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  • OFEV low 02 levels

    Posted by ron-l on February 17, 2022 at 3:38 pm

    I recently started OFEV after being on Esbriet for 9 years. I was aware of the side effect of higher blood pressure. I was not aware it would lower my 02 levels. I got down to 83 onetime. I have since stopped OFEV and I am returning back to Esbriet. Has anyone else experienced low 02 levels with OFEV?

    Ron L

    earl-robinson replied 1 year, 11 months ago 11 Members · 16 Replies
  • 16 Replies
  • paul-b-lakeland

    Member
    February 23, 2022 at 8:55 am

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

    • richard-d-gueard

      Member
      February 24, 2022 at 2:15 pm

      Did you have any problems with Diarrhea?

      • richard-d-gueard

        Member
        March 3, 2022 at 2:40 pm

        I haven’t had drop in o2 with ofev

    • earl-robinson

      Member
      March 4, 2022 at 1:02 pm

      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

    Member
    February 24, 2022 at 2:14 pm

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

  • sandy-richardson

    Member
    February 24, 2022 at 2:59 pm

    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

    Member
    February 25, 2022 at 12:22 pm

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

  • marilyn-cellucci

    Member
    February 25, 2022 at 12:42 pm

    Dear Ron,

    Why did you switch from Esbriet to Ofev?

    Marilyn

     

  • bill-s

    Member
    February 25, 2022 at 12:50 pm

    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

    Member
    March 2, 2022 at 10:44 am

    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

      Member
      March 20, 2022 at 12:02 pm

      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

    Member
    March 2, 2022 at 11:21 am

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

    • rod-danner

      Member
      March 3, 2022 at 6:59 pm

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

  • Dennis Skahen

    Member
    March 4, 2022 at 2:46 pm

    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

    Member
    March 4, 2022 at 4:04 pm

    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

    Member
    March 20, 2022 at 12:51 pm

    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

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