More entocort side effects questions

Andi · Post by **Andi** » Thu Jan 13, 2011 4:41 pm

Hi. I have been on entocort for about a month now, after having the worst flare in my years of MC. While the MC symptoms feel much better, I have been having some side effects that I can only attribute to entocort, since that is the only thing that has changed.
I posted last week that I was having a puffy face and neck, and one other member said he had the same problems. Now I am finding that I am having trouble sleeping, and that If feel anxious and really depressed. I have always been a happy person, had a sense of peace even when sick with MC. The sadness I am feeling is really intense and has made it hard for me to enjoy my daily activites.
I dont want to go on an anti-depresent, I would rather get off the entocort.
Has anyone else had problems with feeling anxious, depressed, and unable to sleep?
My doctor prescribed a few weeks worth of Ativan (sp?), but I also dont want to get hooked on using that. I does help sleep and the anxiousness, but I have been wary of taking it, so just take one every couple of days before bed.
Just curious what side effects people who have been on entocort have had. I also am happy to hear from people who have had no side effects.
Thanks all!

Joefnh · Post by **Joefnh** » Thu Jan 13, 2011 5:07 pm

Hi Andi. for me the symptoms for Entocort were as follows:

-Initially some dizziness and just felt unsteady this faded mostly after about 3 weeks

-Puffy face / neck started after about 2 months and finally went down after stopping the Entocort for about 6 weeks

-Insomnia was a modest problem about 60% of the time

-Feelings of inadequacy and self doubt were an issue most of the time. Overall I had issues with self confidence and felt mentally 'jittery' almost hyper. This was not normal for me and faded within 2 weeks after stopping it. I did not realize how much this was affecting me until about a week after stopping it.

I guess in summary besides the puffy face and neck, the symptoms tended to be neurological in nature.

All in all the med was a little problematic, but it was worth putting up with the side effects to get the D under control.

I hope you can find a way to deal with the Entocort or find another med that can help with MC.

--Joe

explosive · Post by **explosive** » Thu Jan 13, 2011 5:13 pm

Hi, I had some side effects when on Entocort the last time and am getting ready to be taking it again! I had a puffy neck and face and really bad headaches. My heart raced alot but I have Tachycardia anyway and it is ususally controlled with medicince. I wonder if the Entocort was reacting with my beta blocker. My family doctor put me on Ativan back in November and it does help with the panic attacks and anxiousness. I am on other medications for depression too though. I have trouble with my oxygen level and I had fallen and strained a muscle during the time I was taking the Entocort before. I was Rx a mild muscle relaxer - zanaflex - and when I took one that evening my oxygen level really bottomed out and I almost had to go the the er. My cousin whom I share an apartment with watched me for hours and kept waking me up to make sure I was still alert enough. Have you had any reaction with other medication while on Entocort. I am a little nervous of taking the Ativan and the Entocort at the same time.

Thanks

Andi · Post by **Andi** » Thu Jan 13, 2011 6:10 pm

Joe,
Thanks for the entire list of symptoms, it helps to know. Like you, I am not used to feeling anxious and sad, I hate this feeling.

explosive,
I think taking the ativan just before sleep is ok, my doctor said it was fine with the entocort. I never had trouble sleeping till entocort and the ativan does help when I take it. I am just wary of taking it more than once every couple of days.
I dont take any other mediction other than thyroid pills and those dont give me any reaction with the entocort.

Martha · Post by **Martha** » Thu Jan 13, 2011 6:19 pm

Andi,

I didn't have any side effects from Entocort that I was aware of.

I'm sorry you're having a hard time with it.

Andi · Post by **Andi** » Thu Jan 13, 2011 6:49 pm

Thanks Martha,
Hearing that people dont have side effects helps me as well. I am hoping that maybe after my body is used to the medicine the side effects will go away.

Gloria · Post by **Gloria** » Thu Jan 13, 2011 7:13 pm

Andi,

I don't have any side effects from Entocort, other than I bruise easily - but I've always bruised easily.

I wake up frequently during the night, but I've always had sleep problems. Lately I've been able to go back to sleep, but sometimes I lay awake.

I haven't noticed any depression or effects on my mental state. I wrote earlier that I haven't gotten a puffy face from using it.

It's interesting how medications affect each of us differently. Perhaps you could try lowering the dosage and see if you still maintain remission.

Gloria

klhale · Post by **klhale** » Thu Jan 13, 2011 7:27 pm

Hi,

I am ok if I take one Entocort, but if I take 2-3 a day, I feel very jittery and nervous with insomnia. It's fine with me, as it is the best medicine to treat MC.
Most of the time I just have to take one Entocort.

Andi · Post by **Andi** » Thu Jan 13, 2011 7:43 pm

Gloria and klhale,
I am taking 3 right now, will move to 2, and then 1. 1 will hopefully make me less anxious and sad. I just started it a month ago so I need at least a few more weeks on 3 a day.

harvest_table · Post by **harvest_table** » Thu Jan 13, 2011 8:57 pm

Hi Andi,

I took Entocort for about 6 months and aside from bruising that's been mentioned already had no serious problems with it at all.

If you think the medication is causing you anxiety issues you might want to consider stopping it. How long were you planning to take it?

Sorry your having a rough time.....hang it there. Great support group here.

Love,

Joanna

MaggieRedwings · Post by **MaggieRedwings** » Mon Jan 17, 2011 7:08 am

HI Andi,

I would say that my symptoms were similar to Joe's without the puffiness of neck and face. I also had racing heart but then I have an existent heart condition.

Maggie

ant · Post by **ant** » Mon Jan 17, 2011 7:48 am

Dear Andy

The only possible side affects I can see is (possibly) some increased thinning of the skin. But it was already thinning before I started the med and even before MC presented with D. So I do not know if I can attribute that to entocort.

Best wishes, Ant

Post by **tex** » Mon Jan 17, 2011 10:39 am

Ant,

Thinning of the skin is a known side effect of corticosteroids, so you are probably correct with your suspicions.

Tex

ant · Post by **ant** » Mon Jan 17, 2011 11:32 am

Thanks for the info Tex,

If it causes thinning of the skin, might it cause thinning of the GI epithelial layer......thus leaky gut??

It is all about trade- offs I suppose.

I wonder if all immune suppressants thin the skin (and possibly epithelial layer) ?

Bast ant

:ant5:

Post by **tex** » Mon Jan 17, 2011 12:25 pm

Ant,

Most research concerning skin thinning effects are connected with studies of topical treatments with corticosteroids. It is known, however that oral corticosteroid treatments also cause thinning of the skin. Therefore, I am going to make a WAEG that oral corticosteroids might possibly cause thinning of the epithelial layer of the gut, but I doubt that this would have a significant effect on any tendency toward altered behavior of the tight junctions, (that might result in the leaky gut syndrome). Remember that the composition of the epithelia of the intestines, (in fact, most of the GI tract), is known as a simple epithelia, because it is only one cell thick. The cells are columnar in shape, however, (meaning that they are taller than they are wide).

On the other hand, the skin, (and body openings to the skin), is composed of what is known as stratified epithelia, meaning that it is composed of mutiple layers of cells. That structural difference allows for different mechanisms of action, which might possibly have a bearing on the relative risk of thinning, for the various types of epithelia.

I'm not aware that immune system suppressants, in general, have any effect on skin thinning, (except for steroid atrophy, of course - which only applies to steroid-type immune system suppressants).

Tex