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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

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