Crohn's Disease Forum » General IBD Discussion » Exhaustion from Entyvio, Iron supplementation, post-Prednisone taper or Adrenal issues?


05-12-2019, 02:58 PM   #1
Snitzer1
 
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Exhaustion from Entyvio, Iron supplementation, post-Prednisone taper or Adrenal issues?

I apologize for cramming so much information into a small space, but I would like to get a better idea where I stand health-wise.


I was on 40 Milligrams and did a slow taper-When I got to 10 Mg, I tapered 2.5 milligrams down per week; A slow taper.

Two days after I stopped the Prednisone, I had a flareup of diarrhea plus I've had horrible exhaustion.

I have had two Entyvio infusions so far with the next on May 14th plus I am taking approx 800% of the MDI of Iron as per my doctor's recommendations for my anemia.

I have also read that high doses of Iron can cause fatigue and diarrhea.

And I have had problems eliminating and wonder if I have anal stenosis: My Colonoscopy from four months ago and my recent MR Enterography showed no obvious blockages.


So between the Entyvio, stopping Prednisone, taking high doses of Iron and a flareup of some of my Crohn's symptoms, especially severe cramping before and during a bowel movement:


I'm trying to figure out why I'm so exhausted (my blood sugar levels are not bad).

Is the fatigue a combination of the Entyvio, the Iron, my anemia, being off of Prednisone and my Crohn's flareup?

Do I have adrenal issues because I am off of the Prednisone (I did a slow taper)?
05-12-2019, 03:37 PM   #2
MarkStrobel33
 
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Though I can't answer most of your questions since you probably should consult with your doctor for these answers, I can say that since beginning Entyvio a few years back, I have been experiencing much fatigue all day long, everyday. I have read a couple of studies which suggests that even if the Crohn's is in remission, one could experience significant fatigue. So, for me it is unclear as what exactly is triggering the fatigue.
05-12-2019, 08:04 PM   #3
Jo-mom
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It sounds to me it is more from the prednisone taper. Iron usually doesn't cause diarrhea or fatigue - usually iron is constipating if anything. It could be a number of things but your adrenals probably have gotten a little lazy after being on prednisone for awhile and the taper is probably causing the flare-like symptons, including fatigue. It is best to consult with your doctor though.
05-12-2019, 10:14 PM   #4
Snitzer1
 
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It sounds to me it is more from the prednisone taper. Iron usually doesn't cause diarrhea or fatigue - usually iron is constipating if anything. It could be a number of things but your adrenals probably have gotten a little lazy after being on prednisone for awhile and the taper is probably causing the flare-like symptons, including fatigue. It is best to consult with your doctor though.
Thanks. I just read that a small percent of people on Iron supplements get diarrhea, cramps and fatigue.

When there are so many concurrent issues: Crohn's, Entyvio therapy, Anemia, and being off of Prednisone, there are a lot of gray areas making it difficult to pinpoint the exact cause(es) of medical problems.

To be honest, I have read some people's testimonies in this forum who have had bad reactions from Iron supplementation.

I was taking about 600% worth of the MDI of Iron as per my doctor's recommendation, but I'm going to find some kind of food or more natural source of supplemental Iron.
05-13-2019, 10:49 AM   #5
Scipio
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Another thing to consider instead of iron pills is to get your increased iron intake via infusion. Your doc can prescribe it, and you won't have to worry about the diarrhea and other gut problems that iron pills sometimes trigger.
05-14-2019, 12:12 AM   #6
aypues
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2nd the IV iron idea. Oral iron is for the birds...too many side effects and takes forever to work.

What is your HGB? Ferritin?

The slow taper is good for Pred. Youíre probably back in action on that. But the anemia needs working on it sounds like.
05-16-2019, 10:02 AM   #7
crohnsinct
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You stopped prednisone before you even finished the loading doses of Entyvio? Entyvio is very slow to take over disease burden. My daughter's GI warned us it may take 12-26 weeks and that was actually my nephew's experience. If you are totally off prednisone now and experiencing your usual Crohn's symptoms it could very well be disease activity. But as has been said here, there are so many different factors it is hard to say for sure but I would be concerned about your bridge therapy stopping before Entyvio is fully functional.
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Daughter O dx 2/1/12 at age 12
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Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
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Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
05-17-2019, 10:49 PM   #8
Snitzer1
 
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2nd the IV iron idea. Oral iron is for the birds...too many side effects and takes forever to work.

What is your HGB? Ferritin?

