Lorraine Tracey
Forum Replies Created
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When I was Esbriet (I am now on Ofev), I received in the mail a pill container. It is circular and has 7-Monday through Sunday pill holders that have 3 places for pills. I fill it up every Monday and include my other pills I take and keep it right on my placemat where I sit. It’s so user friendly and if I go out to eat I can slip one of the 3 pill holders in my purse or pocket. I also have calendar alarms set on my phone set for around the time I take my Ofev, so my phone reminds me twice for all my doses, that was 3 when on Esbriet, but now twice on Ofev. I also got healthy recipe cards in the mail from Genentech. Those were nice perks! But my 2 bedtime pills are a different story. Ridiculous that I can walk in the bathroom to get ready for bed, and in that short amount of time can forget whether I’ve taken them!!! So now, when I go in the bathroom I take my pills and leave the 2 containers on the counter till I’m finished and leave the bathroom, then I put them back where I keep them.
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Thank you Denise for a great question and all the answers! I am now going to inquire about the 3 shot. My pcp, and medical grp I belong to, don’t seem to think I’m eligible. Time to be a squeaky wheel.
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Hello All,
What a wonderful thread this was. I noticed it was from months ago, but it just turned up in my email, and I’m new to the group. Glad to see that Ofev can be used long term. I started on Esbriet, but I was so very sick from it-nausea, diarrhea, dizziness, and sun poisoning, even being very cautious. My Dr. switched me to Ofev 150, but although not as bad, the side effects were troublesome. I am now on Ofev 100, and if I maintain the 12 hr intervals and eat properly it’s manageable. It has caused an increase in blood pressure so I’m on medication, and I have now pulmonary hypertension. I take advantage of the Ofev Open Door program for support and I do ask questions of the nurses and pharmacist from the specialty pharmacy that I get my medication from. I also take “medication vacations” Dr. approved, not often, but sometime I just need a break. Ofev is working for me, my PFT’s are remaining stable. I notice subtle changes in the way I feel and I’m so much more fatigued, and have good and bad days, but as another member posted, I feel thankful, things could be so much worse.
Lorraine
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Hi All,
I developed Pulmonary Hypertension as a result of my IPF. My PCP couldn’t lower my blood pressure, which was new to me, and although HBP is a side effect of the Ofev, she told me to see my pulmonologist, who ordered an echo and a cardiac stress test, the PH showed up in the test. I also have thickening in my left ventricle. They upped my dose of blood pressure medication. I’m thankful I have a primary who works in conjunction with my pulmonologist! The thing that surprised me was lung cancer, but all those complications were PF, not just IPF, so that makes sense.
Lorraine
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Christie, I love all you ideas and how cool that you linked up the items you were talking about! Spot on!
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I just received my booster this pass Saturday, the day after it was approved. I read that an interstitial lung disease and pulmonary hypertension are qualifying diseases, of which I have both. I’m 64 and had no issues at all, I told them what I have and they gave me the vaccine. It was just a walk in clinic, not my Drs office. I’m so glad!