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Crohn's Disease Forum » General IBD Discussion » Oral iron supplementation - any that worked for you?


11-21-2017, 09:39 PM   #1
Malice67
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Oral iron supplementation - any that worked for you?

My Crohn's is in the terminal ileum, mainly asymptomatic except a few off-limit foods that cause extreme pain for 2-3 days if eaten and a three year history of anemia which gets treated with iron infusions about every 6 months or so.

I can fairly accurately feel when my hgb has dropped below 11.5 and definitely feel poorly once it is in the 10's... but insurance will not allow infusions until below 10 -- which usually takes another 5-8 weeks... during which time I am exhausted. Then four weeks of infusions and I finally start feeling normal = for about 6 months (7 if I am lucky!) and then the cycle repeats. So basically 18-24 weeks out of the year I am exhausted.

Quite frankly. I am tired of being tired. Monday I go for my followup with the hematologist after my most recent series of infusions. Thought I would check about oral iron supplementation... I know you can't use at same time as the infusions, but it has been 3 weeks, so hoping it is ok to start now.

My thoughts is that now that my numbers are normal I might be able to keep them up longer with oral iron... if I can (a) tolerate it and (b) absorb it. So what have you tried? what has worked? What has been a waste of time?

thanks
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Diagnosis: Crohns of terminal ileum, GAVE ("watermelon stomach")
Current medication:
daily: Pentasa (500mg, 4x/day), probiotics, calcium, vit D, sublingual B12

as needed to control anemia: iron infusions (using Venafer since I had allergic reaction to Injectafer)
11-22-2017, 10:58 AM   #2
Jabee
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Iíve used ferrous gluconate 324 mg for years. My GI wanted me to take this kind specifically after I got anemic with my first flare. It has really helped.
11-22-2017, 11:31 AM   #3
Scipio
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I have battled anemia with my Crohn's. The iron pills that have worked best for me are the regular 65 mg uncoated type, not the delayed release kind. Most of the iron absorption occurs in the duodenum, just south of the stomach, and coated/delayed release pills do not release their iron until they are downstream from that, so not very much is absorbed.

I also take a 500 or 1000 mg vitamin C tablet along with the iron to increase absorption. I also take these on an empty stomach to further increase absorption - a half hour before breakfast in the morning and again a half hour before dinner in the evening.

This approach is consistent with what is published in the medical literature, and it has worked pretty well for me.
11-23-2017, 01:40 PM   #4
Malice67
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Iíve used ferrous gluconate 324 mg for years. My GI wanted me to take this kind specifically after I got anemic with my first flare. It has really helped.
I see it says to take without food unless that gives you upset stomach. What has been your experience? I was thinking of taking an hour before bed so not with other meds or food.
11-23-2017, 06:24 PM   #5
Jabee
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Itís never upset my stomach, which is great; so many other things do! I actually take it right before bed. I take most of my medications in the morning and take vitamins at night. I hope it starts to help soon.
11-24-2017, 08:35 PM   #6
Jess_inToronto
 
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I see it says to take without food unless that gives you upset stomach. What has been your experience? I was thinking of taking an hour before bed so not with other meds or food.
I was taking iron last year before my diagnosis when I had a really bad flare and didn't know it. I found the liquid iron supplement (in Canada the major brand is Palafer) to still cause stomach pains whether my stomach was empty or not. However, taking it before bed means that if you experience discomfort, you can hopefully sleep through the worst of it.

The iron was also easier to handle if taken with a glass of orange juice on an otherwise empty stomach. Literature is divided about if drinking orange juice to help iron absorption is actually helpful or not, but it seemed to work for me. Hope this is helpful!
11-25-2017, 07:06 AM   #7
shamrock15
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Proferrin was the iron pill that did me the most good. It is heme based rather than mineral based as is supposed to be easier to absorb. It was also considerably more expensive. I do not recall it causing me any stomach pains, however I was losing so much iron that I needed to get infusions.
11-25-2017, 02:58 PM   #8
Malice67
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Proferrin was the iron pill that did me the most good. It is heme based rather than mineral based as is supposed to be easier to absorb. It was also considerably more expensive. I do not recall it causing me any stomach pains, however I was losing so much iron that I needed to get infusions.
do you use the ES version or the Forte version which has folic acid? looks like in the States the ES version requires prescription....
11-25-2017, 03:01 PM   #9
Malice67
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I have battled anemia with my Crohn's. The iron pills that have worked best for me are the regular 65 mg uncoated type, not the delayed release kind. Most of the iron absorption occurs in the duodenum, just south of the stomach, and coated/delayed release pills do not release their iron until they are downstream from that, so not very much is absorbed.

