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Iron levels and UC

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Posted 3/22/2012 5:47 PM (GMT 0)
How many of you have had your iron levels checked during a flare and had them be quite a bit lower, even if you aren't seeing blood? 

I already take an iron supplement as my 'normal' iron levels are on the low end of normal.  But I had primary care doc do some blood tests last week and my Iron Saturation level came back at 11% when the norm is 25-50, and my Iron level itself was 43 (when 35 is the low end of normal).  They suggested I go ahead and take a second Iron pill each day for now until its back to normal.

I am in a flare although down to 10mg of Prednisone (5mg starting tomorrow) and I haven't seen any blood since I started at 40mg back in late January. The bleeding pretty much disappeared within days of the 40mg.  I'm having formed BMs sometimes, sometimes really small and thin, sometimes normal. Some days 5-6 times a day, somedays (like yesterday) twice a day.  Hard to tell if the back and forth is from tapering the prednisone or the UC, but I know I see no blood.

My white blood cell count was a little high so showed I still have some inflamation left in my body, so something is still going on with the UC even if I can't really see it.  I'm super bloated and gassy but I am taking the enemas twice a day and they tend to do that.

Vitamin D and Potassium, plus everything else, came back normal!

Hope everybody's feeling well today,

Nikki

 

Posted 3/22/2012 6:05 PM (GMT 0)
My iron levels are always on the low end as well but never low enough to be worrisome. One thing to remember is that prednisone gives you an increased WBC. I wouldn't assume the higher wbc is due to inflammation, it may be a side effect of being on prednisone. My WBC is always on the low end of normal and while I was on pred, it was on the high end - even when I wasn't dealing with inflammation. Take it slow from 10mg to 0. I had to take it very slow from 15mg (2.5mg a week, even 1mg after 7.5mg).
Posted 3/22/2012 6:18 PM (GMT 0)
Thanks notsosicklygirl. I've been going back-and-forth on how to do my taper tomorrow - to either go right down to 5mg as the doctor told me to or to go to 7.5mg. The smallest pill I have is 10mg so I'd have to cut it in quarters which isn't too easy (or precise). 

I'm really having side effects from the Prednisone and already did the 5mg drop from 15mg to 10mg so I've been leaning towards just going right to 5mg. I 'think' I've done this in the past (although its been so long i can't remember) and didn't have an issue.  I definitely don't want to stay on this stuff for another 6 weeks so I won't go as low as the 1mg drop a week but I could maybe handle another extra 2 weeks.  It's really affecting my body though - almost to the point where I wonder if its worse than the UC itself - and sometimes I wonder if at this point no matter how I taper, I'll either flare back up or I won't so it doesn't really matter?  I guess I have till tomorrow morning to decide!

Posted 3/22/2012 6:27 PM (GMT 0)
Just keep in mind that you've been on the evil drug for a while and you've probably experience the worst. You're on a low dose and if staying on it another 2 or 3 weeks prevents you from flaring up, I think it's worth it to avoid another dreaded course of prednisone. If you're feeling unstable at 10mg, it could get much worse at 5mg. I am not saying it will - in my opinion, the best thing you can do is to pay attention to your symptoms, if you feel unstable, stay at the current dose for a few extra days and taper at 2.5mg instead of 5mg and hope you stay stable enough to get off without having to add new medication. I agree that the side effects of the pred are worse than the UC in some cases, I know at the end of my taper, I would have prefered to be stuck home pooping than looking and feeling the way I was.
Posted 3/22/2012 6:35 PM (GMT 0)
Is it reasonable to cut the 10mg tablets into 4 quarters?  I'm positive my doc won't agree with a slower taper as at Mayo they really don't want you to take steroids for longer than you absolutely have to. In fact he told me last week to get off of them as quick as I can and then we can see what happens and I'll go on Imuran if I flare back up which is not something I want to do.  So I know he won't give me a smaller mg tablet. 

I think staying on the 25mg for an extra 5 days while I was on vacation really got my body used to the drug - I was doing fine at the taper on the higher doses and about 3 days after the taper I'd feel back to normal.  Now it seems the effects of the taper never really go away but just sort of 'lessen' over the days.  So its hard to tell what my body is thinking! I know its not happy though :(

 

Posted 3/22/2012 10:11 PM (GMT 0)
I have had very low iron for almost two years, I do take Iron tabs every day, it's still low though.

