Entocort works except for fatigue??

Franklight · Post by **Franklight** » Mon Nov 22, 2010 8:03 pm

Hello,
[I posted this just now under the "medication info" forum and realized that probably wasn't the right one. I'm sorry for that.]

I just joined this group!

I was diagnosed with CC this summer after blood tests and a sigmoidoscope. I've been on 9mg (three tablets) a day for about 3 months. After a 10 days to two weeks my bathroom habits returned to normal and I seemed pretty fine.

I have been lucky other than sudden urgent needs to get to the toilet immediately, I have never suffered from bloating, stomach pain, or any other physical symptom except tiring out easily and some additional joint and muscle pain except. The entocort took care of the symptoms and eased the tiring out so quickly.

But recently I've been getting amazingly tired very easily.

I am a vegan and stay away from most wheat (I know that gluten is in a lot of things besides wheat), but I never noticed any changes from diet except that a raw food meal would cause me problems.

My question is: even though the entocort has taken care of my diarrhea is it unusual to still be suffering from extreme fatigue?

Thanks for any info you can help me with.

Best of all to all of you,
Frank

Celie · Post by **Celie** » Mon Nov 22, 2010 9:57 pm

Hi Frank,
Welcome to the group. I, too was diagnosed this summer (with LC) and have been taking Entocort for about 4 months.

One of the listed side effects of Entocort is fatigue. It looks like fatigue was a problem for about 5% of those in the study. You may want to check with your doc to make sure something else is not wrong. Seems like you have been on it a while without problems.

One of the more experienced folks on the board will have more experience than I. I am one of them will be along soon. You have come to the right place. This group is full of great folks who are knowledgeable and willing to help.

Celie

Joefnh · Post by **Joefnh** » Mon Nov 22, 2010 9:59 pm

Hi Frank. First Welcome to the group. Its great that you have a diagnosis and are now pursuing treatments. As far as the Entocort, I looked briefly at a couple of the monographs listing the side effects and it does state that you should contact your physician if sustained fatigue develops after starting Entocort.

With that said CC is an autoimmune disease and do cause fatigue by itself. Basically your body is busy fighting itself.

If you are concerned I would contact your doctor just to be on the safe side.

Best wishes Frank

--Joe

grannyh · Post by **grannyh** » Mon Nov 22, 2010 10:20 pm

I can't say that the entocort caused any fatigue.. but I was tired all the time. I had D 24/7 for almost three years.. trapped in my house going through adult diapers like crazy.. no wonder I was tired. At one point I had D, broken rib from bronchitis which turned into pneumonia and shingles all at the same time. Once on entocort.. I was used to be tired:) Then testing showed I was a tad short on B12 so I have been getting those shots a couple of times a month and that seems to help.

Any time I wonder about anything I do check with my family doctor who has been most supportive through the last 8 years. Although my GI is the one who put me on entocort about 5 years ago.. my family doc has seen me almost twice as long so is more familiar with my whole body not just my guts...

This group has tons more information in one place about MC/CC than just about any doctor you can find.. HOWEVER, when in doubt I ask the doctor I trust most for suggestions.
grannyh

PS.. one exception ... if you have LC and the doctor says you need fiber... ignore that piece of advice...:)

Franklight · Post by **Franklight** » Tue Nov 23, 2010 9:28 am

Dear All,

Thanks for the info and good wishes.

Before I started with my symptoms I had been eating mainly raw food for about 8 months (and had been feeling GREAT). Recently I started trying to put more raw food into my diet because it really does make me feel better. But I'm wondering if this onset of tiredness may be related to my increased raw food intake.

I guess that's where the basis of my main question comes from. I seemed to be symptom free with Entocort for months, but then I started having fatigue. Have any of you had flares of symptoms while you were on medication that was working for you?

Thanks for your help.

Have a great day!

Frank

MBombardier · Post by **MBombardier** » Tue Nov 23, 2010 12:36 pm

I have been reading recently about vegans who have discovered that they are deficient in nutrients, specifically B-12. You may want to ask your doctor to do some blood work so if that is a factor in your fatigue it can be remedied. Welcome to the forum!

