Hi I am going for my first iron infusion monday week as my hg is 9.6 and my gastroentrologist thinks i am not absorbing enough iron from tablets. just wondering how long does it take to work, i am suffering with fatigue and generally feeling ran down. crohn's is currently under control since january i started 6mp but he thinks my tiredness is more down to anemia then the 6mp
Iron Infusion
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Cat-a-Tonic
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I had 3 iron infusions back in 2015, and as I recall, I started feeling noticeably better right away. I was dealing with tons of fatigue as well, and the fatigue lessened quite a bit right after my first infusion. Hopefully you will feel better right away also. Do make sure to bring a book or something to keep you occupied, as the infusions tend to take awhile - I think it was about 2 hours or 2.5 hours for each of my infusions, so I brought my chromebook and watched movies.
Good luck! I hope you feel a lot better once you've had the infusions.
Good luck! I hope you feel a lot better once you've had the infusions.
An Hb of 9.6 will definitely make you feel fatigued.
If after your infusions you wish to try tablets again to maintain or boost your iron status, there are things you can do to increase your iron absorption.
1. Don't use coated or delayed-release tablets, since these release the iron farther south in the gut - after the area in duodenum where most of the iron is absorbed.
2. Take it along with 500 or 1000 mg vitamin C tablet. which will increase absorption.
3. Take it on an empty stomach, first thing in the morning. If you start to feel a little stomach upset after a while (iron commonly does this, but not always) eat a little yogurt to sooth the stomach.
If after your infusions you wish to try tablets again to maintain or boost your iron status, there are things you can do to increase your iron absorption.
1. Don't use coated or delayed-release tablets, since these release the iron farther south in the gut - after the area in duodenum where most of the iron is absorbed.
2. Take it along with 500 or 1000 mg vitamin C tablet. which will increase absorption.
3. Take it on an empty stomach, first thing in the morning. If you start to feel a little stomach upset after a while (iron commonly does this, but not always) eat a little yogurt to sooth the stomach.
I hate to be the bearer of bad news but a hemoglobin in the single digits means your disease is way out of control. the iron infusions are just a band aid for your hemoglobin. it may come up a little but you really have to get the blood loss to stop by treating the disease more effectively.
I lived this entire scenario last year. declining hemoglobin and iron infusions but not having the disease really in check because I was still bleeding. I only got better once we got aggressive with the disease and the anemia then improved with iron infusions. We did Venofer at first but since I was still bleeding it didn't do much. Those are 200mgs each. I did 10 of those. I switched doctors to an IBD specialist and changed my treatment totally, she also put me on Injectafer which is MUCH stronger, 750mgs of iron. My hemoglobin went from 10.1 to 15.4!! Now in the 14's with no iron since early November!!
are you just taking 6MP? your signature says you're in the Remicade club too - are you on it?
also, if you do decide to go oral route for iron be careful with Vitamin C. I took a very low dose 250mg and got terrible acid reflux. Vitamin C is just ascorbic acid after all, not sure if you really need it since your stomach releases its own acid. IV iron is better for Crohn's patients anyway.
I lived this entire scenario last year. declining hemoglobin and iron infusions but not having the disease really in check because I was still bleeding. I only got better once we got aggressive with the disease and the anemia then improved with iron infusions. We did Venofer at first but since I was still bleeding it didn't do much. Those are 200mgs each. I did 10 of those. I switched doctors to an IBD specialist and changed my treatment totally, she also put me on Injectafer which is MUCH stronger, 750mgs of iron. My hemoglobin went from 10.1 to 15.4!! Now in the 14's with no iron since early November!!
are you just taking 6MP? your signature says you're in the Remicade club too - are you on it?
also, if you do decide to go oral route for iron be careful with Vitamin C. I took a very low dose 250mg and got terrible acid reflux. Vitamin C is just ascorbic acid after all, not sure if you really need it since your stomach releases its own acid. IV iron is better for Crohn's patients anyway.
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updated my signature there now!was on remicade before but had an anaphalactic shock 9th infusion. My crohn's is doing well since I started the 6mp about a month ago. i am tapering steroids down to 5mg on Monday and so far the crohn's has not resurfaced thank god . I have been taking ferrograd c and my ibd specialist told me to stop it, and booked iron infusion monday week I think it is the ferinject as it only takes 15minutes. he is giving me 1000mg. I thought I was having fatigue and loss of appetite due to the 6mp but the specialist says it is anemia. Also I stopped taking the ferrograd and my appetite has improved so I think it was actually the ferrograd c that was not agreeing.
