OFEV low 02 levels

[Paul B ~ Lakeland]

Hi Ron,
Diagnosed 10 months ago. I’ve been on OFEV 6 months. No drop in O2 level yet.
Paul – Lakeland

[Richard D.Gueard]

Did you have any problems with Diarrhea?

[Richard D.Gueard]

I haven’t had drop in o2 with ofev

[Earl Robinson]

Ron, I’ve been on OFEV 150mg 2 times daily, with food and then down to 100mg 2 times daily with food for over 2 years with no problem with low O2. I suggest you look for some other reason for the drop in O2. I have very little problems with digestive track either.
Earl

[Richard D.Gueard]

I went on OFEV about 4 months ago and had no drop in O2 , I did have bad diarrhea though .

[Sandy Richardson]

I’ve been on OFEV for over a year and haven’t had any o2 levels drop.  Definitely diarrhea and vomiting side effects though.

[Ron l]

I did not experience any diarrhea. My lungs just did not feel the same with OFEV. I am now back on Esbriet.

[Marilyn Cellucci]

Dear Ron,

Why did you switch from Esbriet to Ofev?

Marilyn

 

[Bill S]

I have been on Ofev for two years with no drop in O2 levels or rise in blood pressure.  I manage the diarrhea with Imodium.  Recently, my PCP Rx’ed Diphenoxylate-Atropine ( also known as Lomotil) to further control the diarrhea.  It supposedly slows down the digestive process, enzymes, etc.  I just started using it with no difference than Imodium, but it supposed to be effective in 10 days.  Has anyone heard of this med or is using it?

Bill S

[michael lewis mcdowell]

I have had the same thing happen to me. My O2 levels drop any time I do any kind of activity (low 80’s to low 70’s). Any time I do any kind of work or go outside and walk around my O2 level drops very low.
When you went back on Esbiret did your levels go back up? Also have very sore muscles, hands, feet, back, legs etc….
Mike

[Kris manian]

Hi Michael,

when you go for walks do you carry an oxygen concentrator or tank. If oxygen level drops that low it can impact other organs. So please take care.
Kris

[Paul B ~ Lakeland]

I would be cautious to assume the OFEV is the primary cause of lower 02. Definitely check with Pulmonologist.

[Rod Danner]

I agree with Paul Lakeland. The drop in O2 levels is most likely from the progression of the disease.

[Dennis Skahen]

I have been on 100mg of OFEV twice a day since Oct. 2021 with no drop in 02 levels but a large increase in phlegm. On/off diarrhea.

[Ron l]

I stopped using Esbriet after 2 straight PFT tests showed a decline in my numbers. My doctor suggested I try OFEV. I am now back on Esbriet at the full dose of 9 pills a day. I will see if my 02 levels come back up.

Ron

 

[Earl Robinson]

Mike, I have been on OFEV for over 2 years and seem to have much the same reaction to activity as you do. I’m on 13L of O2 during the day and my levels will still drop to in the low 70’s just going to the bathroom which is only 20’each way from my chair. At night I lower the level of O2 to 6 or 7L. In addition to the IPF I also have PAH and I’m talking Tyvaso for that. I go to pulmonary therapy 2X a week where they up the O2 to 15L when on the machines. I use a wheelchair to get to and from the car. Sure puts a crimp on being active. Never thought I would see this. Earl