I was originally diagnosed in 2015 but it was early and I wasn’t symptomatic. In December I had my yearly HRCT and there was some progression as well as PFT’s in May of 17 and November of 17 when my function dropped from 68% to 33%.  I had a 6 min walk test in Febuary that resulted in me needing up to 6L of oxygen with exercise only. Otherwise… Read more

I take both Pirfenidone and 20 mg Prednisone daily. I started at 40mg per day for 14 days then titrated down by 5 mg per week until I got to 20mg per day. My dr says this is long term for me. I feel really lucky that I don’t have the increased hunger or mood swings (I don’t think). I am tolerating the med well overall.

Just finished with 2 days of test and it turns out I have GERD and silent reflux. I will be having surgery to correct it. I am not sure when. What I do know is my wonderful dr suspected I had silent reflux/GERD because he finds it very common with ILD. It is definitely something worth looking into. Apparently you gan have it without being symptomatic.

Charlene! First a BIG OLE HUG for you!

I haven’t really had an anniversary date yet. Although in was spring 2015 when I was told I had ILD, it wasn’t until December 2017 that I was really informed how serious my disease is and that there is a relatively short life expectancy.

My advice is this, post the stuff on your facebook cliche or no, if… Read more

Charlene,

They aren’t sure what caused the decline but they do suspect it may have to do with my sinuses. I explained in a previous post somewhere about how last summer I started smelling a random “yeast bread” smell and had to have sinus surgery in December. When they did my surgery I has Fungal balls in my sinuses, the fungal balls… Read more

Although I was diagnosed in 2015 with Interstitial Lung Disease it is just recently that I have been diagnosed with a type.  So up until December I was basically just living my life getting HR CT scans yearly and PFT every 6 months and was stable.  May 2017 to November 2017 I had a 30% decline in my lung function.. Up until this point I didn’t… Read more

C- It is actual pine shavings so the smell is just that of a pine tree. I don’t find it to be too strong. It does absorb the cat urine and is clumping but I find it doesn’t mask odor as well as the commercial clay scented litters do. However I scoop out the box once or twice per day so it doesn’t seem to be an issue.

 

Charlene,

My switch to the pine litter had nothing to do with my ILD. I actually switched because my old man dog Buddy cannot stay out of the cat box and I was worried about how the clay clumping litter would affect his respiratory system and his stomach. I was concerned it might cause a blockage or something. So I switched to the natural… Read more

I have wondered the same thing but I use an all natural Pine litter so there is no dust. maybe something to consider.

 

Charlene,

I ordered my salt inhaler off of Amazon. There are several different types. I just chose a moderately priced one and chose ceramic over plastic. I will begin using it today.   I have heard great things about the salt lamps as well but have never used one.  It is officially spring here in Oregon too but it is still cold and rainy.… Read more

I live about an hour away from the Pacific Ocean/Oregon coast. Guess I have an excuse to take more trips to the beach! I just wish it were warmer.  Charlene, I ordered a Salt inhaler and should have it this next week. I am very interested in any homeopathic treatments that I can do in conjunction with the western medicine.  A holistic, proactive… Read more

https://www.globalhealingcenter.com/natural-health/himalayan-salt-inhaler-benefits/

 

I use one inhaler Ventolin, It is occasional and just helps with the reactive airway stuff. Currently my allergies are wreaking havoc on me. I have upper respiratory crud and wheezing and coughing. I feel well, no fever, not super run down just sound horrible.   I have never heard of this salt inhaler and I am really interested in it. I will be… Read more

Janis and Charlene,

C- thank you so much for posting the link to that article! I am really strong in my conviction to not be reduced to my disease. This is just another page in my story and does not make up my whole book. I will do everything to help others know that they are more than their lungs/diagnosis.

J- I love dogs! I have 2, a 14… Read more

Janis,

Hello again. Sorry I have been MIA all weekend the weather was too beautiful here in Oregon. I am so sorry you have a cold but I hope you are on the mend now. No Dr. Raghu @ UWMC did not want to do a lung biopsy now because he felt it wasn’t worth the risk. He said based off my history and signs and symptoms he was confident I do not… Read more

Hi Janis,

So nice to meet you. I had my appointment up at UWMC last Friday and it was pretty amazing. Dr. says I do not have IPF, but rather NSIP auto immune related. I am still tasking Esbriet with no side effects (thank goodness) and am now taking Mycophenelate and Prednisone. Thank you for joining this forum and please keep us informed on… Read more

I don’t know that I experienced any particular side effect. However, when we live with something it just becomes normal for us. I love the out doors and sunshine as well. I take Vitamin D3 5000 IU once per day. I don’t know if it effects how I feel per se but I do continue to take it because I am consistently deficient. I also take a… Read more

I have always been low Vitamin D but I live in an area that is grey and gloomy about 9 months out of the year. Vitamin D deficiency in very common here. I take Vitamin D supplements daily. I am big on vitamins and supplements and take several daily.

Charlene,

The way I have been prescribed Esbriet is as follows:

Days 1-7 take 1 pill 3x a day with meals

Days 8-15 take 2 pills 3x day with meals

days 16 forward take 3 pills 3x day with meals

If you miss or are off for 14 days you have to start over.

I do not know anything about Ofev….

 

Hi Charlene,

I am so happy that I have stumbled across the PF forums so early. The reason I take a full glass of water is because once upon a time I was taking a different medication (unrelated to PF) that also had stomach upset as one of it’s major side effects. Drinking a glass of water with it really helped to avoid the stomach issue so… Read more

Hi Shaw,

I am new to Esbriet as well. I just began taking it on Feb 4th. I am mid week 2, and taking 2 pills, 3 times per day. I am typically the type of person that if “stomach upset” is a side effect I will most certainly suffer from it. I have been so fortunate I have had zero problems.  I always take my medication with a meal and I eat… Read more