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Glad things are better
Hijacking thread -- what did you do to more aggressively treat your Crohns? I am only treating with Pentasa (and lots of supplements!) and like you drop to single digit hgb then get infusions to boost myself up and then it drops down again. Unllike most on here,once I found my off-limit foods, I have had very few symptoms other than the re-occuring anemia. So it is hard for me to justify anything stronger than Pentasa on a daily basis, but wish I could control the anemia better.
My hematologist (who does the infusions) is fine with this course of treatment. My GI (who put me on Pentasa) keeps checking my stool for blood and never finds any. Like never ever in the three years since I was first diagnosed. I have a secondary issue (GAVE, aka watermelon stomach) which can also cause bleeding, but they have only seen evidence in one scope out of four in past three years - and that was already healing. SO that seems under control.
Not sure if I should just be a bit more vigilant on monitoring my blood but otherwise carry on as normal or if I should look for another strategy.
Like aypues, I have had both venofer and injectofer. I much prefer the injectofer due to the higher dose and the fewer infusions needed to fully recover. What is like to happen with either is that for your very first infusion, they will give you a mini-dose, which isn't going to help a whole lot. It is often done to make sure you don't have any adverse reactions to the drug. So my first round of venofer was four weeks, one per week. After that, each round was three weeks, once per week. If that full 3-4 week round did not show high enough results, I had to wait a month before starting another round. Partially to monitor how well my body was rebounding on its own after getting the extra iron, and partially do to concern over building up too much of something that was in the infusion - that your body needs a break.
Once my hgb was finally up to 9, the venofer treatments seemed to show a noticiable effect after about 5-8 days. When my hgb was in the 5's - 8's nothing seemed to make me feel like I had any more energy. So you are starting a decently high value that the infusions should help within a couple of weeks.
It is interesting reading other people's experiences. Several people report having benadryl with their infusion - either orally or more often IV as a preventative measure. Some people report the process taking 45 minutes, others say 2-3 hours. SO there is defiinately variation in the actual delivery. YOu may wish to check Monday morning how long they expect the process to take if anyone will be waiting to see / hear from you afterwards.
One final note- and I do not mean to scare you by this - it is possible to tolerate the infusions well and then suddenly develop an adverse reaction to them. I didn't really know this, so I was really shocked to have an adverse reaction to Injecotfer after having it at least 5 times previously. And that the reaction occurred five minutes after walking out the hematologists door. I immediately returned and they were able to turn things around with a couple of saline/ Benadryl IVs.. was ok within an hour but they wheeled me over to the adjacent ER for 4 hours of observation before releasing me. So just make sure you are self-monitoring how you are feeling for the first hour after an infusion and that if you feel at all odd to get medical help. The treatment was quick and easy since I started it quickly. Just don't ignore any unusual symptoms, and consider waiting 10-15 minutes before driving away, just in case.
Good luck Monday!!!!
Excellent point!! and make sure to have your folate levels checked as well.
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Going to go out on a limb here. To start with, I had a stretch of over 3 years with severe anemia - levels in the 70's were regular, even dropped to 50's. Had over 60 units of blood in that time, about every 1.5 months. Whole lot of iron infusions too.
My previous GI didn't want to listen when I suggested there might be bacterial involvement. Pill cam later showed a large number of lesions and scars. The thought literally occurred to me today that this may have been H pylori (stomach ulcer bacteria). I did a blood test a couple days ago for it. Currently showing many symptoms of the infection.
http://www.healthline.com/desktop-article/helicobacter-pylori?variation=nolb
There is a breath test that apparently is fantastic for it, however it can also be detected in blood work. If you are getting some done, it might be worth suggesting it to your doc.
My previous GI didn't want to listen when I suggested there might be bacterial involvement. Pill cam later showed a large number of lesions and scars. The thought literally occurred to me today that this may have been H pylori (stomach ulcer bacteria). I did a blood test a couple days ago for it. Currently showing many symptoms of the infection.
http://www.healthline.com/desktop-article/helicobacter-pylori?variation=nolb
There is a breath test that apparently is fantastic for it, however it can also be detected in blood work. If you are getting some done, it might be worth suggesting it to your doc.
