New user to Pirfenidone

[Sandyman]

Information says Pirenidone should be taken with food. Says grapefruit should be avoided. Alcohol and smoking should be avoided. Dosage was recommended starter dosage.

If me, I would try it again WITH food. If I got sick I would not take the second pill and would consult with my doctor immediately with my sick symptoms. My options only. I am not a Doctor. Sandyman

[Terry]

Hi Riley,

I started Pirfenidone 3 months ago and to my surprise I am tolerating it very well. It is very important to take it with some food and I find that a banana or a piece of toast taken just before or during works for me. I got this info from what is referred to as the “BRAT”diet which can be either Banana, Rice, Apple sauce or Toast. I hope this might work for your Husband.

[Bcoddy]

I cannot tolerate the generic form of the drug and have been able to get a pass on the brand-name Esbriet. I’ve been on it for almost 2 years now with few side effects after the first six months. Always eat with meals.

[Polly Kanto]

Hi Riley. My sister has IPF and tried Esbriet after being diagnosed at the Mayo Clinic four years ago. She said the medication “nearly killed her.” After seeing her pulmonologist again she went on Ofev and after going down from 150 mg to 100 mg is doing very well. A little over two years ago I was diagnosed with ILD, and went on Ofev. The 150 mg dose was a little too strong for me too but the 100 is working out very well. It seems to be different with different people, maybe because of body chemistry. Some can tolerate Esbriet and not Ofev, and vice versa. Check with your pulmonologist and see if he would like to try you on Ofev. Good luck to you!

[David Bennett]

The the two drugs have very similar side effects that vary from person to person, so a drug change might work. I am on Ofev and had terrible gi issues for the first year on 150 twice a day. I usually have toast or an English muffin and a 20 or 30 gram protein shake using a plant based protein powder and water 15-30 minutes before Ofev. A little fat, some carbs, and a generous protein load really helped. I am on Ofev 100 twice a day now with the same diet system and rarely have nausea i should try to get 80-100 grams of protein a day. It will probably help with Esbriet too.

[bradley]

Hi Riley, I need a full belly to take Perfenidone or I get very dizzy and a bit nauseous. I’ve been taking the full 801mg times 3 daily for 2 months. Have something substantial to eat before dosage.

[MKE]

My husband was in perfidone for 5 months. This is what we experienced. Wear sunscreen all over his body everyday. Where a hat & full body coverage at all times. His skin could be exphoto sensitive. My husbands stomach was a wreck but it ebbed & flowed. The worst part was when he went to the driving range with sunscreen on, but forgot his hat. The next day he broke out with a rash from his head & neck, his back & all 4 extremities. Very unsightly and itchy. Three Drs said it was definitely a drug reaction from Perfidone.

Please take care & remind your husband to go outside as if he were allergic to the sun.

My husband is waiting fottge rash to clear up and then start a different medication.

Good luck in your journey. Everyone’s is unique.

[tropicalgirl]

My husband has IPF. Fortunately his meds OFEV

[wimp]

I have just started Pirfenidone on one pill but go up to two Monday. My eyes seem to be affect. Run water and blurry at time. Does anyone else have eye problem.