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Blood transfusion (Update - Please read my update at the end)

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Crohn's Disease
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Posted 5/29/2008 5:06 PM (GMT 0)
Hi. My hemoglobin was at 94 and dropping, so I got 2 units of blood yesterday. Does anyone know how long it takes to feel the effects? The nurse told me yesterday that it could take a few days but I was wondering what other people's experience is. I'm still really tired.

I don't think it's the 6MP since I've been on it for 6 weeks now and the fatigue wasn't too bad until just a couple weeks ago when my stomach started feeling worse and I had some dark, tarry stools.

Thanks!
RF
Posted 5/29/2008 7:32 PM (GMT 0)
i got a transfusion of 2 units in july and september of 2007. i was told i would feel it immediately or in a day. took me 2-3 days to feel any improvement. it slowly got better with time.

my advice, from my experience, is to keep monitoring your blood weekly if you can. my hem, hematochrit, wbc, and rbc all tanked in less than 2 months after the first transfusion which prompted the second transfusion. make sure you have a doctor who wants to do something instead of just monitor your blood. i then got off the 6-mp suspecting it was causing bone marrow suppression (i was on it for like 13 years, so that could be a long term side effect) and i took like 6 otc iron pills per day, but with my doctors supervision. that got me better.
Posted 5/29/2008 8:02 PM (GMT 0)
Thanks so much for the reply Harry. I am having my levels rechecked in 2 weeks when I go for a barium x-ray. Unfortunately my stomach can't handle iron pills at all.

I've been wondering about the 6MP, but my rbc's had dropped abit even before the 6MP was started and I know I've had some bleeding recently (dark tarry stools) so I don't think it's the drug, but I'm wondering now. I'm on 75mg right now and I was on 50 to 125 mg for 5 years before stopping it last fall to see how I did without it and went into my current flare (I felt great on the 6MP during those years).

I don't think my reaction to the 6MP could have changed in the 6 months I was off it?

Again thanks very much for the reply.
Posted 5/31/2008 11:21 PM (GMT 0)
Thought I'd post some good news. I felt the effects of the transfusion yesterday, and I'm better today. I don't feel out of breath anymore, I don't get dizzy when I stand up and I'm able to concentrate so much better. The only leftover symptom I feel right now is kind of weak in the legs, I think my legs have always been a weak spot of mine.

I'm happy to have some more energy and my stools haven't been black since last weekend so hopefully I'm holding on to my blood. I'm going to assume the legs will come back soon and that it's just an effect of the anemia and not that I'm getting MS at the same time as a crohn's flare...

Thanks for reading.
RF
Posted 6/1/2008 6:26 AM (GMT 0)
Isn't it amazing when blood actually goes in and not out!!
I have been there and just hang onto that feeling, don't overdo it though.
Posted 6/1/2008 9:29 PM (GMT 0)
Hi,

I'm glad you are feeling better after your blood transfusion.  I to have to watch my hemoglobin and iron levels.  When my hemo gets down to 100 I have an iron infusion not pills.  It takes approx. 2 weeks for the red blood cells to form after the iron, so if my hemo is under 100 I to have a blood transfusion.

Hope this helps, take care.

Julia

 

Posted 6/2/2008 12:57 AM (GMT 0)
Yes Sharann, I'm keeping my fingers crossed.

Thanks Julia, those guidelines are helpful to know. When my hemo was 115 they were going to get me an infusion (can't take iron pills) but when it went under 100, like you said, they went for the transfusion. Hopefully I get my leg strength back soon. How do you feel when your hemo is 100, pretty tired? I felt like it was the end for me. It might have felt worse for me b/c my levels dropped from 115 to 94 in a couple weeks so maybe the sharp decrease made for more symptoms.

thanks!
Mike
Posted 6/2/2008 2:13 AM (GMT 0)
Hi Rider Fan (as in Saskatchewan Roughriders?),

My hemoglobin dropped from 105 to 87 in 2 weeks. I felt tired, short of breath, and could hardly lift my head up off the pillow. It was then that I added a hemotologist to my list of specialists. He gave me the blood transfusion immediately, then two weeks later I had my first iron infusion. I had my blood counts done on a weekly basis for 9 months after that and had an iron infusion as needed which turned out to be every 6 weeks or so. I know I don't absorb iron anymore due to 3 bowel resections including the ileum. I noticed you haven't had any surgeries and I wonder how much blood you are losing in your stools to cause such anemia. I'm assuming that your GI has ordered the barium x-ray and is aware of your blood work. If you are in Sask. I hope your GI is Dr. Jim McHattie - outstanding physician.

Julia
Posted 6/2/2008 2:28 AM (GMT 0)
Hi Julia. Yes as in the Riders, but I'm in Winnipeg!

Yes my GI is ordering the barium x-ray, and I think I may still be getting the iron, not sure. I guess we'll see where my blood is at in a week and a half when I get the xray. Ya the blood loss is troubling, but I'm hoping that the prednisone has stabilized things...The GI nurse told me to let them know if I feel really bad again or notice any blood loss between now and then.

Thanks so much for your input, it's really helpful.
RF
Posted 6/2/2008 4:18 AM (GMT 0)
How was it getting the iron transfusion? I'm going in at some point (it's been ordered but i'm awaiting the appointment) to get an iron transfusion... What is it exactly? The dr. didn't explain it too well.
Posted 6/2/2008 2:13 PM (GMT 0)
Hi,

An iron infusion is just like any other iv.  It didn't burn, but it is slow going.  Take a lunch and plan on spending most of the day at the hospital (minimum 6 hours).  For pre-meds I am always given tylenol, benadryl, and a dose of prednisone.

Good luck, and I hope you feel full of energy within 2 weeks.

Julia

 

Posted 8/19/2008 1:39 AM (GMT 0)
I have an update and a question if you all don't mind. I also got a iron infusion in early July, which brought my ferratin up to 113 from 3. Unfortunately I just found out that while my hemoglobin has gone from 10.4 to 11.6, my ferratin is already back to 12.

My stomach is feeling very good, I have 1 normal bowel movement a day with no visible signs of bleeding (no red and no dark stools). I had a sbft a month ago and it was almost completely normal. How can my ferratin be all the way back to 13 already? I've left a message with my doctor but sometimes it takes a while for them to get back to me, especially on 'non-urgent' things such as this.

Does anyone have some thought on what can be going on?

thank you all
RF
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