[Raymond C. King]

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

 

[Raymond C. King]

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

 

[Raymond C. King]

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

[Raymond C. King]

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.