I also take a 500 or 1000 mg vitamin C tablet along with the iron to increase absorption. I also take these on an empty stomach to further increase absorption - a half hour before breakfast in the morning and again a half hour before dinner in the evening.

This approach is consistent with what is published in the medical literature, and it has worked pretty well for me.
did it increase constipation? that has been an issue in the past for me.
11-25-2017, 05:49 PM   #10
shamrock15
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Mine was the regular one. I actually started on it when it was in its trial phase. I do believe that at least for a considerable time that it did require a prescription. I am not sure now though, I think it is just considered over the counter meds here in Canada. Luckily for me, I don't require it any more.
11-27-2017, 11:02 AM   #11
Scipio
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did it increase constipation? that has been an issue in the past for me.
The regular uncoated iron tablets do not increase constipation for me.

Some people do get an upset stomach from iron pills, especially when taken on an empty stomach. I do sometimes but not always. On occasions when I get a stomach upset I try to give it at least 30 minutes on an empty for some absorption to occur, then I eat a small amount of yogurt to decrease the upset.
11-27-2017, 02:22 PM   #12
Guerrero
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The only iron supplement I could tolerate was the one for kids in drops. It helped me stay out iron infusion for 3 to 4 months (instead of 2 months). I used it till april but then discontinued as my disease worsened a lot, and iron taken orally could upset the gastrointestinal tract and I want to avoid any risk.

I have a similar disease location than yours (ileum) and chronic anemia too. I'm lucky my new ibd team is not waiting my hemoglobin drop to 10 to give me iron injections, the previous one could keep me around 11 for months pretending it was not low enough to have injections...

My last iron infusion was in august and usually my hemoglobin starts to go down after two month but surprisingly it kept going up and was at 15 last month, which was a kind of multiyear high record for me... Hope that means Entyvio is working, but who knows with that disease.. my calprotectin was still high... hard to make any prediction, it's always a surprise and a mess
12-02-2017, 11:23 AM   #13
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I went through all the irons - ferrous sulphate, gluconate, fumarate - none worked. Liquid iron worked for me - sodium feredetate (brand name Sytron in the UK, it's the one given to women during pregnancy).

Even Professor Hunter notes in his book that this is generally well tolerated by IBD patients in his experience.
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Advocate of the dietary treatment of Crohn's, as detailed in The essential guide to controlling Crohn's Disease, Colitis and Other IBDs by Professor John Hunter

Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
12-04-2017, 12:17 AM   #14
Layla
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I wrote a reply a while ago but it seems to have gone missing.

The gist of it was that I haven't found oral supplementation to work in any worthwhile way but I do get iron infusions when I'm still somewhere in the 10's for HB.

However my GI lets it depend more on my iron panel, if that's also low then I get the infusion. Would that be something that would work for your insurance rather than just the HB?

I hate having to wait for the numbers to be low enough, especially because it takes 2 to 3 weeks before I can really notice a difference. Does it work any faster for you?
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Layla
Diagnosed with UC in 1994, CD in 2014, "IBS" in between
Lactose intolerant, IgA deficient and Arthritis.
Resection due to strictures in 2014
Currently taking: amitriptyline, zinc, multi vitamin, b12 shots, Vit D, B complex, magnesium, calcium, Psyllium and the occasional iron infusion, probably sarting a medical trial soon

Previously on Remicade, Humira, Prednisone, Azathioprine, MTX, Pentasa, Asacol, Salofalk
12-04-2017, 05:05 AM   #15
Malice67
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I wrote a reply a while ago but it seems to have gone missing.

The gist of it was that I haven't found oral supplementation to work in any worthwhile way but I do get iron infusions when I'm still somewhere in the 10's for HB.

However my GI lets it depend more on my iron panel, if that's also low then I get the infusion. Would that be something that would work for your insurance rather than just the HB?

I hate having to wait for the numbers to be low enough, especially because it takes 2 to 3 weeks before I can really notice a difference. Does it work any faster for you?
We do a similar thing, I have occasionally had a HG that was "too high" but gotten the infusion because my ferritin was at 4 or lower. - its just USUALLY the HGB is the first to fall low enough for infusions. So I do need to check my new insurance (company will switch providers in January) for the values of the rest of the panel. THanks for the reminder!
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