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WebMD has similar information about it. I may have inadvertently helped it along by cutting out my lemonade a couple months ago.
I don't recall the website, but apparently H pylori can attack the mouth as well.
Just found this:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4123373/
Interesting reading. Worth following up.
I don't recall the website, but apparently H pylori can attack the mouth as well.
Just found this:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4123373/
Interesting reading. Worth following up.
Thanks for the comments, I will definitely be vigilant and wait around as when I had the reaction to the remicade it was very scary!
On the H Pylori, I had this in 2004. This is actually the reason why I think I developed crohn's disease, I had symptoms that time, very bad ulcer pain directly after eating it was terrible. I went a good while without a diagnosis as the doctors were giving me losec and then testing me but the losec apparently hides it. They eventually did a blood test for it and it came back positive. The antibiotics worked very quickly.
On the H Pylori, I had this in 2004. This is actually the reason why I think I developed crohn's disease, I had symptoms that time, very bad ulcer pain directly after eating it was terrible. I went a good while without a diagnosis as the doctors were giving me losec and then testing me but the losec apparently hides it. They eventually did a blood test for it and it came back positive. The antibiotics worked very quickly.
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Still worth checking again. My mother had this and took antibiotics last fall, but she feels it may be back. It apparently is contagious and very easily spread.
so reoccuring anemia means the disease is not under control even though you may "feel ok". this is my conclusion.
I felt "ok" for years but had reoccurring anemia and low iron. My GI doctor was out of it, totally. He had me on Entocort and oral iron for 5 years! I ended up with out of control disease and pre-osteoporosis! I finally started having real pain which he couldn't manage so I switched to an IBD specialist - that was the difference for me - and we have one of the top offices for IBD in the world right here at UCSD, I am very lucky to be here. My new IBD doc put me on 40mg of Prednisone to stop the bleeding, which I tapered off of within 2 months. I also started Remicade, and Cellcept (because I cannot tolerate 6MP or Methotrexate) - to prevent auto-antibodies to Remicade. COMPLETELY stopped the pain and anemia!! After the loading doses of Remicade I started experiencing some pain for the first time in a couple months and my iron dipped a bit - she doubled my dose to 10mg/kg and the interval was dropped to every 6 weeks. I actually overloaded on Injectafer at this point - I developed joint pains everywhere which were from a little TOO MUCH iron and is from macrophages taking up the excess and depositing into the joint spaces. Anyway, you get temporary arthritis for 3 months and then it vanishes once the macrophages die - almost no doctors knew what was going on, try not to overdose on Injectafer! it's not fun! Anyway, my albumin was still a bit low so we decreased the Remicade interval AGAIN to every 4 weeks, which will be temporary she says, and then back to every 6 weeks I think once I am really, really in remission totally. I had out of control disease for years so we are being quite aggressive. My iron and hemoglobin is now normal and I haven't had an iron infusion since 1st week of November!
btw- for parasitic bleeding a fecal occult blood test is the wrong test to order and will show negative. my old, out of it, GI doctor ordered this and was negative, but I was definitely internally bleeding and had declining hemoglobin and iron!
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Interesting thread!
I get Injectafer infusions whenever my HB is low or is trending low, hoping to catch it before it gets bad. he infusions only take 15 minutes and I don't get Benadryl or similar.
I think it took longer the first time but now it's just into the infusion centre and out again within 30 minutes.
I do find it takes a long time to work though, at least 2 to 3 weeks before I start noticing I can walk up a small hill without losing my breath.
I get Injectafer infusions whenever my HB is low or is trending low, hoping to catch it before it gets bad. he infusions only take 15 minutes and I don't get Benadryl or similar.
I think it took longer the first time but now it's just into the infusion centre and out again within 30 minutes.
I do find it takes a long time to work though, at least 2 to 3 weeks before I start noticing I can walk up a small hill without losing my breath.
How did it go? Meant to ask yesterday but was too tired to log on.
It does say that Crohn's affects our emotions so quite possible
oops - sorry, wrong Monday! Sorry you are still waiting. I got the first of the series this week Monday and get the second next week Monday. My ferritin had dropped from 105 in August to 6 in February so the exhaustion wasn't just in my head. Hoping by the end of the weekend I will actually feel some of the effects of the infusion, but often I don't really start feeling it until the second infusion -- be patient next week.. the infusions really do help but they do take a bit of time to kick in. Injectafer works faster than Venofer if you can take it (some insurances won't cover because much more expensive - at least in the US).
