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Crohn's Disease Forum » Parents of Kids with IBD » Possible causes of anemia


12-11-2014, 05:10 PM   #1
KimberlyKC
 
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Possible causes of anemia

My daughter Jillian was diagnosed with rheumatoid arthritis in 2012 and then Crohn's last year around this time. She responded really well to salfasalazine and all of her inflammation labs came back great! sed rate, CRP, etc. were all back to normal. However, through this whole time she has struggled with anemia despite taking a LOT of iron. So they started remicade a couple months ago. Her iron levels are normal so she's absorbing iron. Her hemoglobin is still dropping and was at 9.5 last week. She's sooooo tired. Stool test came back negative for blood today.

My question. If her inflammation is under control and she's not losing blood what could cause the anemia? Does anyone have experience with this?
12-11-2014, 06:37 PM   #2
my little penguin
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Ds has low ferritin levels in Jan. 2014
He was dx with juvenile spondyloarthritis in June of this year .

He has been on Chelated iron since jan .

Anemia is an EIM of both JIA and crohns
Is she on iron infusions or just orally ?
Does she avoid milk when taking it and drink citrus ?
Did they do iron studies including ferritin levels ?

Also realize it can take at least a year to increase levels
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12-11-2014, 08:08 PM   #3
Farmwife
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Hi and welcome.
My 5 yr old has IBD and arthritis also.
Grace has never had anemia but still has fatigue.
I'm wondering if it's her arthritis causing muscle fatigue.

How much Sulfasalazine does she take? Could it be a side effect for your dd?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-11-2014, 10:17 PM   #4
xeridea
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Her iron levels are normal so she's absorbing iron. Her hemoglobin is still dropping and was at 9.5 last week. She's sooooo tired. Stool test came back negative for blood today.

My question. If her inflammation is under control and she's not losing blood what could cause the anemia? Does anyone have experience with this?
This article may provide some insight and background on the reasons for iron deficiency in IBD and other inflammatory diseases, and also provides some findings regarding correcting the issue.

http://www.biomedcentral.com/1471-230X/14/184
12-11-2014, 10:49 PM   #5
Catherine
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Has she had iron studies done? Have you had folate and B12 levels checked?

My guess would be that the inflammation is not under control.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
12-12-2014, 10:34 AM   #6
KimberlyKC
 
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Thank you for your help!

* I don't believe they have done ferritin studies - just iron.
* She takes 2 slow release iron pills. They said giving her more wouldn't help because her iron levels are good so it's being absorbed.
* Could there still be inflammation if sed rate and CRP are normal?
* She takes 600 salfasalazine and remicade infusions
* I believe they checked her folate levels but haven't seen them. She take 1mg folic acid to counter the salfasazlazine. she was low on zinc but it is better now. not sure about b12.
12-12-2014, 12:18 PM   #7
my little penguin
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Fwiw Ds iron leveks have always been fine
But his iron stores ( ferritin were low )
How much iron is she taking?
Ds takes 50 mgs once a day .
Different types of iron are absorbed differently .
You can easily have inflammation even of your crp or sed rate are normal .
Ds have been normal but had obvious swelling in his finger joints and tendons .
12-12-2014, 12:53 PM   #8
Maya142
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ESR and CRP aren't good indicators of inflammation for many people. My daughter is one of them. She has had very swollen knees when her ESR was 2.

I would ask for ferritin definitely. My daughter's ferritin was so low that she had to have iron infusions. This was before she was diagnosed with Crohn's but after she was diagnosed with arthritis, so I'm not sure which one caused the anemia -- it really could have been either.
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diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-12-2014, 12:55 PM   #9
Maya142
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Just wanted to add - M's hemoglobin and very low ferritin so confused her pediatric rheumatologist and her pediatrician that we were sent to hematologist. Seeing him was actually really helpful.
12-12-2014, 01:46 PM   #10
KimberlyKC
 
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I just checked her labs and her ferritin was just done and it was normal (90) Iron was 74. TIBC was also normal. B12, folate and zinc were also all good. They are waiting for a stool test to come back that checks for inflammation and then will decide if we need a referral to a hematologist, which I am hoping for.

Thanks again for all your help!!
12-12-2014, 02:26 PM   #11
baistuff
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Dr. Baistuff's easy approach to anemia which can be very frustrating.....

Despite all the causes of anemia, there are really only 3 ways to become anemic.

