Catch-22 with Entocort

Beth · Post by **Beth** » Wed Jan 23, 2013 5:01 pm

Hi everyone,

I've been having extreme insomnia for the past three nights, getting about 2-3 hours of sleep, that I believe is connected to an entocort taper. I also have been getting very bad headaches, probably from withdrawal.

Here's the situation: I started taking 9 mg of entocort in early December, and gradually tapered down to 3 mg/day. I was feeling quite constipated, however, and I knew that other people had had success with taking this drug every other or every third day. I hadn't taken the meds for probably two days when the insomnia started on Sunday night and has been continuing. I have a 3 1/2 month old baby girl, so the lack of sleep is affecting me significantly.

Additionally, I was just diagnosed with candida, which means I need to follow a low-carb diet. So I'm in a difficult position now of trying to figure out whether I should go back on a higher level of the steroid I've been on for the colitis to see if I can get some sleep but face insomnia down the road when I taper down later. (I seem to need only very small amounts in order not to be constipated and the low levels of the steroid seem to be causing intense insomnia.) On the other hand, if I stop taking the medication, I will go back into a flare where I cannot eat any kind of vegetable because the fiber makes me so bloated and in so much pain. The only thing that works when I'm in a flare is to eat a very strict chicken and potato diet, which is clearly not conducive to treating candida.

Do I stop taking the medication altogether and regain the ability to sleep once the medication is entirely out of my system but also go back into a flare? Or do I go back on a higher level of steroid and manage the colitis and therefore manage the candida but risk further insomnia and additional problems because of the immune suppression? What have others done? Have you experienced insomnia with entocort? I feel like I'm going out of my mind from this insomnia!

Thanks, all.
Elizabeth

Beth · Post by **Beth** » Wed Jan 23, 2013 5:17 pm

P.S. I can't take any sleep meds because I developed a tolerance to sleep meds a few years ago that took me 2 years to recover from. And benadryl gives me restless legs and causes jitteriness.

Leah · Post by **Leah** » Wed Jan 23, 2013 6:55 pm

Hi Beth. I haven't heard of the insomnia thing with Entocort. I didn't have any problems with weaning off of it, but I did eventually get C and very uncomfortable at the end of my 6 months. You haven't been on it very long, so I don't see a problem with staying on it, but won't going back up to a higher dose cause C and pain? Are you sure your insomnia is coming from lowering your dose?

I wish I had a great answer for you, but maybe the insomnia will stop if you stay at this level for a while. So sorry to hear that this is happening to you. Hope you get some sleep soon

Leah

Fish2575 · Post by **Fish2575** » Thu Jan 24, 2013 1:05 am

Hi Elizabeth,

I think Leah is right to question the Entocort as the cause, considering that you have tapered down. Usually a higher dose would cause more insomnia. Are you taking it early in the morning?

I am so sorry for the lack of sleep! That is just cruel when you already have a newborn! I would suggest mentioning the sleeplessness to the OB doc or midwife if you have one. I had crazy hormone fluctuations for about six months after each of my kids were born and if your thyroid has changed it could be keeping you up at night.

That being said, if it is the entocort keeping you up at night on a dose of 3mg, I would not increase it. That is as long as it is doing the job of keeping the inflammation in check. I would also think it wouldn't be wise to stop it if you assume you are not ready and it would put you into a flare.

Are you on any meds for the yeast? And I am quite curious how you got a diagnosis of Candida. I can't seem to get anyone to test me for it, yet I know I have yeast overgrowth.

I hope that is helpful. Are you tired at all during the day? Maybe someone else can comment if they have had this side effect. Good job tapering so quickly though. I have been on 9 mg of Entocort for over a year with no sign of healing

Hoping for some sleep for you tonight! Warm camomille tea? Keep us posted. Susie

Beth · Post by **Beth** » Thu Jan 24, 2013 9:42 am

I ended up taking a full dose of 9 mg last night to see if the lowered dose was the cause of the insomnia, and sure enough I slept beautifully. This is just the way my body tends to respond to tapers on any kind of meds, I'm noticing. It's happened with two others, one an SSRI and one a sleeping pill. The lower I got in the dosage, the more extreme the side effects. So, my plan is to stay on 3 mg/day and just to take magnesium to help with the constipation. While I'm nursing, I really can't afford to go back to a chicken and potato diet, nor of course can I treat the candida. At least my sanity is going to be restored now that I can sleep again!

