[Alfred Arnold]

Kim was a compassionate warrior and a source of comfort to all those who follow this forum. We mourn her passing but celebrate a life that touched so many. I didn’t get to know Kim, but knowing how much she meant to you Charlene, I would just say be strong and continue the fight against this disease. Kim would have it no other way.

[Alfred Arnold]

Hi Charlene,

Thanks for your comments on my immunotherapy. I’m going to have another go at it in January. I’m sure that by placing the return needle in the top of my hand will not be painful and will work well.

I’m very interested in Mike’s IPF experience. It seems similar to mine. I don’t have the device that allows me to check my oxygen saturation, but it is checked frequently when I have various doctor visits and it is always steady at 98%.

Al

[Alfred Arnold]

Hi Michael,

The topic about the progressive nature of IPF is of much interest to me. I was diagnosed with IPF following chemo therapy for metastatic prostate cancer in December 2017. A CT/PET scan was of concern to my Oncologist who recommended I see a Pulmonolgist. The Pulmonolgist ordered a high resolution CT scan from which my diagnosis was confirmed. I had an initial breathing test which also showed I was below normal levels for my age (I just celebrated my 70th last month). He put me on a course of Esbriet, which after about 2 months I had a very bad allergic response – hives everywhere followed by scabs and terrible itching that made it difficult to sleep.

After about 3 months and 2 courses of diminishing Prednisone dosage the problem cleared up. My doctor wanted to put me on Ofev, but I wanted to repeat the initial breathing test before going that route. As it turns out my breathing improved about 15% from the initial values and we decided to watch rather than add new meds. I am scheduled for a repeat high resolution CT scan in February. To date I have not experienced any of the common IPF symptoms. My oxygen content has been steady at 98-99%, I walk about 5x per week for an hour and have no shortness of breath and I do not have the dry cough that many others exhibit. I do have slight crackling in the lower lobes but it has not gotten any worse. Yesterday I spent about 3 hours cleaning up fallen leaves and feel fine today.

While the IPF diagnosis still looms, my major concern at the moment is the advanced prostate cancer. I was scheduled for immunotherapy (Dendreon, Provenge) and went to the first collection last Monday. It turned out very bad. I fainted and lost consciousness after severe pain from the return needle and had to be rushed to the ER. I was released about 6 hours later with all vital signs and blood work normal. It was chalked up to a vagus nerve reaction. I will try again in January.

I will definitely report back to the forum following my February testing.

Kind regards,

Al

[Alfred Arnold]

Hi Charlene,

Mike and I have been friends for 25+ years. We live in the same town in North Jersey. My IPF seems not to have progressed any further than when it was first diagnosed in December 2017. If you recall, I had a very bad allergic reaction to Esbriet and have since stopped. My doctor wanted to put me on Ofev, but I asked that my pulmonary function test be repeated first. This was done 8/17/18 and my results were improved over the initial readings. For this reason we decided not to start any new medication until after repeating the high resolution cat scan in February.

Next week I am starting an immunotherapy treatment (Provenge) to deal with my metastatic prostate cancer. This involves three collections followed by three infusions. White cells are removed and sent out to be tagged so that when reintroduced they will recognize and hopefully neutralize the offending cancer cells. The collection/infusion sessions are spaced out by 2-3 weeks. I am hopeful that the treatments will keep the disease at bay for an extended period.

Hope you enjoy your time in NYC. Christmas time is very special in the Big Apple.

Cheers,

Al

[Alfred Arnold]

Hi Mike,

Of course I know your story 1st hand, being a long-time friend and person who also was diagnosed with IPF. Over the past year I painfully witnessed your decline and was so glad to hear that you made the decision to seek a transplant. I was absolutely stunned when your wife (Pat) contacted me with the news that you were rushed to the hospital in the middle of the night – 24 hours after being put on the transplant registry!!

