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    • #27998
      Bernard McKenna
      Participant

      Hi

      I am 61 years old and was diagnosed with IPF in March 2018 and went on to Ofev (Nintedanib) here in England in November 2018.

      In November 2020 my FVC was 67% down from 74% in November 2019.  In October 2020 I had my flu vaccination and for the first time my pneumonia vaccination at the same time.  After the vaccination I had what I believe to be an exacerbation.  That night I was shivery and cold but that went away after a day however my lungs felt uncomfortable and I begain to suffer with bloating which was uncomfortable and caused me to belch often.   By November 2020 when I saw my consultant I was feeling a lot better but since January 2021 this has returned.  After my first covid vaccination on 4th February 2021 I again felt shivery but not as badly but the feeling of my lungs hardening and the belching has got worse but what has now occurred is that I cough during the night when lying down to sleep and first thing in the morning for maybe 5-10 minutes and then on and off during the day.  If I go to the toilet I immediately start coughing after a bowel movement.  The cough is a productive cough and I have been prescribed Carbocisteine 375 mg capsules 2, 3 times a day to loosen the phlegm so I don’t cough so hard and Colpermin which are peppermint oil capsules 1, 3 times a day to relieve the belching.  I am due to have my 2nd Covid vaccination shortly.

      I suffer with diarrhoea around 3 times a week as a side effect of the Ofev and take loperamide for this which works.  Occasionally I vomit and take lansoprazole once a day 30 mgs to stop this from occurring more often.

      I feel that my walking is slowing and I am getting out of breath when I wasn’t before and if I lean over and brush my ribs against the arm of a chair it is sore and hurts.  I don’t know if this is caused by my lungs hardening or them touching the chest cavity.

      I feel my breathing is more shallow then it was just 3 months ago.

      Is this all part of the progression of the disease.  I only see my consultant once a year and in the 6 months period in between go to a nurse led clinic.  The problem is I find that the consultant is always busy and does not want to get into a deep discussion about my condition as she has other patients waiting and the nurse only asks me how I have been since the last visit to the consultant and makes notes but nothing else.  So it is very difficult to get definitive answers from them.  I am due to see the nurse later this month (April 2021).

      It is also worrying as in the UK if you decline 10% or more while on Ofev they take you off the medication which as far as I am aware no other country does and I think that is all down to the cost of the drug to our health service.

      I am still working full-time but am concerned as to how the disease is progressing.  Any comments would be helpful particularly from those who are having the same experience.

    • #28006
      Jonathan Poland
      Participant

      Hi Bernard,

      I’m sorry to hear that you are having these problems and are also having difficulty getting answers from your professional staff.  (I wonder if that is universal?  I’m in the states and have a similar difficulty getting answers…)

      Here in the US, most medical professionals would not recommend getting the flu and pneumonia shots at the same time because it is such a shock to the system.  We also get 2 pneumonia shots spaced 12 months apart.  Is that the same in the UK?

      I have a similar coughing issue as you and have found that drinking plenty of fluids helps.  I usually drink 10-12 8oz (250ml) glasses a day – including one right before bed and one immediately after waking.  I think that would be especially important for you since you have the diarrhea side effect of Ofev.

      Every pulmonologist is different in the methods they practice.  I get a pulmonary function test (PFT) every 6 months.  My most recent was just this Tuesday.  While my FVC % did drop the doctor stated that it was well in the range of the test’s accuracy and not to worry.  He also suggested that I would do better to concentrate on the actual FVC volume rather than the %.  i.e. 3.02l vs 61%  That’s because the volumes are more accurate then the % which can vary by machine type and location.  Anyhow, my doctor wouldn’t be concerned about a 7% drop unless it consistently got lower after several PFT’s.

      Regular aerobic exercise at the level you can tolerate is a great way to increase your FVC.  Here in the states many hospitals offer “pulmonary rehabilitation” that are primarily structured exercise programs designed to teach you how to safely exercise to improve lung function.  It has been the single most important thing I have done to cope with my disease.

      Also, my employer allowed me to switch to part-time in December.  I’m 66 and feel that working is good for my mental well being, but I could no longer handle the grind of full-time.  I’m sure that making the decision to stop working will be difficult for you too.  But at some point it becomes a question of income vs quality of life.  I have decided that the day I start Ofev will be my last day working!

      Good luck.  You have found a friendly group in this forum that is more than willing to share your struggles with your disease.

      – jon

      ps Be sure to let us know the results of your next PFT.

