Michael Lamkin

Hi Charlene

im a little confused with regard to posting on the forums. I’ve noticed a few posts I’ve made seem to disappear into cyberspace and never to be found again. I’ve only tagged one person on my posts and there have been posters where I’ve tagged no one it some still show up. Does it make a difference if I post on an email update or if I…[Read more]

Hey Ray

just wanted to let you know I received the 771mg pills and they are in solid form. However it’s possible they also come in capsule (can opened and in powder form) but I don’t know.

Mt best and hope you’re doing well!

Michael

Hi Charlene

I personally have not an acute exasperation but I can imagine it must be very frightening. My private primary physician (before I started using the VA)  mentioned 6 years ago the  scaring on my lungs and kept asking if I’d ever had Valley Fever to which I always responded no. Actually 18 months ago I was diagnosed with VF 6 months a…[Read more]

Hi Ray, I use the VA and it’s never too late to get started. For the most part their care is excellent and the highest co-pay they charge for medications is $34 a month but for the most part is $8-$11 a month per prescription. There are zero co-pays on ALL other treatments such as CT’s and X-rays. Also no charges for oxygen (even the…[Read more]

Hi Charlene

I’m not aware of any non-profits that afford aid for patients with this disease however I’ve never really investigated that avenue since I use the VA. Yes, the insurance co-pay is the patients monthly share of the cost of the drug. I’d really like to hear from those who are subjected to this expense and if they are able to get some…[Read more]

Hi Michael

Yes, I find the cost of these drugs amazing. While I understand that while developing a new medication or treatment is very expensive and most likely would not happen unless justified financially by the drug companies. A person is really at the mercy of the insurance industry or, as in your case, the drug company.

Sometimes I think…[Read more]

Hi Charlene

Just out of curiosity I checked the cost of Esbriet on the internet and found that without insurance or any financial aid the annual cost was $94,000 per year. Using Medicare in addition to HMO insurance coverage the monthly co-pay was approximately $2,300. The Ofev was even more with an annual cost without insurance or financial aid…[Read more]

Hi Charlene and Ray

The Esbriet I take is a capsule in powder form and can be opened if necessary (unless the doctor says otherwise) which I’ve been taking as 3 257 mg pills 3 times a day. I’ll be starting the 771 mg pills (1 pill 3 times a day) as soon as I receive them. I don’t know what form the higher dose comes in but if no one else responds…[Read more]

Hi Charlene

I received a call from my pharmacist yesterday to check on how I was tolerating the Esbriet. I mentioned the dryer cough and increase in my shortness of breath. She said that since Esbriet only works on the cellular level it would not effect my breathing or cough. Since we’re in the middle of our “monsoon” season here in Arizona (much…[Read more]

I just started week 3 of taking Esbriet and in addition to some of the symptoms I’ve noticed besides those I’ve already seen mentioned is some increased shortness of breath and my cough seems to have much less production than before. Just wondering if anyone else have had similar experiences or are they possibly just the progression of the IPF? I…[Read more]

Hi all and thanks for the info. regarding herbs etc.  I, like most of you I’m sure, really appreciate any additional information I can get regarding IPF. I’ve been on Esbriet for only 5 days taking one pill three times daily. Next week I’ll start on two pills three times a day and then three pills three times a day. I guess I won’t really know…[Read more]

I live in Surprise AZ and receive my care through the VA. I currently am not involved with a local support group. I was just recently diagnosed and hadn’t given a local support group much thought but will look into the matter.

I currently use the VA clinic in Phoenix and have done so for the past 2.5 years. After finally getting over bout with…[Read more]

Steve,

Yes, I’d like to have any information your doctor may provide related to supplements.  Thanks!

Michael

No but I just started taking esbriet yesterday and immediately noticed the side affects of stomach ache and sick to my stomach. Took a couple of tums and that gave relief.

Hi Charlene

Thanks for responding to my post!  Olodaterol is the inhaler i got to replace the Symbicort which is a spray and very similar to Symbicort. You have to exhale and then spray and deeply inhale. Occasionally I have a problem inhaling the spray just as I did the Symbicort. Seems when it reaches the lungs I have a tendency to choke.…[Read more]

I have been using both Spiriva  and another inhaler similar to Symbicort since being diagnosed with COPD 2.5 years ago. I’ve never used any type of emergency inhaler because I’ve never really needed it. I assume both inhalers work but all I know is my breathing has deteriorated since I bagan usage. When I was diagnosed with IPF a few months ago…[Read more]

Hi Joyce and all other commenters on this subject.

Thanks for the information regarding Esbriet. I just received the medication and will start taking by the end of the week. My doctor gave me the impression the side effects were pretty bad by ticking them all off and giving me the impression I would have them all.

Thanks again for helping to put…[Read more]

I lie on my back sometimes but prefer lying on my side.