Neurologic Side Effects of Entocort

[Courtney]

Hi all,

Well, it looks like Entocort is a no go for me. I took it in the fall with zero effect (positive or negative), and yesterday I took a 9mg dose in the morning after a week of prednisone. I woke up this morning with the worst dizziness I have ever had, nausea, and vision problems (spots, cloudy, tunnel vision). It was very scary. I had to stay in bed until about 10:30 (I usually get up at 6:30), because I could not lift my head off the pillow. The room was swinging and it felt like my whole body was spinning. My DH came home at lunch to check on me and help me get some food down because I could not feed myself. He went back to work, but came home around 2:30 because I was very scared to be on my own when I could not stand or walk.

I have felt progressively better throughout the day as the Entocort has been wearing off, but I am still a bit dizzy. So much for that. This is more debilitating than the D is. I've lost an entire day. I've looked for experiences with neurologic side effects, as I know others have experienced that, but I haven't been able to find any. Maybe I'm not a very good searcher.

Ah, well. Back to the old food diary. I'm just going to try to keep a very detailed one and eat a very bland diet.

Courtney

[Gloria]

That's pretty scary. I know some here have had dizziness from using Entocort - Maggie comes to mind, but it sounds like you had a pretty bad reaction. I'm sorry it won't work for you. I hope you feel better soon.

Gloria

[barbaranoela]

hi Courtney--I had neurological side effects from entocort ----I had to hold onto the walls as I walked and my speech was affected also--
This was only on it for 2 dayz!!!!
Called GI----and *stop Immediately*--if I hadnt felt *normal* by the next day--he wanted to see me---fortunately I was ok--

A bit scarey is right---for what U went thru!!!

Hope U are feeling better and better--




Barbara

[tex]

Hi Courtney,

That was a pretty severe reaction, to say the least. To be honest, your symptoms sound more like an overdose, than just an adverse reaction with neurologic side effects. Also, they were more severe than what one would normally expect from a typical budesonide overdose, so I have a hunch that a lot of what you experienced today, may have been due to the effect of the residual Prednisone in your system. Apparently, it must be much more persistent than we think it is.

In hindsight, I can see how this might have happened, if you had started a Prednisone treatment immediately after an established budesonide treatment, but theoretically, at least, this shouldn't have happened with taking budesonide after Prednisone, considering the low absorption pharmacokinetics of Entocort EC.

I'm glad that you didn't experience any chest pains, or heartbeat irregularities, as sometimes happens with overdoses. Do you have a way to check your blood pressure, to make sure that it is not "spiking" at times?

I don't want to unnecessarily scare you, but please keep an eye on your signs, and go to the ER immediately, if your blood pressure spikes, as there's always a chance that you may not be out of the woods, yet. Keep in mind that your situation is nowhere near the same as the problem discussed in the following thread, but you might gain some insight from this:

http://www.perskyfarms.com/phpBB2/viewt ... ht=spiking

That said, hopefully, you're past the worst of it, and you will soon return to normal, but it's best to err on the side of caution, due to the fact that we have such varied individual reactions to these meds. Taking dexamethasone, with budesonide already in the system, was the cause of the event discussed in the above thread. Taking budesonide, (in enterically-encapsulated form), following Prednisone, should not have resulted in such a serious reaction. It's possible that you may indeed, be highly sensitive to budesonide, and the residual Prednisone may have exacerbated that sensitivity.

I hope that you'll be feeling much better by tomorrow, if not already.

Tex

[MaggieRedwings]

Morning Courtney,

Well it sounds a lot like the side effects I had on Entocort but more severe. I was able to manage getting around but was a wall hugger like Barbara and it has taken time to get over them. However, it still seems like the dizziness comes and goes and they are saying it might be bi-positional vertigo but can't come to a conclusion so am just dealing with it. I also had the blurred vision on it but that cleared up once I was off it. Please take Tex's advice and keep a close eye on it and if it persists go immediately to the ER.

Hope you are feeling better today.

Love, Maggie

[Courtney]

Hi, all. Thanks for your concern and input.

I am feeling much better today than I did yesterday, but I am still not feeling completely normal. As long as I'm sitting down, I seem to be okay, and I can move around quite a bit. Sudden movements cause some dizziness, but on the whole it seems to be improving. I was able to take a shower last night and felt much better when I went to bed. Some dizziness when I woke up, though. I've just been taking things slowly today.

Unfortunately, I don't have a blood pressure monitor. Usually, I have extremely low blood pressure (~90/60), so maybe that's helpful in this case?