      • #28010
        jim nox
        Participant

        Hi Bernard. I do regular 6 Minute Walk Tests in an attempt to get/keep an objective handle on my status. About 5 days after getting the 1st Moderna Covid vaccine shot in early January, I noticed an increased shortness of breath and more frequent need for oxygen. Sure enough, when I performed the regular 6 min walk test, I discovered a loss of approximately 15% from my pre vaccine tests. That loss has remained steady since then. I consulted with my pulmonoligst about my suspicions that the covid shot (although I was otherwise symptom free) had further damaged my lungs and produced additional scarring and that I was reluctant to risk further damage/decline by taking the second shot. He agreed. He advised that the first shot was probably worth the damage since Covid itself would kill me for sure. But the second shot might not give enough additional protection as to be worth the risk of further damage. I suggest you take this up with your Pulmonologist before actually taking the second shot. Also, if you have any routing testing or other metrics, I suggest that you get an update to determine how much damage/decline has occurred and to get a new baseline for future comparasion.

        Good Luck.

        Jimnox

    • #28005
      Bill Mattila
      Participant

      Bernard I’m sorry that they do that. I guess money is more important, we get Charged 11 thousand US dollars a month. My insurance is good so I only pay a low copay. I too suffer from side effects that most people do even the gas and bloating. I have had exrabations a few times it isn’t nice. I’ve had the IPF for at least 15yrs or so and I still have strength to do daily things, but a number of things keep me from other things.So I wish for you that don’t be scared of doing things, I do things slower and sit when you run low on o2 I use mine off and on especially at night. Don’t turn down the breath of life. I’m 78 and looking for today only.  That’s all we can serve…. Good Luck mate. William Mattila

    • #28009
      Bernard McKenna
      Participant

      Hi Jon and Bill

      Many thanks for your replies they have helped me a lot.

      My General Practitioner (MD) just arranged the flu vaccination, they do everyone over 55 years each year in the UK in vaccination clinics and I asked for the pneumonia vaccination as my husband received it the previous year as he reached over 70 year old so having IPF I asked for it and they just gave it to me at the same time.   My consultant (pulmonologist) just said that ‘perhaps it was not a good idea to have them together’ when I mentioned it.  In the UK they state the pneumonia vaccine is once for life so I don’t think they will give it to me again.

      It is good to know that people have the same experience of bloating with IPF and with a productive cough bringing up phlegm as I hear so much about a dry cough and mine is the opposite with clear phlegm.

      I am going to endeavour to exercise more and go for walks which has been difficult here in the UK as we have been in lockdown due to high covid rates but they have dropped like a stone due to the vaccine and we come out of lockdown on 12th April.  I’ll also drink more water I do drink a lot of tea with milk and soft drinks but may be water is best before I go to bed.

      We have a national health service so if a person is over 60 years old all medication is free and below that there is a not very high fixed charge per item but Ofev is free regardless of age but unfortunately whether you receive it depends on your FVC and how that is maintained.

      It is great to hear Bill that you have survived IPF for at least 15 years.  The first doctor I saw which was in fact a private pulmonologist so I had to pay to see him just told me to go for a CT scan and gave me an old leaflet about IPF which he pulled from his top pocket to read whilst I waited for the scan.  I read it thinking nothing of it until I read it was a terminal illness with a life expectancy of 3-5 years from diagnosis.  He never even mentioned it to me.

      I am trying to stay positive about life but just being able to share experiences is a great comfort.

      Bernard

       

    • #28014
      Pete Besio
      Participant

      @bernardmckenna

      Bernard,
      I would like to address the concern you raise about only seeing your consultant once per year, and when you are able to see them, they don’t have time to go into depth on your health concerns. As patients, we all wish we could spend more time with our doctors. In reality, the practice of medicine is a business, be it private practice medicine or government sponsored medicine. Resources are limited.

      When I was diagnosed with IPF about 8 months ago, my pulmonologist immediately recommended that I seek care from a teaching hospital with IPF expertise and/or partake in a clinical trial. He told me that either of these avenues would be able to spend much more time helping me than he could. I didn’t understand what he was getting at…until I enrolled in a clinical trial. As part of the clinical trial, I visited the clinic every 4-6 weeks. At each visit, my lung capacity was measured, blood analysis and urinalysis was performed, and I was given a physical examination by a doctor with extensive experience with IPF. I can’t overstate how comforting this care was. I felt I really had my finger on the pulse of my health. Unfortunately, that trial has been cancelled. I am now aggressively seeking another trial to become involved in. I HIGHLY recommend seeking a clinical trial out in your area. Here in the US, clinicaltrials.gov is a database of all trials in the US. Perhaps you can find a similar site in the UK.