When we spoke by phone last week, I was so happy to hear your voice minus the cough and labored breathing. I am not a very religious person, but your experience gives me pause to reconsider that miracles are possible and truly exist. Pat has always been very supportive of me especially many years ago when I was laid off work at age 50 and more recently when she found out that I was diagnosed in December 2017 with IPF. You are blessed to have such a woman who supports and believes in you and has a strong faith in God.

I look forward to visiting when you have regained your strength and resuming our lunch meetings again at our favorite Italian restaurant.

I am certain that your courage and determination will inspire hope in others on this forum to believe that miracles do happen! God bless you Mike!

Al

[Alfred Arnold]

Hi Charlene,

Good to hear from you. I hope you have recovered from your recent setback.

I am still battling with the itching and scabs from the Esbriet adverse reaction – very annoying and difficult to sleep. I am seeing improvement – definitely on th mend. Stopped taking Esbriet on 5/31. Will not make a decision on OFEV until my next visit in July. Discussed having another lung capacity test before going on another oral medication. Esbriet caused my liver enzymes to be significantly elevated.

Another song you might enjoy, which I added to my favorites playlist – Mull of Kintyre. Written by Paul McCartney and Denny Laine of the band Wings. It was the biggest hit in Britain where it became the 1977 Christmas number one, and was the first single to sell over two million copies nationwide. It’s an ode to the natural beauty of the picturesque Kintyre peninsula in Scotland.

Kind regards,

Al

[Alfred Arnold]

After being diagnosed with IPF it made me think of my mortality.

I told all members of my immediate family that I would like “The End of the End,” by my favorite musical artist – Paul McCartney played at my funeral. The lyrics are uplifting to me and I would hope comforting to those I leave behind:

At the end of the end
It’s the start of a journey
To a much better place
And this wasn’t bad
So a much better place
Would have to be special
No need to be sad

On the day that I die I’d like jokes to be told
And stories of old to be rolled out like carpets
That children have played on
And laid on while listening to stories of old

At the end of the end
It’s the start of a journey
To a much better place
And a much better place
Would have to be special
No reason to cry

On the day that I die I’d like bells to be rung
And songs that were sung to be hung out like blankets
That lovers have played on
And laid on while listening to songs that were sung

At the end of the end
It’s the start of a journey
To a much better place
And a much better place
Would have to be special
No reason to cry
No need to be sad
At the end of the end

[Alfred Arnold]

Hi Paula/Charlene,

Sad to say I restarted Esbriet 267 mg tablets on May 17 and had to stop on May 31. I started as follows:

Thursday 5/17/18, 1 tab/2x, Fri – 1 tab/3x, Sat – 1 tab/3x, Sun – 2 tab/3x, Mon – 2 tab/3x, Tue – 3 tab/3x, Wed – 3 tab/3x. Thereafter 3 tab/3x until May 31.

Rash (hives) started again with itching, primarily in areas prone to sweating – underarms, chest, groin. On June 1 I went to my family physician because it looked like a yeast infection was starting in the genitalia. I was prescribed Clotrimazole and Betamethasone Dipropionate Cream (antifungal). After 2 days the burning and build up of white material (yeast?) subsided, but the hives remain. I had an additional complaint on Friday’s visit – a blocked right ear for which I was prescribed Debrox (Carbamide Peroxide 6.5%) to remove ear wax. So far the blockage remains and I have only partial hearing in the right ear. I will probably go back Monday to have the ear irrigated and flushed out. I started using the cream again prescribed by my Dermatologist for the hives (Triamcinolone Acetonide). I will refuse to take Prednisone again.

I’m not sure this episode is related to Esbriet, but I have stopped taking it and will not continue with this drug. I’ll talk with my Pulmonolgist on the next visit (July 24) to see if he wants to switch me to OFEV. I am not having any other symptoms related to IPF at this time. No shortness of breath or dry cough. My oxygen saturation is holding at 98%. Even though the high resolution CAT scan indicated IPF, I still wonder if the diagnosis is a false positive or if I am at the earliest part of the condition and not showing outward symptoms.

