New on Endocort - Good, Bad, or Side Affects?

[birdlover3]

Just started my first round with Endocort this morning. I can already tell that it's working!!!!! I haven't gone this long in ages without you know what!!!

I'd like to hear if anyone has any of the side effects they talk about ... has it worked for most people? I will try to read up here more on it. Thanks, B

[JenniferS]

Birdlover, congrats, and yay! How wonderful! I'm not sure about the side effects. I have nausea and vertigo fairly frequently, and I know another person on this forum has as well and has attributed that to the medicine. Although I wonder if it could also be low blood sugar. (I do keep ginger chews on hand now--both for the sugar and the stomach soothing they provide.) I haven't experienced the hunger, and in fact, have lost my appetite largely, but I'm not all that physically active at the moment, either, so that could be why.

As to whether it's worked, I'm still trying to figure that out as I seem to have good days and bad days, although overall, I'd say I'm having way more good days on the entercort than I had prior to taking it. But I've also made drastic changes to my diet, so I'm not sure which has led to what. The only thing I really don't like is the cost, although Tex has a link to a pharmacy that sells it waaaaay cheaper than American pharmacies.

[birdlover3]

Fortunately my insurance only charged me $100 for a 30 day supply. It did show the retail cost on the bag though and I about fainted! My insurance calls it a 'specialty drug' so it appears that is all I will be charged. Of course if I have to take it for another month, it will probably cost me another $100 but we'll see. My insurance made big changes this year so we are still new to how this will work.

I am quite jittery. I didn't sleep well last night after taking it that morning. But I did have Diet Coke at noon so maybe that caffeine didn't help. Today I had too much coffee. I'll have to limit myself in the future. I also have a little dizziness, but not much. I noticed yesterday, I bent down to do something and when I got back up, I was twirling in my head ;).

But I am thrilled that I'm seeing results in less than 24 hours. Instead of going to the b-room so much, it was only a few times!!! I'm not making any other changes as I don't know any food intolerances at least yet. That will probably be my next thing. They didn't tell me to take any Pepto or anything with it. Do you?

[tex]

Barb,

Those neurological symptoms that you described are associated with Entocort. Quite a few members have had a similar reaction to it. If the symptoms become worse, you may have to either lower the dosage, or discontinue taking the drug.

Diet drinks are not recommended for anyone who has MC. Diet Coke contains aspertame, and besides all the other health risks attributed to it, most members here develop D from artificial sweeteners. Aspertame may be one of the causes of your symptoms. You may be interested in this information:

I was interested to read a recent study which tested the impact of aspartame on the brains of mice. The mice were subjected each day to one of three dosages of aspartame (0.625, 1.875 or 5.625 mg/kg) or placebo (saline solution) given under the skin for just two weeks. Let’s get these dosages in perspective for a moment: the acceptable daily intake of aspartame in Europe and the US is 40 mg/kg and 50 mg/kg respectively. The fact that this refers to oral dosages and in the study aspartame was given under the skin may have some relevance. However, even so, I think it’s safe to say the dosages used in the study were far from excessive.

What the results of the study showed, however, is that even at a dose of 1.875 mg/kg there was evidence in the mice brains of increased ‘oxidative stress’ (free radical damage) and lowered glucose levels. At the higher aspartame dose the situation was even worse. And at this dose, the mice suffered from memory deficits (as evidence by poorer performance on what is known as the ‘water maze’ test). Here’s the authors’ conclusions:

These findings suggest impaired memory performance and increased brain oxidative stress by repeated aspartame administration. The impaired memory performance is likely to involve increased oxidative stress as well as decreased brain glucose availability.

http://www.drbriffa.com/2013/01/18/even ... f-animals/

Tex

[birdlover3]

Tex,
I did see that these are side affects for the drug so wasn't concerned. Will they stop if I cut back on my coffee? I'll cut back and/or eliminate the aspertame too. If I can't take this drug what else are my options? This was my light at the end of my tunnel!!!

[birdlover3]

The other thing I have noticed is I'm twitching a bit here and there.

I read that it zaps calcium out of your blood stream too and I already have osteoporosis!

[tex]

I doubt that coffee or aspertame has more than a minor effect on the symptoms that you are having. As I mentioned in my response to your PM, the twitches may be connected with an adverse interaction between Entocort and one of the other drugs that you are taking. They could also be associated with a deficiency of calcium and magnesium.

As I explain in the book, the first time you take Entocort, it will not have any effect on your osteoporosis risk, as long as you take it continuously. If you stop taking it, though, and then start taking it again, that will increase the risk of an osteoporosis issue. Unless you take the full dose of Entocort on a long-term basis, though, it shouldn't be a major problem for your bone health. It's the safest corticosteroid available.

Tex

[birdlover3]

That is good news!!!!!