I was going to ask if this would ever end.

I have been bleeding badly at times which hospitalized me 4 times, I had 13 units of blood altogether in just over 1 year.

I do seem to have it under control now for the last four months, I am wondering how it will be when I see my doc next week, I wouldn't be at all surprised if it was still low.
Posted 3/22/2012 11:34 PM (GMT 0)
My iron was low the entire time (and before) that I had UC. Once I had my surgery, my iron came up very quickly. It's higher now than it has been in years.
Posted 3/23/2012 1:37 AM (GMT 0)
You should read the posts re: iron supplementations effect on bad bacteria in the gut. Interesting study.

I get blood work done year round. When not flaring like its all me, during flare its covered by insurance. Been a little busy this remission so going tomorrow - first time in about a year, about 50 tests for 99 bucks at directlabs.com - this months Mens bundle special.
Posted 3/23/2012 1:47 AM (GMT 0)
my levels always get really low. right now, i'm ridiculously anemic so im taking 2 iron pills a day
Posted 3/23/2012 2:00 AM (GMT 0)
MNBeachgal - my GI also wanted me to get off pred as quickly as possible.  However, he also had me slow down my taper considerably when the 5mg drop caused problems for me.  They can call in an Rx for 5mg tablets for you - it makes cutting them into smaller increments easier and more accurate if you do decide to go w/ 2.5 mg. 
Posted 3/23/2012 4:22 AM (GMT 0)
Thanks everybody! I took two iron pills today and somehow felt much better tonight.  I'm wondering if that had something to do with my extreme tiredness.  Still got the gas though - those darn enemas!

I've also decided to taper down from 10mg tomorrow morning to 7.5mg instead of going right to 5mg.  I'll have to cut my 10mg pills in quarters since that's all I have and since my doc wanted me to keep at a 5mg taper, so hopefully I can get an accurate cut. Although even cutting the 10mg in half sometimes it seems the line on the pill doesn't help!  I've been feeling pretty good tonight, especially after going to a tough yoga class. Sometimes I think doing a hard workout (as long as you are feeling better) is good when tapering Pred as it raises your natural cortisol level for a bit. Didn't have any muscle cramps or joint pains today either so hopefully its evening out!

 

Posted 3/23/2012 2:45 PM (GMT 0)
It is very unlikely that benefits from iron pills can be felt in half a day. The iron needs to get absorbed, delivered to the bone marrow, used to make hemoglobin, and then starved body cells need to draw energy from the newly potentiated hemoglobin. Iron is absorbed slowly, and the process of making hemoglobing and red blood cells takes a few days, and the other body cells need a little time to get stronger as well.

The iron should help before too long, just not by dinner time. ALso, iron is very hard on the gut and can increase gas and/or nausea. I had so much trouble with every oral iron formulation I tried that I had to get IV iron infusions. I was bleeding a lot, and it took 12 infusions over 9 months to get me to "almost normal" - but I feel 300% better energy-wise.

I hope you get more energy soon. I know how much extreme low energy sucks.
Posted 3/23/2012 2:55 PM (GMT 0)
Luckily I've been taking an iron supplement for probably close to 8 years and it hasn't affected my stomach so its safe to say it shouldn't harm it much now. Maybe I'm one of the lucky ones, although I always take it with food even though its better if you don't. I just try not to take it with any sort of dairy product as it can prevent the absorption of it. I also take it with a Vitamin C chewable as that can help it absorb better. All the little things we learn after decades of UC right?
Posted 3/23/2012 3:20 PM (GMT 0)
I think, you could be wrong. You never know when it starts giving you troubles. If I were you, I would add beetroot in my daily diet. Just wash it well, grate it, add lemon and salt. Mix it well and your side dish is ready, loads of natural iron.

Use cast iron saucepan for your cooking. (DW did only that along with multivitamin during her pregnancy and was enough to keep her iron levels within the limits).

My iron levels have never ever been low, even during the flare or Pred course, so not too sure what I can say about that.
Posted 3/23/2012 4:45 PM (GMT 0)
My iron saturation is low also and I take iron daily. Sometimes it has nothing to do with UC. My sister has the same low iron saturation as I do and lucky her she has no UC!
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