      Personally, I would be really uncomfortable going a year between Dr. visits. While I was on the trial, my doctor and I agreed a visit every 6 months was sufficient. Upon trial cancellation, I scheduled an appointment with him to determine the frequency of my exams.

      Also for me, exercise has been critical. I feel much better when I exercise. If exercise isn’t an option for you, pulmonary rehab is a good start.

      Good luck, you will find a lot of support and good information in these forums.
      Pete Besio

    • #28032
      Marianne
      Participant

      Bernard –

      Sorry you are having issues with IPF and doctor availability.

      I am in the US.  I was diagnosed in May 2019 with IPF.  I see a pulmonologist at a local teaching hospital which has a lung clinic.  He has been wonderful.  I currently see him every 6 months and have PFT every 6 months.  Blood work every 3 months.  My doctor always is available to answer questions – either by email or phone.  He takes his time each appointment.  My last appointment with him lasted 25 minutes.  I have had appointments that last 45 minutes.  I take OFEV and was recently prescribed oxygen on exertion.

      There should definitely be someone that you can call, text or email as needed.

      Hope this helps.

      Marianne

    • #28696
      Jeff Taylor-Jackson
      Participant

      @bernardmckenna

      Hi Bernard,
      I too am 61 years old and in England. I have just been diagnosed in April 2021 and I am at the start of a bunch of tests to try and work out how progressive this stupid IPF is.
      I had been trying to get to the bottom of the constant cough and breathlessness since December last year, with Covid and all, my GP either did not answer the phone, or did not call when they said they would. Of course there were not appointments at the surgery. All I got was “you can do an Econsult” from the receptionist. This is impossible if you need a GP to listen to your chest. The NHS is great (My daughter works as a paramedic) but it’s a bit broken in some places. My consultant has referred me to the local University hospital as they have a centre of excellence for this stuff. I will keep my consultant at the local hospital as he will be collating the results of my tests. I had a Lung function in May, tomorrow, I have to wear a monitor for 48 hours to check oxygen etc. In August I have another Lung Function test, so I hope to see the consultant soon after that.
      I am sorry to say, I have had issues with the NHS in the past with my wife when she was seriously ill. You virtually have to make yourself a PITA to get anywhere. I am quite shocked at the statement you made that your consultant is “busy”. I’m sorry but he/she should be top of their list to everyone they are a consultant for. That includes you. You should be made to feel that they 100% care about you and should give you all the answers you want and need, it’s your life after all. I would be a bit more stroppy with them if you dont feel you are being treated that well. Ultimately you could ask for another consultant or be transferred to another hospital to be put into the hands of someone who actually cares about you.
      I must say my consultant is 100% a top bloke, even though I have only had one consultation with him so far. I guess I have been lucky.
      We are in the same boat mate and we have to make the best of a badly dealt hand.
      Best regards
      Jeff

    • #28700
      Bernard McKenna
      Participant

      Hi Jeff

      I had my 6 monthly lung function at the end of April.  I had to point out to the secretary from Churchill Hospital in Oxford where I attend that a phone appointment was no good and I should have a lung function test and the letter from them stated I was to have this.  After she checked with my consultant I was then sent for a lung function test and then had a nurse led phone appointment.  My FVC had reduced to 61.5% but they have decided I can stay on Nintedanib (Ofev) and my meeting with the consultant is in November as I only see the consultant once a year.  They have sent me for an encardiogram for my heart then rang me last Friday to state that I should have had blood tests and I needed to arrange these urgently.  I know in particular they look to see if the drug is affecting my liver.  Apart from putting me on Nintedanib in November 2018 and keeping me on it they don’t seem to do much.  I have put myself forward for clinical trials both at the Churchill and the Royal Brompton in London but I am yet to hear fully from them.   There was to be a clinical trial on an anti-cough therapy at the Churchill starting in May this year but we are now in June and I have not heard further except after a reminder they have told me that the Doctor leading the trial is on holiday for 2 weeks but I am going to chase this up again.  Prior to being with the Churchill in Oxford as I work near Manchester I attended Wythenshawe Hospital there but found the consultant to be very abrasive and not friendly in her attitude.