The slow taper is good for Pred. Youíre probably back in action on that. But the anemia needs working on it sounds like.
My Ferritin (or Hemoglobin) is 10.8

I would love to get an Iron infusion, but the even the milder side-effects are insane.
05-17-2019, 10:53 PM   #9
Snitzer1
 
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You stopped prednisone before you even finished the loading doses of Entyvio? Entyvio is very slow to take over disease burden. My daughter's GI warned us it may take 12-26 weeks and that was actually my nephew's experience. If you are totally off prednisone now and experiencing your usual Crohn's symptoms it could very well be disease activity. But as has been said here, there are so many different factors it is hard to say for sure but I would be concerned about your bridge therapy stopping before Entyvio is fully functional.
Could you please list the side-effects of Entyvio that your daughter and nephew experienced while on Entyvio?

I actually had some good inflammation management on 10 milligrams a day of Prendisone (down from the 40 Milligrams I was originally on).

I'm tempted to ask my GI doctor if I should go on 10 mg of Prednisone until (hopefully) the Entyvio kicks in.

I do know that it takes time to kick in. I just had my third loading dose, but the fatigue, abdominal cramps, body temperature fluctuations and on and off body aches really bite, and yes, some of this must be my Crohn's flaring up because I underestimated the bridge therapy.
05-17-2019, 10:54 PM   #10
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It sounds to me it is more from the prednisone taper. Iron usually doesn't cause diarrhea or fatigue - usually iron is constipating if anything. It could be a number of things but your adrenals probably have gotten a little lazy after being on prednisone for awhile and the taper is probably causing the flare-like symptons, including fatigue. It is best to consult with your doctor though.
I recently found out that people with IBD often do not do well on oral Iron supplements as it can cause diarrhea and fatigue (as it did with me).

If you've gotten great results from Iron supplements, I am happy for you.
05-17-2019, 11:07 PM   #11
crohnsinct
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My nephew never experienced any side effects from Entyvio.

My daughter just had her third loading dose and so far so good. She is experiencing extreme fatigue and hair loss and I know people have said that Entyvio could cause this but so could the other meds she is on (Tacrolimus) and a Crohn's flare so it is hard to flesh out what is causing what.

So far no improvement in her symptoms even with the Tacro bridge therapy and rectal enemas.

Last edited by crohnsinct; Yesterday at 07:01 PM. Reason: typo
05-17-2019, 11:15 PM   #12
aypues
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My Ferritin (or Hemoglobin) is 10.8

I would love to get an Iron infusion, but the even the milder side-effects are insane.
Thatís getting pretty low. Sounds like itís your HGB.
Ferritin is another number.
What side effects? IV iron is not like oral iron at all regarding GI effects.
05-17-2019, 11:21 PM   #13
Snitzer1
 
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Thatís getting pretty low. Sounds like itís your HGB.
Ferritin is another number.
What side effects? IV iron is not like oral iron at all regarding GI effects.
My Iron total is 19 and the range is 50 - 180 mcg/dL

Iron binding capacity is 285 and the range is 250 - 425 mcg/DL (calc)
% Saturation is 7 and the range is 15-60%

Ferritin is 52 and the range is 20 - 380 ng/dL

The milder side-effects of IV Iron infusions are tachycardia(SP), fatigue, nausea, cramps and possible breathing problems to name a few-I do not mean to be a cynic-Its just that after the Entyvio, the Prednisone, the Crohn's itself and going from nearly three-years of a strict vegan diet (which caused my third and worst Crohn's flareup plus several other medical conditions), it gets frustrating now and then, and I am not a complainer and have zero victim mindset-I would just like some cut and dried or "black and white" results with few gray areas (e.g. possible side-effects from treatments).
05-17-2019, 11:26 PM   #14
aypues
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My Iron total is 19 and the range is 50 - 180 mcg/dL

Iron binding capacity is 285 and the range is 250 - 425 mcg/DL (calc)
% Saturation is 7 and the range is 15-60%

Ferritin is 52 and the range is 20 - 380 ng/dL
Try IV iron. Sounds like you need it.

They usually start ppl on Venofer, itís a small dose and very safe. 200mgs. Usually give 5 doses, for 1g of iron.

Feraheme is 510mg, twice. I got one dose today (feeling much better already). Another in 5 days.

Injectafer is higher still, 750mgs, twice, but can cause low phosphorus levels temporarily. I overdid it with Injectafer, so I stick with Feraheme now.

Good luck!
05-17-2019, 11:30 PM   #15
aypues
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The milder side-effects of IV Iron infusions are tachycardia(SP), fatigue, nausea, cramps and possible breathing problems to name a few-I do not mean to be a cynic-Its just that after the Entyvio, the Prednisone, the Crohn's itself and going from nearly three-years of a strict vegan diet (which caused my third and worst Crohn's flareup plus several other medical conditions), it gets frustrating now and then, and I am not a complainer and have zero victim mindset-I would just like some cut and dried or "black and white" results with few gray areas (e.g. possible side-effects from treatments).
Every drug has side effects but oral iron is far, far worse than IV iron. I experience almost no side effects. Try Venofer first, thatís the safest one and lowest dose.
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