Al

[Alfred Arnold]

Sheila,

I am at the very early stage of IPF (diagnosed 12/2017) but have experienced acid reflux that has interrupted my sleep. Tums has worked but more effective has been Prilosec taken in the morning.

When I first met with my Esbriet Support Team Clinical Coordinator he mentioned that he takes a Prilosec once each morning. What I have found works for me has been taking one every other morning or once every third morning. If I haven’t taken one for a few days and feel an acid buildup, I’ll take one at whatever time of day the symptom arises. The discomfort associated with the acid usually subsides within an hour.

Kind regards,

Al

[Alfred Arnold]

Paula,

My doctor is also putting me back on Esbriet with the small white tablets, stepping up the dose as you described.

My rash has completely cleared, but itching is still with me. My primary care physician put me on another course of Prednisone which ends on May 14.

One other thing my wife found that may be causing the allergic response is that I am on Prolia as part of my hormone therapy for metastatic prostate cancer. Prolia injections are given to me 2x/year. My last injection was about 3 months ago. I’ll have to look into this further and discuss it with my Urologist.

I hope restarting Esbriet does not cause you further problems.

Al

[Alfred Arnold]

Paula,

Definitely allergic reaction. Most probable cause – An excipient of the 801 mg Esbriet tablet (not the active ingredient). Will never know at 100% assurance.

I live in North Jersey about 30 minutes west of midtown NYC. You?

Al

[Alfred Arnold]

Paula/Charlene,

Back from my Pulmonolgist visit. Nothing unusual to note. Liver function tests all in normal range. Discussed going back on the 267 mg small tablets. Will start again with 3 tabs/day for 2-3 days, then increase to 6 tabs/day for a few days and finally back to 9 tabs/day. Will not go back to 801 mg tablets.

Blood pressure slightly elevated. Oxygen saturation at 98%. Lungs sound good.

Next visit scheduled in mid-July. No additional recommendations.

Absolutely beautiful day here in the Northeast…Spring has arrived! Went for long walk with shorts and a T-shirt. No problems encountered…feel well.

Al

[Alfred Arnold]

Paula,

I was not aware that Esbriet was going off patent soon, but a bit surprised that Genentech bumped up the cost to the patient since it is an orphan drug and can’t imagine a generic manufacturer going after the relatively small revenue it could capture.

The last 4 years of my career I worked for a pharmaceutical contract manufacturer. I’m quite familiar with reformulation of a brand into a generic. While the active ingredient must be identical to the brand, the various non-active ingredients (excipients) most certainly will not be identical. The burden of proof of equivalency is far less stringent – and thereby less costly – than what is required by FDA to sell the approved drug in the US.

IPF was a fluke diagnosis (at age 69) in December 2017. It followed 6 months chemo to treat recurrence of prostate CA. At the end of therapy I had a CAT/PET scan to determine if it was effective. Fortunately the CA seems to be in abeyance but 3 other medical conditions were identified: hyperthyroidism, coronary artery disease (CAD) and IPF. IPF was later confirmed via high resolution CAT scan.

I have a regular follow-up visit scheduled tomorrow with my Pulmonolgist. We will be discussing restarting Esbriet. I’ll post results of this visit.

Kind regards,

Al

[Alfred Arnold]

Paula,

I had an allergic response at about the 3rd day in with the 801 mg brown Esbriet tablet. I’ve been off the drug for about 2 weeks and have an appointment on Tuesday, May 2 with my Pulmonolgist.

Hives at first appeared slowly, spreading with each day until they covered every part of my body except my face. The bumps subsided after a few days on Prednisone but the itching continues, especially at night – making restful sleep near impossible.

I called the Esbriet nurse hotline and can agree that the response left much to be desired. A full adverse reaction report, however, was recorded and I’m sure that it will (by law) be sent to the FDA. I posted a photo on a tread posted earlier today. It shows my forearms covered with red bumps, similar to what you would see in the measles.

I don’t know if it was you who commented about a large jump in the cost of Esbriet but I would be interested to know more. I retired from Hoffmann-LaRoche in 1999 after 27 years of service at age 50. Because of this and the fact that Genentech is a Roche company, I don’t pay for the drug.

