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    • #31083
      Ron l
      Participant

      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

    • #31148
      Paul B ~ Lakeland
      Participant

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

      • #31165
        Richard D.Gueard
        Participant

        Did you have any problems with Diarrhea?

      • #31237
        Earl Robinson
        Participant

        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

    • #31164
      Richard D.Gueard
      Participant

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

    • #31167
      Sandy Richardson
      Participant

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

    • #31185
      Ron l
      Participant

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

    • #31187
      Marilyn Cellucci
      Participant

      Dear Ron,

      Why did you switch from Esbriet to Ofev?

      Marilyn

       

    • #31188
      Bill S
      Participant

      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

    • #31225

      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

      • #31429
        Kris manian
        Participant

        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

    • #31226
      Paul B ~ Lakeland
      Participant

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

      • #31233
        Rod Danner
        Participant

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

    • #31241
      Dennis Skahen
      Participant

      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.

    • #31242
      Ron l
      Participant

      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

       

    • #31430
      Earl Robinson
      Participant

      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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