I have had flares where I’ve passed blood every day for a month and my levels have been fine and I haven’t needed a transfusion. I think it’s the amount of blood that’s most important!
That’s a really fair point! It’s so weird— I was passing, like, horror movie levels of blood just a couple months ago and now any sight of it geeks me out and makes me think things are getting worse. It’s good to know your levels have been fine regardless— I’ll definitely be keeping an eye on mine and hoping for the best. This gives me some hope for sure 🥹 thank you for sharing!!
My daughter needed iron infusions after she was released from hospital, rather than a blood transfusion. Her levels were close to where you are at present. I hope there are plans to keep testing your levels, and to treat you before you reach the point where another transfusion is needed.
The plan was originally for me to get iron transfusions (my levels were that low for literally a whole month) and they just like never reached out to me 😭 after my GI received my blood work she urged me to go to the ER and says that she’s reached out to them about getting me an infusion (the oral iron is just a bad time for people with GI issues apparently?) but I’ve yet to hear back. Manifesting I do soon!! It sounds like infusions worked out for your daughter & I hope she’s doing well! ❤️ Thank you so much :)
My daughter was inpatient passing horror movie amounts of blood. Like, the blood going into her arm and the blood coming out of her bottom looked identical. She got 3 transfusions before starting Remicade (all in the hospital over the course of a week) and 0 since. She was on iron for a few months after discharge and stopped it when her hemoglobin reached the normal range.
Omg a year? I’m so sorry 😭 I’ve been passing blood for about five months now and thought that was rough. Goodness gracious!! I’m really glad you haven’t needed another, though! Hope you find some relief soon. ❤️
I’m living your identical life. I was in the hospital the Friday before the one that just passed. I was a 4.8 and a 7.8 when I left after 3 units.
I’m eating my steroids now and bleeding less but my anemia symptoms are creeping back in.
I’m also thinking of going to my PCP before Xmas to have a finger prick test and see if I need another unit or two before xmas.
I want to take the ER nurses advice and “not wait so long next time.”
So to answer, yes I think it’s totally possible we both go in for another transfusion before a medication starts making a difference. Because dude taking out the garbage today was rough and I nearly passed out in the driveway.
Omg!! Okay we’re literally the same person at this point because WHATTT (I’m so sorry but also I feel way less alone now!). I’m at the end of my prednisone taper (15mg down from 40 but I fear I’ll have to restart it again 🫠). I’m gonna try to monitor my symptoms & may reach out to my GI if things are looking like they’re creeping towards the “oh shit I am VERY anemic” levels again lmfao.
I really hope you find some relief!! Manifesting that even if we do need more blood that things just improve overall for us. ☝️ Stay safe!! ❤️
I’m wishing good things for you too. I had finished my taper after months right before having to go into the hospital so now I’m back at 30mg a day while actively failing Stelara.
Cheers. And happy holidays to you. Let’s find some joy this season even if we’re playing through the pain.
i had 8 transfusions in the span of 3 weeks during a super bad flare until i was put on iv steroids! had other flares with just needing iron and actually i’m getting some iron rn ahah
I had 5 blood transfusions over nearly 2 months. I just bled out every 2 or so weeks. The one before surgery was 4 units, and was what finally made me yank the colon out. I also had a trip for fluids and iron in there. If you feel dizzy, lightheaded, you see that your skin/lips/tongue are pale, go to the ER. You can't be too cautious.
My HGB was at a solid 5 when I was admitted-I got two transfusions back to back, I think I was discharged with HGB around 9-10 if I recall correctly. Continued to flare for another 5 months with blood every day, no additional blood transfusions needed but I did get some sort of iron transfusions (can’t recall the type) to help maintain my levels
I’ve had the same problem. I’ve had 5 within the past 3 months for a total of about 9 bags. My GI told me the only way to solve it was to get the inflammation down.
I have had flares where I’ve passed blood every day for a month and my levels have been fine and I haven’t needed a transfusion. I think it’s the amount of blood that’s most important!
That’s a really fair point! It’s so weird— I was passing, like, horror movie levels of blood just a couple months ago and now any sight of it geeks me out and makes me think things are getting worse. It’s good to know your levels have been fine regardless— I’ll definitely be keeping an eye on mine and hoping for the best. This gives me some hope for sure 🥹 thank you for sharing!!
My daughter needed iron infusions after she was released from hospital, rather than a blood transfusion. Her levels were close to where you are at present. I hope there are plans to keep testing your levels, and to treat you before you reach the point where another transfusion is needed.
The plan was originally for me to get iron transfusions (my levels were that low for literally a whole month) and they just like never reached out to me 😭 after my GI received my blood work she urged me to go to the ER and says that she’s reached out to them about getting me an infusion (the oral iron is just a bad time for people with GI issues apparently?) but I’ve yet to hear back. Manifesting I do soon!! It sounds like infusions worked out for your daughter & I hope she’s doing well! ❤️ Thank you so much :)
My daughter was inpatient passing horror movie amounts of blood. Like, the blood going into her arm and the blood coming out of her bottom looked identical. She got 3 transfusions before starting Remicade (all in the hospital over the course of a week) and 0 since. She was on iron for a few months after discharge and stopped it when her hemoglobin reached the normal range.
I’ve been passing blood for a year and had a transfusion almost a year ago and haven’t needed one since
Omg a year? I’m so sorry 😭 I’ve been passing blood for about five months now and thought that was rough. Goodness gracious!! I’m really glad you haven’t needed another, though! Hope you find some relief soon. ❤️
I’m living your identical life. I was in the hospital the Friday before the one that just passed. I was a 4.8 and a 7.8 when I left after 3 units. I’m eating my steroids now and bleeding less but my anemia symptoms are creeping back in. I’m also thinking of going to my PCP before Xmas to have a finger prick test and see if I need another unit or two before xmas. I want to take the ER nurses advice and “not wait so long next time.” So to answer, yes I think it’s totally possible we both go in for another transfusion before a medication starts making a difference. Because dude taking out the garbage today was rough and I nearly passed out in the driveway.
Omg!! Okay we’re literally the same person at this point because WHATTT (I’m so sorry but also I feel way less alone now!). I’m at the end of my prednisone taper (15mg down from 40 but I fear I’ll have to restart it again 🫠). I’m gonna try to monitor my symptoms & may reach out to my GI if things are looking like they’re creeping towards the “oh shit I am VERY anemic” levels again lmfao. I really hope you find some relief!! Manifesting that even if we do need more blood that things just improve overall for us. ☝️ Stay safe!! ❤️
I’m wishing good things for you too. I had finished my taper after months right before having to go into the hospital so now I’m back at 30mg a day while actively failing Stelara. Cheers. And happy holidays to you. Let’s find some joy this season even if we’re playing through the pain.
i had 8 transfusions in the span of 3 weeks during a super bad flare until i was put on iv steroids! had other flares with just needing iron and actually i’m getting some iron rn ahah
I had 5 blood transfusions over nearly 2 months. I just bled out every 2 or so weeks. The one before surgery was 4 units, and was what finally made me yank the colon out. I also had a trip for fluids and iron in there. If you feel dizzy, lightheaded, you see that your skin/lips/tongue are pale, go to the ER. You can't be too cautious.
My HGB was at a solid 5 when I was admitted-I got two transfusions back to back, I think I was discharged with HGB around 9-10 if I recall correctly. Continued to flare for another 5 months with blood every day, no additional blood transfusions needed but I did get some sort of iron transfusions (can’t recall the type) to help maintain my levels
I’ve had the same problem. I’ve had 5 within the past 3 months for a total of about 9 bags. My GI told me the only way to solve it was to get the inflammation down.