Kind regards,

Al

[Alfred Arnold]

Have not felt this good in more than a year. I’m 2 days from completing a 2-week regime of descending Prednisone for the hives condition that started about 3 weeks ago.

The only difference to the medications/supplements that I’m taking is the increased amount of vitamin D3. Together with a bone health supplement, a mult-vitamin and most recently liquid vitamin D3. Daily total is 5,500 IU. My last blood test showed 29 ng/mL.

Ideal target is 50 ng/mL. On my last Cardiologist visit (4-12-18) he added 3,000 IU vitamin D3 in a liquid form to my supplements. I can’t say this as an absolute, but I feel that the increase in daily D3 is making the difference. A level of 5,000 IU should bring my blood level up to about 50 ng/mL.

 

I came back back from a vigorous walk up and down hills for a total of about 40 minutes. I experienced no shortness of breath whatsoever and didn’t feel fatigued at the conclusion. Earlier today I did some light yard work.

Does anyone else have similar experience with Vitamin D3?

[Alfred Arnold]

Scott,

In response to your March 14th post. It appears we are both at about the same stage in IPF and very close in age. I am encouraged by the length of time many of the people on the forum are living with the diagnosis as opposed by the 2-3 year life span that is found on the internet. It’s such a shame to read about young people who have been diagnosed and what they will go through.

In my case I don’t feel sick and would not know I have the condition apart from a fluke diagnosis as well. Many of the progressive diseases move more slowly in older individuals. I had lunch today with a good friend who lives about a mile from me. He joined this forum a while back, was diagnosed with IPF about 6 years ago. He gets around as best as he can, wheeling an oxygen tank. Being that this is such a rare disease it is quite remarkable that the two of us have it. His was most likely brought on my smoking and work he did at ground zero after the 911 attack. Fortunately for him his treatment is almost entirely covered by the fund set up for 1st responders. We both live in North Jersey about 12 miles directly west of the Empire State Building.

Were do you live? Any idea what may have been a possible cause for your condition. For me it is a complete mystery. No one in my US family or in my Australian family has this.

I wish you many years of productive life. If you would like to converse via email I would certainly be open to.

Kind regards,

Al

[Alfred Arnold]

Hi Charlene,

You will find a wealth of information by a Google search on Dr. Joel Fuhrman.

I don’t know if you are an ebook fan, but for the past several years I have not purchased a hard cover book. Everything is either in iBooks or Kindle Amazon. I love this way of reading because it is so easy to search, bookmark, highlight and add personal notes. As all information on my phone and iPad is backed up to the cloud there is no worry about losing anything. Worst case if your device goes down, is lost or stolen – all information is easily restored to your device or a new device.

As were are running out of storage space it reduces clutter and makes it very easy to find a  book you want to refer to at a later time.

Kind regards,

Al

[Alfred Arnold]

Hi Charlene,

One of the Esbriet side effects is loss of appetite which would generally lead to weight loss. I was on prednisone for months during my chemo. At first I lost weight then gained. At the end I was about 190. I went down to 184 a few weeks after. Since I started following the Fuhrman recommendations on Feb 24 I’ve lost 6 lbs. I would like to get down to 170.

[Alfred Arnold]

Hi Joyce,

I will be starting week 2 of Esbriet on Sunday. So far I have not experienced any problems. Thank you for posting your experience. For this I am encouraged about a smooth transition to 3 tablets/day.

Have you had liver function tests since you began taking Esbriet? Best of luck, I hope you continue to feel well.

Al

[Alfred Arnold]

Hi Charlene,

To answer your recent questions, I like to walk in all weather conditions except when it is raining or oppressively hot. On very hot days I may wait until evening when it cools down. Since starting Esbriet I will need to be more careful to cover up and use sunscreen.

As far as the Fuhrman diet, my cardiologist recommended that I read his book – The End of Heart Disease. Fuhrman makes a very sound case for eating a healthy diet to reverse the effects of the standard American diet (SAD). It makes a lot of sense even if you follow it less than 100%.