1) You don't make red blood cells (or enough of them)
2) You destroy red blood cells (hemolysis)
3) you lose red blood cells (bleeding)


Any and every cause of anemia will fall into 1 of these 3 categories. 3) is the simple one. Either someone is bleeding (GI, GU- including periods, retroperitoneal etc..) or they aren't.

2) Hemolysis- destruction- can occur via the immune system (spherocytosis, TTP, etc..) infection, meds, other. Usually detectable on labs ( check for LDH, haptoglobin, fibrinogen, and often the destruction will increase bilirubin as well having nothing to do with the liver. )

3) Inabilty to make (enough) red blood cells. VERY complicated. If there is not enough iron, b12, erythropoetin ( hormone made in the kidney) poor bone marrow function- due to many conditions ranging from benign to deadly, underactive thyroid, medications that stun or slow marrow production (chemotherapies, even some antibiotics,) then anemia is likely.

The other thing to keep in mind is what we call Anemia of Chronic Disease or inflammatory anemia. Often in chronic conditions- autoimmune, kidney or liver disease, cancers, and many many others, the ability for the body to keep up the process (and its a constant one since red cells live only 120 days in healthy folks) just isn't there, and people are chronically anemic.

A proper workup- check the CBC. If hgb/hct are low, then look at MCV- MCV can give a lot of information. If low, usually indicates low iron, or if very low an underlying thallasemia trait which impairs hemoglobin sysnthesis. If MCV is high, it can mean b12 or folate deficiency, chronic alcohol (poisons the marrow) liver disease, pregnancy. If the MCV is normal, then consider things like medication induced, thyroid disease, and the catch all "Chronic Disease."


So after looking at the MCV, check iron, TIBC, ferritin (not always helpful,) TSH, b12, folate, LDH, haptoglobin. Then look at meds, exposures (alcohol, lead etc...) Can do a hemoglobin electropharesis to rule out a thallasemia or other hemoglobinopthy, and finally, and ONLY if suspicious of a primary bone marrow problem, a bone marrow biopsy.

I would say on this board, this vast majority of folks who are anemic and NOT bleeding and with NORMAL irons, probably are anemic due to just 'anemia of chronic disease/ inflammatory anemia" or due to medications.

Can be frustrating. Good luck.
12-12-2014, 02:35 PM   #12
baistuff
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One last thing.... the above is really the workup in adults. I do NOT treat children. However, I also did not see what meds you child was on at first. Many sulfa containing meds as well as Remicade (at least in adults) can be associated with anemia.

Medications and chronic disease- big causes of anemia in those who are not bleeding.
12-12-2014, 02:49 PM   #13
KimberlyKC
 
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How is anemia treated if it is caused from medications?
12-12-2014, 02:49 PM   #14
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Also, she was anemic before starting any meds - she was only on naproxen
12-12-2014, 03:10 PM   #15
baistuff
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Also, she was anemic before starting any meds - she was only on naproxen
someone with IBD on an NSAID????? That is not something many would suggest.


If the anemia predates the indroduction of any meds, then it certainly needs more of a workup than simply stopping a med a seeing what happens. If a med is suspected we stop it (with appropriate substitutes) and see what happens.

Of course it's entirely possible that before that med she was anemic from bleeding and active disease and now that is improved but now anemic from the med. Anemia can sometimes be tough to figure out. But as i said, there is an old rule in medicine- chronic disease can cause chronic anemia.

Start the with labs as mentioned above. Sometimes we even scope people even if stool is negative for blood just to make sure. Your anwer may be elusive for a while.
12-12-2014, 03:52 PM   #16
my little penguin
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Baistuff
She was dx with arthritis first
Later Ibd
So the naproxen was to treat the arthritis prior to any Ibd dx
12-14-2014, 08:34 PM   #17
baistuff
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Baistuff
She was dx with arthritis first
Later Ibd
So the naproxen was to treat the arthritis prior to any Ibd dx

Ah, makes sense.
12-15-2014, 10:32 AM   #18
KimberlyKC
 
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I will hear back later this week about the inflammation stool test. Then the GI physician will decide on hematology referral. It's so frustrating to not be able to treat it if it's caused form having a chronic condition. I can't let myself believe that she is going to feel this terrible her entire life.

I'll keep you updated on what they find out. Hopefully something that can be treated.
12-15-2014, 11:34 AM   #19
baistuff
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I will hear back later this week about the inflammation stool test. Then the GI physician will decide on hematology referral. It's so frustrating to not be able to treat it if it's caused form having a chronic condition. I can't let myself believe that she is going to feel this terrible her entire life.

