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Hi all, my first dose of Winrevair was just delivered. The CVS Nurse comes to my home on Wednesday to show me how to administer the injection. That’s the only thing with starting Winrevair that I am a bit nervous about. Hopefully, once I get over that initial hurdle, all will be fine… right? 🙄 Anything else I should know as I get started?
Hi Steve, Winrevair is a miracle drug and I think you will do good. I was VERY nervous about learning how to do it. Youhave to learn how to mix it and that. My husband learned to and he was the one that did everything for me! The nurse told me if neither my husband nor I could not do it I could not be on it. But I am sure you will not have a problem. I really hope it helps you as much as it helped me. But I am no longer on it because. Of a stomach bleed from having Scleroderma.because of that i have these veins in my stomach and Winrevair caused them to bleed. Goid luck and God bless!
@A myPHteam Member. Hi Debra what caused my low iron, ferriton, hematocrit and low hematocrit was because of a stomach bleed. I also have scleroderma and that caused me to have these veins in my stomach and they can blled very easily and winrevair made them bleed. So that caused the anemic. I had 3 iron infusions last summer. But I had to have 3 more . My GI Dr said sometimes it takes a few more infusions to bring numbers back up and now they are good. She also told me to take 325 mgs of a iron supplement. I am really glad your numbers were improved on your RHC. Now I hope your iron numbers improve. It might take a few more infusions. Take care and God bless!
Hi Cindy. We were going to try Winrevair but my numbers were so improved on last RHC I don't need to. As it turns out I wouldn't have been able to because of perplexing low iron. I've had 2 infusions but ferritin barely moved and now there's 2 more infusions scheduled. Do you know what the cause of your anemia is? I just had negative scopes so now might have to get more invasive studies to check for artery involvement like an AVM.
It's so frustrating as I've lost a tremendous amount of hair over the last 6 months, and no energy.
Ironic isn't it? My PH is now doing good but something else pops up.
What should you know about starting Winrevair injections?
It's completely normal to feel nervous about your first injection! Having the CVS nurse walk you through the process will help you feel more confident. Many people find that once they get past that first time, it becomes much easier.
Common side effects to be aware Show Full Answer
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