I called my GI's office this morning, and the nurse practitioner said that Entocort would not cause dizziness! I told her I knew of several people who had had dizziness on Entocort. She said not to take anymore (duh!) and that I should call my PCP or go the ER if I was still concerned or it got worse.

Tex, you may be right about sensitivity to budesonide. I tend to be very sensitive to most substances--it does not take a lot for me. This is why I am not a drinker I have been wondering, too, about my body weight in relation to prednisone and entocort. I weigh 115 pounds, and I would think that most dosages are designed for an average 150-pound person. What do you think?

I'm keeping an eye on this and will head for the ER if the symptoms regress to what they were yesterday.

Love,

Courtney

[Gloria]

Courtney,
I also weigh about what you do and I've often wondered about prescription dosages. Doctors seem to think that one size fits all. That said, I haven't found that taking 9 mg. of Entocort affects me any differently than 3 mg., other than to give more immediate relief from my symptoms.

Gloria

[grannyh]

The only good thing about the overdose of steriods for my back (in the link above) was that I didn't need the entocort for three months:)

I still have problems with my blood pressure at times but I do have a pressure monitor and can take my norvasc twice a day when I need to (only take 2.5 mg once a day most of the time).

Spiking blood pressure can be very dangerous and I would never wait as long as I did the first time to get to an emergency room if it happened again. I was just lucky to have happened to ask the pharmacist at CVS about the side effects of steroids and she had me use their monitor there and told me I needed to be in an emergency room immediately. I didn't realize how dangerous the situation was since at the time I didn't even know what my pressure was (didn't have the pressure monitor then).

Hope you get it under control soon.
grannyh

[tex]

Grannyh,

Three months? Wow! That stuff really was persistent, wasn't it.

Tex

[tex]

I have been wondering, too, about my body weight in relation to prednisone and entocort. I weigh 115 pounds, and I would think that most dosages are designed for an average 150-pound person. What do you think?

I think that medical doctors are not as well trained, nor as sophisticated as veterinarians, in some aspects. You can carefully describe your symptoms to your doctor, but unless you have something very common, it's a miracle if they get the diagnosis and treatment right, half the time. Veterinarians, on the other hand, have to figure out what's wrong, without a word from the patient, and yet they seem to have an impressively high diagnostic success rate. When they administer drugs to animals, whether it's in the form of pills, liquids, or an injection, they carefully calculate the dose, based on age and body weight. Even an ordinary farmer or rancher, who finds a sick calf back in the back 40, and deems it necessary to give the animal a shot, in order to save it's life, calculates the dose, based on the animal's weight. And yet if we get a prescription from an MD, body weight never seems to enter into the equation.

In all fairness, though, some drugs have a relatively broad "effective" doseage range. Entocort, for example, has been shown to be safe for most people, at a maximum dose of anywhere from 9 mg per day, up to 18 mg, (and probably beyond). In fact, effectiveness increases significantly, at the 18 mg rate, (the remission rate increases from 60-65% up to 70-75%). Of course, "most" people weigh somewhere within, or reasonably close to the 130 - 180 lb range, (more or less), but what "most" people weigh, is of little concern for someone who weighs significantly less, or more, than that. Regardless of how "flexible" drug doses may be, there is always an optimum dose, based on body weight, so why aren't MDs inclined to use that information, in order to optimize their treatment programs?

I'm glad to see that you seem to be a lot better today.

Love,
Tex

[Rose]

Courtney,

I had the same s/e from the Entocort and that is why I had to stop taking it as well. My new GI wanted me to bring the dose down to 3 mg a day and I still had the same s/e. It was so scary, I almost fell down the stairs I was so dizzy. I was always leaning up against the wall if I had to stand and talk to someone.

I am glad that you are feeling better. It took me a couple of days to feel normal again.

Love,

Rose

[Courtney]

Tex,

Actually, what got me thinking about dosage and body weight was that my dog, Hildy's, medicines and supplements are always given by weight. I started thinking why on earth it would be any different for people!

I'm continuing to feel much better and am almost completely back to normal. I think it is working its way out of my system.

Love,

Courtney

[Courtney]

Hi all,

Just want to let you all know that I am leaving in the morning to visit my family for a week (so I'm very glad I'm feeling better!), so I will not be on much, if at all, in the next week. I will keep an eye on the symptoms, though, and if anything feels weird, I will go to the ER ASAP. With my mom on the case, I don't think I'd have much choice :-)

Have a good week, everyone, and thank you again for your concern.

Love,

Courtney

[tex]

I hope you're able to thoroughly enjoy the visit.

Thanks for the update. Now we won't have to wonder what in the world happened to you, in case you don't get a chance to log on for a while.

Love,
Tex

[Gloria]

Have a great trip!

Gloria