      I don’t have a dry cough it is a productive cough and it is mainly in the morning upon waking up and for some unknown reason after a bowel movement.  As my cough is productive after 2 attempts to speak to a nurse about this I was told to contact my GP (MD) to get prescribed Carbocisteine 375 mg 2 twice a day.  It does not stop the cough but eases getting phlegm up.

      I hope your lung function tests go well.

      Best wishes

      Bernard

      PS I like the PITA bit.  I may yet have to try it!

    • #28711
      carol brusseau
      Participant

      i always feel better when exercising.  i was up to 20 non stop walk but my bpm went up to 146 and my oxygen dropped to 73.  does this happen to other people? i was diagnosed with pf in 2019. was put on oxygen in 2013.  my oxygen machine is set at 3 1/2 now.  it started at 2.  how do other people exercise?

    • #28752
      Kate Smithson
      Participant

      Carol:

      Are you walking/exercising WITH oxygen?

      My pulmonologist prescribed using oxygen during exercise, to try to keep the saturation levels above 88.  Mine had dropped to 78 while I was doing the 6 minutes test and while I walked outdoors for exercise. I said I stopped when I felt out of breath and resumed walking when the oxygen levels returned above 90 (this was usually in a minute or two). He indicated I was OK without it as long as the levels came back quickly and I was careful to monitor it. I take my oximeter with me when I walk.

      I’ve resisted starting oxygen but feel that the time is coming when I’ll need it especially when air travel resumes.

      I’m  in Canada and PF tests are normally done every 3-4 months. The pulmonologist (consultant) interprets the results afterward, comparing results and general progression of the disease. Tests have been a little less frequent during COVID, and consults have been by phone, but unhurried and all questions are answered.
      I’m nearing 3 years (August 2021) since my diagnosis and have been on anti-fibrotic meds for 2 1/2 years. I started on OFEV briefly but discontinued due to a ‘possible’ angina-like reaction. (This was a precautionary measure as cardiology tests indicated no evidence of further heart issues.  It may have been totally unrelated or a GERD symptom.)   I then switched to ESBRIET for the past two years.  Both my pulmonologist and I believe that this drug therapy is responsible for minimal change in my test results. I also had a HD chest CT scan last November and again almost no change was noted re fibrosis in the lungs., from the time of diagnosis.
      I have also been very blessed to have minimal side effects from either approved drug and  to have the drug costs covered by the government.  As in UK, the benefits must be shown through annual testing, but as I have 3-4 tests per year, one lower score doesn’t negate all.
      My biggest complaint, like most of the other participants is the productive cough -some days worse than others.  I notice that almost nobody in this thread has the dry cough that is usually listed as a main feature of IPF.  So far, a daily allergy tablet, Dymista nasal spray, Fishermen’s Friend lozenges and Mucus Relief cough syrup (taken occasionally) have reduced post-nasal drip (which I never had prior to IPF) and kept the cough and clear mucus manageable, though still annoying.
      Drinking plenty of water does seem to help.
      Again, my pulmonologist reminded me that all coughing is not necessarily a sign on of increased fibrosis.  Other common causes are post-nasal drip, particularly when there is clear mucus produced, allergies and gastric reflux (also common in 80% of IPF patients).

      I would encourage anyone who is offered either of the approved anti-fibrotic medications, OFEV or ESBRIET,  to try it. While 35% of patients are reported to have side effects, that leaves 65% who don’t!   If you can tolerate the drugs, the benefits seem to be considerable.  My tests all seem to be within the normal range of acceptable variation, with a slight overall decline in almost 3 years.

      I love the encouragement and optimism of the participants in this forum.  Thank you all for sharing your journey, your helpful ideas, and your spirit!

      Kate

      • #28754
        carol brusseau
        Participant

        Kate,

        yes i walk with oxygen. my machine is sit at 3 1/2 now.  i have been on oxygen since 2013. started at 2 liters.  i have been on esbriet also since 2019.  very little side effects also. i have dropped as low as 69 os during excercise/walk. Within a min of sitting the os will go back up to 90 or so. i was wondering about my bpm rate.  do u check yours while walking?  as far as the cough goes, i m very use to it.  happens when i wake up most of the time

      • #28897
        Anonymous
        Inactive

        Hi Kate, thanks for the information you shared, its great to hear some positive things about the medication rather than just negative ones. It is true that the majority of people tolerate them AND it stabilizes their fibrosis, cant be said enough.

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