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MustLoveDogs
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Date Joined Jan 2009
Total Posts : 394
   Posted 2/3/2009 9:16 PM (GMT -7)   
It seems like being anemic is another lovely "side effect" of Crohn's/UC nono    My daughter just started taking iron pills and I am concerned about how well they will be tolerated - I know some meds you cannot take close to the time you take an iron supplement (Thyroid meds for example)...does this apply with Asacol or 6-MP?

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/3/2009 9:56 PM (GMT -7)   
Prenatal multivitamins with iron work better for me and are easier on the stomach. You might try looking into those?
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 2/4/2009 2:03 AM (GMT -7)   
i cant take iron pills, i get iron through infusion at the hospital when i am low.
the iron pills are not good for your belly :S
24 year old female

Diagonsed with Crohns disease in December 2008..

Medication - Asacol, Remicade, Entocort


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 2/4/2009 2:50 AM (GMT -7)   
isergodur,

Can you tell me me a little about Entocort. What kind of symptoms were you having before being prescribed Entocort? How long did you have to wait to see results from Entocort? How long does you doctor want you on Entocort? I ask because I am on it and I am curious.
26m - Dx January 2005
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 2/4/2009 3:53 AM (GMT -7)   
i have been on entocort now for 7 months i have not seen any results yet :S As in i have not got any better or worse since taking it.
So i dont even know if it is working.
i have to go about 4-6 time to the toilet a day now but i am not sure if it is the entocort that helped with that or the steroids or remicade
i am taking so many drugs i am no longer sure which is helping :S

My doc wants to keep me on it until we see results from the Remicade treatment.

The symptoms i was having where constant D about 20-30 times a day and lots of blood with the D.

i was only taking Asacol and entocort for about 2-3 months and i kept getting worse so i could not see that it was helping :( Started taking this in august and ended up in the hospital on 10. November. I have been on steroids since then and on Remicade 9.jan so i think entocort has been no help for me..
24 year old female

Diagonsed with Crohns disease in December 2008..

Medication - Asacol, Remicade, Entocort


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1499
   Posted 2/4/2009 4:27 AM (GMT -7)   

Gwen,

Yes, Anemia is a very common side effect. You shouldn't have too much trouble with iron, except for possible constipation. You also need to take a certain type of iron supplement. Ferrous fulmate is the likely prescribed. The one my daughter takes is Palafer. Also, keep in mind that it can take up to 6 months to work.

Tom.


My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Initially, 9 weeks of Prednisone, currently taking 2000mgs of Pentasa.


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 2/4/2009 7:11 AM (GMT -7)   
Sorry to hear that you are not getting better. I had really bad pain in my stomach area before I was put on entocort. Entocort instantly took the pain away. But the blood remained. I have finished the 1st month of Entocort now, and I still have blood. I started a liquid diet. There were some days when I had a lot less blood. Now, I amjust thinking, you know what? What can I do? I guess this will be normal for me now.

Can you please tell me the dosages you have been taking of Entocort? I read on the Entocort site that you are supposed to have 9mg for 2 months and possibly 3 more months at 6mg. You are over that time limit. How long does your GI want you to stay on Entocort?
26m - Dx January 2005: UC/Crohn's
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/4/2009 7:38 AM (GMT -7)   
I too am anemic. But I cannot take the Iron tablets or liquids either. I get iron infusions when needed, and think will be getting another in the next month or so.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/4/2009 8:17 AM (GMT -7)   
Iron wrecks my gut, causes cramping, diarhea (as opposed to constipation) and bleeding. I would highly recommend you to not take these if they bother your gut as I think they caused/exacerbated my flare.

Iron is also strongly advised against on the SCD diet, if you are looking at that.
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 2/4/2009 9:44 AM (GMT -7)   
I'm another that can't tolerate iron pills... they really do me in. I've had iron given through an IV before, but I seem to keep my head above water just using my iron skillet everyday. Granted, that's not exactly functional for every meal, but if the pills aren't tolerated well, there are easy lists of iron-rich foods and tips to help while you guys figure out what works and what doesn't.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 2/4/2009 2:34 PM (GMT -7)   
i take 9mg and i don't know how long he wants to have me on this dosage he has not talked about it with me :S I never asked :P

But i hope the blood will stop it is killing my poor little soul to see all this blood all the time :(
24 year old female

Diagonsed with Crohns disease in December 2008..