[Alfred Arnold]

Hi Charlene,

I walk only outside. I take a fairly steep climb uphill which takes about 5 minutes past my home, downhill and then back uphill again. Total time is about 45 minutes. I am not out of breath and don’t stop during the walk. I walk in all temperatures, except if it is very hot and humid. At this point I do not struggle, probably because I was diagnosed very early in the disease.

I am also making progress on weight loss. Before starting a modified Fuhrman diet I was 184 (Feb 24). This morning I weighed 179.

[Alfred Arnold]

Scott,

I’m glad to hear that you are not experiencing side effects with Esbriet. I was unaware that a single 801 mg tablet could be taken instead of 3 capsules at every meal.

I started taking Esbriet 2 days ago, one 267 mg tablet at each meal. The initial shipment contained 207 coated tablets. Week two I am to take 2 tablets, 3x/day. Week three – 3 tablets, 3x/day. The booklet I received indicates for week four to ask my doctor if transitioning to fewer pills per day is an option.

When did you switch to a single dose 801 mg tablet?

I was diagnosed in December 2017 with IPF at age 69. How old were you when you were diagnosed and how has your health fared over the 3 years?

Right now I wouldn’t have known there was anything wrong with my lungs, except for a CT/PET scan that was done at the end of 6 months chemo for recurrent prostate cancer. As a result of the scan, I found that I have – in addition to IPF – coronary artery disease (CAD) and hyperactive thyroid disease. I don’t feel sick and have kept up with my 45 minute walks at least 5 day a week. I have modified my diet to include more vegetables, nuts, fruits and whole grains and less animal based foods.

[Alfred Arnold]

Charlene,

My friend was not actually a first responder. He was working in the ground zero area for the gas/electric company during the massive clean-up period. I had another very good childhood friend (deceased) who was on his 2nd day on the job as a National Park Ranger, assigned to Battery Park. He saw the 2nd plane hit the World Trade tower. He assisted many people away from the area. Several years ago he passed away from esophageal cancer.

I will never forget that day. My wife was having a colonoscopy. I was in the waiting area watching the events unfolding on TV. It was as if I was watching a devastation movie not actual events. From where I live I can see lower Manhattan. The buildings smoldered for 3 weeks. I also visited the area with my Australian cousins a few weeks before the museum opened.

I did the 6 minute walk and a breathing test following my diagnosis. This provides a baseline for future evaluation. I also had a cardiac stress test which lasted about 6 minutes. I did well on both without shortness of breath. When asked if I experience shortness of breath, I really did not know how to respond. I remember last Spring when I was cutting my lawn that I became quite fatigued and had to stop several times before continuing. I guess this was the first sign that something was amiss, but I attributed it to getting old. I’ll be 70 on my next birthday. This was also before my recurrent prostate cancer was diagnosed. Subsequently I assumed that my fatigue was caused by the return of cancer. If I didn’t have the scans following chemo, I would not have suspected lung disease.

I suppose that I am much more fortunate being diagnosed with IPF at this stage of life rather than those diagnosed in the prime of life.

[Alfred Arnold]

Charlene, thanks for your prompt response to my post. It is so important to ones psychological well being to know that others with a similar affliction care.

I live in North Jersey. Before my diagnosis I had never heard of IPF. Being that it is so rare, I’m astonished that my friend, who lives in the same town, is afflicted by the same condition. Although the “I” in IPF stands for idiopathic, his care is being managed by the fund set up for first responders of the September 2001 incident at the World Trade Center. In his case the condition was probably due – at least in part – to breathing in toxins while he was working in that area.

On my next visit to the Pulmonolgist I’ll ask about pulmonary hypertension.  Let me say that I am feeling well at this point. I walk for about 45 minutes at least 5 days a week, with no shortness of breath. With incorporation of a healthier diet, recommended medications, exercise and emotional support from family and friends I plan to have a good quality of life throughout my retirement.