But by next weekend you ought to feel a bit less fatigued, and then a few days after the second infusion the fog should lift.
I'm looking forward to it, I am really looking forward to being able to do some exercise again without feeling like I'm going to have a heart attack! Exercise is so important even a tiny bit and I don't seem to be able to do that lately. I get breathless very easy. I'm a bit annoyed that they didn't do this years ago, as I am had anemia since i was a child on and off.
Yes, I definitely have not been proactive enough anyway with it comes to taking blood tests , my new years resolution was to keep more of an eye on myself and be proactive rather then reactive. Were you loosing blood at the time?
My GI set up a standing order with the lab to have my blood drawn and iron checked every six months. The severe anemia I had was the sickest that Crohn's has ever made me. And it snuck up on me without my noticing until it was quite far gone. If it happens again I hope to catch it much earlier with the blood tests so that I don't end up back in the hospital getting emergency transfusions again.
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Ya I was, didn't know it at the time.
I have found that I have become extremely attuned to my body's signals. Like you, my severe anemia (hgb of 4.6 - YIKES!! that one put everyone in a panic) snuck up on me. Now that I am getting IV iron 2-3 rounds per year I can tell when I am low - EVERY time I start to suspect it is low, I get tested - and the hgb levels have only come back normal one time that I called in for a test -- and two days after that it turned out my ferritin was close to zero even though my hgb was fine... so make sure they chack both when you feel low.
Today was my third venafer infusion this month -- and feeling increasingly nauseated as evening wears on, Started during infusion, Nurse said if I continued to feel this was they could add an anti-nausea drug with the IV next week. Anyone experience this before?
They do check both. They do a full iron workup. The home test I devised to detect when I'm getting anemic is to walk briskly up a long flight of stairs. If I can still breath normally or close to normally by time get to the top, I'm not anemic. If it makes me start breathing hard then I'm starting to get anemic. If I'm gasping and feel like I have to stop and rest, I'm very anemic.
hi everyone
I just wanted to update on how I am feeling since. I have to say I don't know myself. Since about last Monday I feel like a new person. Feel a lot more energetic, my mood has improved also and my appetite very good. Just goes to show the symptoms that I was putting down to my crohns and 6mp were actually purely down to anemia. It makes me wonder how much of our symptoms are down to vitamin and mineral defencies and maybe doctors need to be a bit more proactive with it comes to testing us for this, it should be standard as part of our treatment plan. As a side note I also started reflexology with the last 3 weeks, I have had two sessions. Don't know how much that has contributed to my new found well being but hey I'm not complaining either way!!
I just wanted to update on how I am feeling since. I have to say I don't know myself. Since about last Monday I feel like a new person. Feel a lot more energetic, my mood has improved also and my appetite very good. Just goes to show the symptoms that I was putting down to my crohns and 6mp were actually purely down to anemia. It makes me wonder how much of our symptoms are down to vitamin and mineral defencies and maybe doctors need to be a bit more proactive with it comes to testing us for this, it should be standard as part of our treatment plan. As a side note I also started reflexology with the last 3 weeks, I have had two sessions. Don't know how much that has contributed to my new found well being but hey I'm not complaining either way!!
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ok my iron is listed as 8.7 umol/l and % saturation 14. Ferritin at 25. My doctor says im anemic and my gi doctor never mentioned it all. I could sleep for 12 hours straight and still have a nap. Its ridiculous. I have bowel bleeding on a daily basis. Just completed a pill camera test yesterday...( that was a day and half. uggh) I don't know, but no one has suggested an iron infusion, though maybe I don't need it. Also they did not prescribe any iron tablets either as no one wants me to become constipated (which can be an issue with me) So I took it upon myself to go to the health store and find a liquid iron supplement that is non constipating. But I cant see that it has helped any so far. My b12 is great. Well above the recommended range. Perhaps you guys will know if these levels need to be treated with an infusion. I wont see the gi specialist for a month but I could get in to see my regular doctor any time.
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I wonder this a lot too since my levels are off alot. I'm so weak right night it was all I could do to get out of bed and sit and type for awhile.