Medication - Asacol, Remicade, Entocort


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 2/4/2009 2:39 PM (GMT -7)   
9 mg total of Iron?

Our DR said to take three 50 mg tablets a day...and my daughter is only 10!
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol and 50 mg 6-MP


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/4/2009 2:46 PM (GMT -7)   
MustLoveDogs sorry they kinda highjacked your post, the 9 mg they are talking about is the Entocort that Nostrahistoria was asking about not the Iron supplement.

Also, watch how your daughter does with the Iron, it can be very hard on the gut and can cause constipation. I hope she gets her Anemia under control soon.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 2/4/2009 8:57 PM (GMT -7)   
I wouldn't be tooo worried about the dosage. I take ferrous sulfate and I take 2 50mg tabs a day (which isn't close to the tolerable upper limit, my GI said lots of people take 3 pills a day). If she is severely anemic they are probably just trying to get her iron stores back up. I take Pentasa (in the same family as Asacol) and haven't had any problems with the iron pills. The only time they ever cautioned me about the iron pills interacting with something is when I was taking Cipro. She should be ok but if you are concerned about it def bring it up to the doc. They can explain to you why they feel a high dose is necessary right now and maybe you could talk about lowering it once her iron stores are a bit higher.
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/4/2009 11:24 PM (GMT -7)   
Solgar's Gentle Iron worked well for my daughter - no side effects at all. She takes it with OJ and makes sure she doesn't take supplements or eat within two hours of taking it. 25 mg daily - sometimes she doubles up on it.

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 2/5/2009 12:22 AM (GMT -7)   

I can't tolerate iron pills - I just get the infusions as needed. What a gift they are! No side effects, no daily pills, almost instant results, and long lasting. It's been 1.5 years since my last infusion and I'm still maintaining a normal level.

I hope you can find the right iron source for your daughter soon.


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 2/5/2009 12:45 AM (GMT -7)   
Sorry for hijacking the thread.lol.

luglug, I am so depressed from seeing the blood as well. I have been seeing it everyday since July 2008. I hope I do not have to go on prednisone, but it looks like I will have to in the future.

Hang in there. I hope it gets better for you. If it makes you feel better, here is a thread with people who testify having blood for years: http://www.healingwell.com/community/default.aspx?f=38&m=1353852
26m - Dx January 2005: UC/Crohn's
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 2/5/2009 3:21 PM (GMT -7)   
I'm anemic too and B12 shots save the day always! Maybe you could try that? Iron tablets are really hard on the stomach unfortunately but she should try taking it :( But definitely try the B12 shots too. Have you checked the level of her Feritin? It's basically shows the accumulation of iron in your cells, which is far more important than the Iron test alone - which shows the level of the iron in the blood. Every time I get a B12 shot my Feritin goes up and I don't feel as tired. I get it once a month.

If your daughter is on 6-MP she should definitely be taking Folic Acid everyday! HIGHLY IMPORTANT! The deficiency of the folic acid can also lead to a certain type of anemia. I was taking iron while being on Imuran, which is just like 6MP and I didn't have any problems with it besides that they're both hard on the stomach :( she shouldn't take any of these on an empty stomach...

I'm still anemic even though I take Folic Acid and b12 shots...but i sure know my CD would get even worse if I didn't take this.

I'm 21 and you're daughter is still developing so like I said HIGHLY IMPORTANT!!

:)
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.