Post by **tex** » Tue Nov 23, 2010 12:59 pm

Hi Frank,

I responded to your other post:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12662

Tex

Franklight · Post by **Franklight** » Wed Nov 24, 2010 11:02 am

Dear Friends,

Thank you ALL for the very useful information you've provided to me directly and to others that have helped me learn more about this condition. The service you provide is a real gift of love. Thank you for that.

I will be seeing my new gastro doctor the first week or so of December, so I will now be a bit more educated so I can ask her the questions I need to. I'm switching from my diagnosing doctor because when I asked him about changes in diet he said "Don't worry about diet, there's nothing you would need to change with that." YIKES!!! Even from brief internet searches I knew better than that.

Anyway, I've gotten off Prevacid, Aleve, and am weaning myself off of caffeine. I'll also be watching my soy intake and working to eliminate that. I've been on a strong B suppliement that provides 1,660% of the daily requirement, but I'll ask the doc to check that.

I've been lacto-ovo veggie for well over 20 years and only vegan for a year and a half. I don't think protein is a problem, but I"ll keep an eye out for that.

Thank you again for this wonderful service of maintaining and leading this support group.

Much love and gratitude,
Frank

Kari · Post by **Kari** » Wed Nov 24, 2010 1:15 pm

Hi Frank and WELCOME to this very supportive internet family. I noticed in your last post that you're weaning off caffeine. Well, that could certainly result in a feeling of fatigue. However, it seems like you're doing it slowly and methodically, which I'm sure will minimize the impact. Just a thought .......

Best of luck to you in your battle with CC.

Love,
Kari

Bifcus16 · Post by **Bifcus16** » Wed Nov 24, 2010 8:44 pm

Hi Frank,

Welcome.

Not sure if you are giving up caffeine due to the CC or for other reasons? We haven't heard many stories where caffeine has been a cause of D for people. Generally if you could take caffeine before you got MC, then you can take it after. If you had trouble before, you will still have trouble.

As you have probably already read on this forum, a lot of us find raw foods a problem while we are healing. I wonder if your system is able to process them well enough at this stage, even with the Entocort? It might be worth going for more cooked food for a while to see if that makes a difference. It is coming into the cooler months where you are, so that might have an upside.

Lyn

Linda in BC · Post by **Linda in BC** » Wed Nov 24, 2010 9:32 pm

Hi Frank and Welcome to our PP Family:

I just started taking Entocort a month and a half ago, and I haven't noticed feeling any more tired since then, probably less so, if anything.

I wondering how is your body handling the increase in raw foods while on Entocort? Are you able to digest it and get the nutrients from it?

Linda

Franklight · Post by **Franklight** » Thu Nov 25, 2010 2:10 pm

Dear All,

I think I've traced my problem.

First, I hadn't realized that MC people had flares! duhh! I figured they either were symptom free or had the symptoms. The Entocort has been great, I had no tiredness for the first 2 or so months. I never had my full energy back, but I was much better than before Entocort.

I get to travel a good amount and had to have my Typhoid shot renewed. I had a day of being kinda under the weather, but this extreme fatigue started (as best I can recall) after I had the shot. My wife who had Lupus had a few days or more of reaction to the shot, so I should have put two and two together. So I think the typhoid shot threw me into a flare.

Now that I've stopped my prevacid and my Aleve and am eating well, I think I'll start feeling stronger. Today is actually a pretty good day (though I did sleep for 11 hours last night!) and I think I'm going to be doing a bit better each day.

What a wonderful resouce and support this site is. It is a comfort to have all of you there for me (and for others).

Have a wondeful day and know that I am thankful for all of you,
Frank

MaggieRedwings · Post by **MaggieRedwings** » Tue Nov 30, 2010 2:13 pm

Hi Frank & Welcome to the group.

Just wanted to let you know that I did have fatigue on Entocort but also had other complication from it. One of a very few who did. Also, I was a vegan for over 35 years and since being diagnosed with CC had to finally bite the bullet and go back to fish and some meat. I was not getting enough protein since I am also soy intolerant and other intolerants. :)

Wish you well and I am sure you are right that the typhoid shot might have had some impact on your energy level.

Maggie

klhale · Post by **klhale** » Tue Nov 30, 2010 7:48 pm

you are probably very low in B12, have the doc check it and if so, get on it.

I give myself a B12 shot once a month, but initially, I was so low, I had to have one once a week for 6 weeks.

Feel better,
karen