[Merle Sweet]

I am replying because I immediately saw “Symptoms UIP” in your heading. I am an 80 year-old male who was diagnosed with UIP in 2014 and have progressed downward over the nine years to the point I am now on supplemental oxygen full time because any exertion renders me breathless and produces substantial pressure across my entire chest. A few months ago my pulmonary doc suggested I begin palliative care. From the relationship with my palliative care doc I am now taking 5 mL of liquid morphine four times daily with the goal being to better tolerate exertion (any walking, dressing, eating, talking). The morphine has given me a sense of peace, but has not provided any help for exertion. Although I have had a living will on file for many years I have now agreed to wear a Do Not Resuscitate bracelet to notify providers if I have lung or heart issues. I will accept help from providers for any non-lung and non-heart medical issues like falling or wounds.

Since I seldom see anyone with UIP write to this site I am now hoping to hear from others whose diagnosis is specifically UIP.

[Merle Sweet]

I was diagnosed with Usual Interstitial Pneumonia in October 2014. I do not qualify for oxygen yet, but am very short of breath during any exertion. For the first few years I had PFTs every six months, but every three months during the last three years. My results show that I plateau at a given level and remain there for approximately 9 to 15 months when most or all of scores decrease again and stay at that plateau for another substantial period before another decrease in PFT scores. That continues to be my progress pattern.

For about the last two years I continue to cough up phlegm (mostly clear) within 10 to 15 minutes following consumption of any food or liquid. This often happens while rinsing dishes at the kitchen sink or upon sitting in the family room after leaving the kitchen. It is usually one or two coughs, the phlegm shoots up, and that ends the coughing.

I get these same coughing up phlegm bouts in bed just after waking in the morning maybe every other day and I also often get these bouts while reading in bed.

I have been on omeprazole for approximately six years. I had a swallowing procedure about five months ago which ultimately led to a GIs recommendation to have two procedures which are scheduled on September 15: (a) upper endoscopy and (b) manometry.

I’m hopeful that I will learn whether this phlegm cough following solids and liquids (and other times as mentioned above) is related to my UIP or if it is a separate issue.

[Merle Sweet]

My blurred vision is not permanent, at least not yet. Waking from sleep and being exposed to light are two things that will blur my vision, cause my eyes to burn, and cause tears. Many months ago I asked my eye doc about this problem and after examining my eyes he told me I had dry eyes so he advised me to use any one of a number of over the counter eye drops. I had told him about my use of prednisone, but he said he did not know anything about that medicine.   A few months later I returned to the eye doc to tell him my eye/vision issues were not resolved with the drops he recommended. He told me I needed to use drops more frequently throughout the day so he recommended Retaine. These eyedrops do not have preservatives and therefore can be used frequently throughout the day as opposed to the drops I used initially which were limited to twice a day. He also told me I had cataracts beginning to form and that could be part of the problem. I agreed to try Retaine until I see him again in August. Retaine does correct the issues of blurriness, burning, and tears, but only until it happens again which could be two hours later or ten hours later. Some days I use Retaine eyedrops only twice, other days four or five times.  So, maybe I do have dry eyes and the beginning of cataracts, but based on the literature prednisone is known to have vision side effects. I will share my eye experience with my pulmonologist when we meet in August and am hopeful he might be able to recommend a steroid medicine to replace the prednisone I am on that does not have vision side effects. It would be a real bonus if another steroid did not cause sleep issues as well. Wishing you all the best Sue.
Merle

[Merle Sweet]

Hi Charlene,

I will definitely report back after I visit with my pulmonologist on August 18.

Merle

 

 

[Merle Sweet]

Hi Charlene,

I was diagnosed with IPF in October 2014 and tried Esbriet not long after, but was unable to tolerate side effects of nausea and diarrhea. My pulmonologist suggested reducing the dosage, but side effects remained. I decided to stop taking Esbriet because quality of life was more important to me than duration of life.

My IPF progress based on PFTs had been quite slow until about a year ago when numbers worsened. In response my pulmonologist started me on 10mg of prednisone. We believe prednisone has been helpful, but about once a month during this past year symptoms (coughing – both dry and productive, wheezing, and labored breathing) increased rapidly. During those increases of symptoms I was put on a burst of prednisone (40mg for 3 days, 30mg for 3 days, 20mg for 3 days) before returning to my normal 10mg daily. The burst and tapering back worked every time I had an episode.

I have not had an increase in symptoms for the last two months, but I do have side effects from the 12-14 months on prednisone: (1) weight gain (more than just an increase in appetite), (2) blurred vision, and (3) sleep disturbance. I plan on asking my pulmonologist in mid-August if he feels there is a medicine available that would give me the benefits of prednisone, but without the side effects.

Who has found a substitute for prednisone? Thanks much!

 

 

[Merle Sweet]

After reading many positive responses on this thread to laser treatments I am thrilled to announce I have elected to participate in Dr. Hall’s laser study. I selected a chiropractor who has extensive experience using her clinic’s programmable class IV laser on neuropathy patients and she is delighted to do her part in the study. I am confident she will follow Dr. Hall’s therapy protocol as prescribed.

I had my first treatment this morning and it went very well. The doc had the laser programmed when I arrived so it was a very efficient application of about 4.5 minutes each on the front and back of the left and right lungs. I have two more sessions this week and will continue with three sessions weekly for four weeks when it reduces to two sessions per week. I am already looking forward to my next PFTs on October 31 in order to compare those results with prior PFTs.

Many people have reported “feeling better” following treatments. I hope I have the same experience, but I wish there was an objective measure to “feeling better.” Any suggestions?

 

 

[Merle Sweet]

A huge thank you to both Steve and Lawrence for submitting your respective stories. Steve, I am eager to talk with my pulmonologist about the interventions you mentioned. It is nice to know about the possibility of several options. Lawrence, my wife provides magnificent support, but I feel guilty about transferring my lifetime role of caregiver to her. That was not in my long term plans. We decided to get ahead of the curve two months ago when we had a Bruno stairlift installed in our 2-story home. I had hoped to put off using it on a regular basis because I felt the exercise of walking up and down the steps is good for me, but during this current bad spell I am having I am so glad we have the stairlift in place.

Thank you both for making my day.

Merle

[Merle Sweet]

Thanks Rob, I will talk to my pulmonologist about Mucomyst.

Merle

[Merle Sweet]

Thank you for commenting Mark. I will be calling tomorrow to seek another pulmonary function test. Merle