Fish, my doctor ordered a candida antibodies test for C. Alibcans IgG, IgA and IgM. Hope that helps!

Thanks for the encouragement.

Fish2575 · Post by **Fish2575** » Thu Jan 24, 2013 10:18 am

Wow! That is really odd, but I am glad you were able to precisely identify it! And very glad you were able to sleep!

I did Enterolab testing for IgA antibodies to yeast, and they came back positive, so I know I have had a problem. I wish there was a test that actually measured the amount of yeast in stool to identify overgrowth. It is hard to know if it is still a problem!

Glad you are doing better. You probably need the magnesium anyway!
Susie

Leah · Post by **Leah** » Thu Jan 24, 2013 11:33 am

Susie, if you have not had any improvement with Entocort, maybe you should not be on it. That's a long time to be taking 9 mg. Have you tried the Pepto 3 month protocol? Just a suggestion.

Leah

Glad you are getting some sleep Beth!

Fish2575 · Post by **Fish2575** » Thu Jan 24, 2013 12:09 pm

I know!

I actually bought some pepto at the store the other day, but its main ingredient is the same as Lialda, and I had a bad reaction to Lialda-kidney stuff!

I honestly don't think there is any way I am ingesting forbidden food. I have figured out my safe zone, and am pretty much just eating 4 foods. Doc is really pushing for Imuran, but I am going to try everything else first! Started Flagyl today, so we will see!

Beth · Post by **Beth** » Thu Jan 24, 2013 12:30 pm

Susie - see if you can find a doctor who practices functional medicine in your area. They might be able to help you and can prescribe the tests you need. For me, my doctor thinks that the candida is making my food sensitivities worse. That may be happening for you, too. Good luck!

Post by **tex** » Thu Jan 24, 2013 1:00 pm

Elizabeth wrote:For me, my doctor thinks that the candida is making my food sensitivities worse. That may be happening for you, too.

That's very true, because the Candida roots penetrate the tight junctions in the intestinal lining, and force them to remain open at all times — the result is chronic leaky gut.

Tex

Fish2575 · Post by **Fish2575** » Thu Jan 24, 2013 1:10 pm

I was on Diflucan for two months, and have been grain and sugar free since then, so I think that is helping! I have an appointment to see a functional medicine doc in April! Thanks for the input!

Tex, this is very much a side note....I know you have tried nut butters unsuccessfully many times. I am curious if you have had any luck with sunflower seed butter? I want some sort of butter and am wondering if anyone has had success with the seeds when they fail with nuts!

Post by **tex** » Thu Jan 24, 2013 1:35 pm

I've never tried sunflower seed butter. To me, sunflower seeds have a very unpleasant odor. Maybe that's because wild sunflowers are a major weed pest on farmland, and after fighting them for decades, they've left a psychological bad taste in my mouth.

Tex

Fish2575 · Post by **Fish2575** » Thu Jan 24, 2013 2:34 pm

We are all so very different aren't we? I could gulp down a whole jar, though that may be catastrophic!

Leah · Post by **Leah** » Thu Jan 24, 2013 8:40 pm

i have had sunflower seed butter and seemed to react to it, but I have no problem with almond butter. When I can I go to a store that has the machine that grinds roasted almond right there, I do that. Yum!

Leah

Fish2575 · Post by **Fish2575** » Thu Jan 24, 2013 9:54 pm

I can't do any nuts. They make my throat swell up and my joints ache. I think it is actually an esophagitis, but regardless they are a no go! I tried some sunflower seed butter today. It may be something I can have a tiny bit of when I am doing okay!

Thanks for the heads up Leah, it is always nice to have another perspective!