Post Edited (caroline_r) : 2/5/2009 3:25:20 PM (GMT-7)


MustLoveDogs
Regular Member


Date Joined Jan 2009
Total Posts : 394
   Posted 2/5/2009 5:15 PM (GMT -7)   
Thanks for the information Caroline
Her hemaglobin was low - all other "iron aspects" came back OK
Gwen
 
10 yr old daughter diagnosed with "UC-like Crohn's" 12/08
currently on 2400 mg Asacol and 50 mg 6-MP


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 2/5/2009 7:45 PM (GMT -7)   

Thanks, Caroline, for pointing out the connection between low B12 and low iron.

My daughter's serum iron and TSAT went wacky, even though her ferritin was OK and we were left scratching our heads until we figured out the timing concided with when her B12 dropped to 300 (despite supplements).Then we did the research and found out B12 is needed to be able to effectively use iron.


caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 2/6/2009 12:11 AM (GMT -7)   
njmom said...
Thanks, Caroline, for pointing out the connection between low B12 and low iron.

My daughter's serum iron and TSAT went wacky, even though her ferritin was OK and we were left scratching our heads until we figured out the timing concided with when her B12 dropped to 300 (despite supplements).Then we did the research and found out B12 is needed to be able to effectively use iron.


:) Exactly! Your Ferritin doesn't even have to be low. And again I just have to stress the importance of taking Folic Acid everyday when you're on 6MP, Imuran or Pentasa. It's a must! Because those drugs "kill" our Folic Acid and the chance to get cancer is even greater.
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/6/2009 7:16 AM (GMT -7)   
I am anemic right now. And I have to respectfully dispute caroline_r when she says that the B12 will increase the iron. I get B12 shots every 2 weeks and still I am anemic. Maybe what she is saying is true if just your iron is low, I don't know, but when the Ferritin which is your Iron storage level is low the B12 alone is not enough. I had to get an Iron infusion last fall because of my anemia, and looks like I will be getting another one soon as I am again anemic. JMHO
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

caroline_r
Regular Member


Date Joined Apr 2004
Total Posts : 94
   Posted 2/8/2009 3:42 AM (GMT -7)   
Nanners said...
I am anemic right now. And I have to respectfully dispute caroline_r when she says that the B12 will increase the iron. I get B12 shots every 2 weeks and still I am anemic. Maybe what she is saying is true if just your iron is low, I don't know, but when the Ferritin which is your Iron storage level is low the B12 alone is not enough. I had to get an Iron infusion last fall because of my anemia, and looks like I will be getting another one soon as I am again anemic. JMHO


Indirectly B12 does increase the iron. I didn't say I got rid of my anemia by getting B12 shots, but I have noticed a big difference when getting it. I'm still anemic but my Ferritin levels go up and very soon they go down, but at least I don't feel as tired as I would feel without getting B12 shots. That doesn't mean I feel great. I don't feel great, I'm very tired all the time, going up the stairs is hard, I can't even walk for a long time without getting so tired that I feel like I'm off balance and like I could fall any second, and it takes a lot of effort for me to stay on my feet. Honestly 10 minutes of walking makes my body feel so heavy. After going to the bathroom I can barely breathe and my heart starts racing really fast, and it take a few hours for my body to calm down - from pooping alone. But with the B12 shots I at least feel like I can read without falling asleep right away and I have a little bit more energy, studying is still a problem but like I said, I feel the difference.

Do you take folic acid pills? With all the meds we have to take Folic acid is a must...and we can always get folic acid deficiency anemia, even with taking the pills.
21 yr. old with crohn colitis. Diagnosed in March 2004. No surgeries so far.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/8/2009 6:39 AM (GMT -7)   
No caroline_r I don't take Folic Acid. My gut is such a sissy with supplements. Folic Acid is supposed to be one of the easier supplements to take, but it does my stomach in. This week I am trying to add Vitamin C into my regimen as I heard it helps you to absorb iron from foods etc. Its kinda a wait and see. My gut has been bothering the past few days and don't know if its the additional C or something I ate.

The B12 does help to give me a little more energy, but I still take a nap, before I go to bed:)
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/8/2009 10:01 AM (GMT -7)   
I don't think B12 has anything to do with ferratin. Ferritin are the iron stores, not B12.

My Gi said that folic acid is necessary with MTX but not with 6MP.
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.

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