I'll keep you updated on what they find out. Hopefully something that can be treated.


It doesn't mean she will feel lousy chronically. It can improve over time, and IBD tends to wax and wane as do its symptoms sometimes. Though I cannot back this up with evidence, I have seen/heard cases where childhood cases "burnout" a bit into adulthood. I actually know of one person who had a terrible time during her teen years and now in her 40's really has not had any crohn's issue for years. Takes a 5ASA and thats about it.

Also, there may indeed be a treatable cause- b12, thyroid. Anemia of chronic disease is very real, but before settling there it is important to rule out the other multiple causes.
12-15-2014, 12:28 PM   #20
my little penguin
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Hugs
I would focus on what your doing today to get through
Can you self refer to hemotologist
If even it just gives you a piece of mind.
Btdt many times of wanting to fix this symptom of that .
Sometimes things take more time ( my kiddo didn't get the memo on a few things of how long it should take or even the dosage )
Other times it just takes a different combo or to think outside the box.
Your kiddo can get back to Ibd normal -as in do what you want need etc...
Keep pushing you know your kid
Pull as many papers as needed ( NIH naspghan etc..)
If you need some topic in particular let me know
I have way too many things bookmarked may save you time
Aslo vent here
We have all been down on making the pain etc stop for our kids
It will get better
If you can't see a light at the end of the tunnel just March down there with your flashlight to create one
12-15-2014, 12:32 PM   #21
my little penguin
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One other thing that may help in the long run
23&me has a DNa study with pzfier
It gives you info on 1 million different genes out of 10 million
It's free for Ibd folks

Doesn't tell you if you have something
But may point you in the direction of something that could be contributing that she has a higher risk for

It was spot on for my kiddo
Identified the major issues we already knew
Crohns , JSpA and possible JAS later
12-15-2014, 01:03 PM   #22
KimberlyKC
 
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23&me has a DNa study with pzfier
It gives you info on 1 million different genes out of 10 million
It's free for Ibd folks

I signed her up for the DNA study. Thank you!
12-15-2014, 06:02 PM   #23
KimberlyKC
 
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stool test came back negative for blood and inflammation so hematology hopefully can help us with the anemia. Now I'm wondering if we shouldn't have started the remicade. The only reason was because of the anemia, she didn't have any GI symptoms and sulfasalazine brought her sed rate and CRP down to normal before starting remicade.
12-15-2014, 08:17 PM   #24
baistuff
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stool test came back negative for blood and inflammation so hematology hopefully can help us with the anemia. Now I'm wondering if we shouldn't have started the remicade. The only reason was because of the anemia, she didn't have any GI symptoms and sulfasalazine brought her sed rate and CRP down to normal before starting remicade.
That's a darn good question.
12-16-2014, 07:39 AM   #25
Catherine
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What stool test did they do for inflammation? Was it faecel calprotectin? Do you have actually number and range?

Where is the crohn's located?
12-16-2014, 08:56 AM   #26
crohnsinct
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When were her last scopes/imaging?

It certainly isn't the norm to have normal bloods and fecal tests and still have inflammation but we have seen it on the forum more than a few times.
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Daughter O dx 2/1/12 at age 12
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Remicade
Methotrexate (12.5mg wkly - oral)
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Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
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Folic Acid
Previously used: Mtx injections
12-30-2014, 12:06 PM   #27
KimberlyKC
 
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Yes, the test was calprotectin. I don't have actual number results. Her Crohn's is in the small intestine. Only symptoms have been abnormal ESR and CRP as well as the anemia and fatigue. Her last scope was christmas day last year and then a capsule study following in January of last year. That was when she received the Crohn's diagnosis. scope was fine but capsule study showed ulcers in small intestine. Hematology is supposed to call me today to get in for an appointment next week to figure out the anemia. I just don't understand if the salfasalazine worked perfectly to get ESR and CRP down to normal why she had to start remicade just for anemia. they just took her off salfasalazine because it can cause anemia.
01-20-2015, 02:48 PM   #28
KimberlyKC
 
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Thanks everyone for your help. They took her of sulfasalazine and her hemoglobin jumped up to 13! She has color back in her face and is feeling great. I even signed her up for TaeKwonDo:-) We should be able to cut back on iron and folic acid now.
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