nose bleeds can be started.

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