Entocort and side effects.. frustrated

[summerday]

Hey everyone,

I am new to the forum but have been reading for the past month or so. I am female, 26 and was diagnosed with CD in 2007, and have had sections of the small and large intestine removed. I have been on Prednisone off and on over the last 2 years. Other drugs I've tried are Pentasa, Imuran, and Flagyl. (I think thats it? I can't remember my brain isn't functioning....which leads me to my question) I'm not going to go into detail about my journey just yet, but it has been unpleasant. (like most of you)

Anyway, for about a month now I've gone unmedicated. My dr wanted me to be off Pred for about that long before transitioning to Entocort. My BM's have been pure liquid, and several (ok multiple) times a day. I've also had some pretty debilitating tummy pain. This unfortunately, is pretty normal for me unless I'm on the Pred. (Grr)

I started the Entocort on Saturday (almost a week ago now) 9mg a day. I am supposed to be on it for 2 months at that dose, then start staggering down. Well wouldn't you know it, my tummy has felt great for 2 straight days, and my BM's are becoming less frequent, although still liquid. But this is the first signs of it working even though it's pretty early. There is a but though....

I am experiencing mad side effects. I have a rapid heart beat (and I have an enlarged heart to begin with which was under control with meds). I am slightly dizzy and lightheaded for about an hour after taking them. I'm sooooo snappy and edgy and sad, which I know is from the meds. I'm shakey and weak feeling. I know side effects are rare, and I have several calls into my Dr's office to no avail... perhaps the secretary is away sick or something...

Anyway I'm thinking of stopping the drug until I hear back from them as it's very concerning. I guess I'm just looking for somewhere to vent my unbelieveable frustration that the first thing besides Pred that works is doing this to me... and I'm wondering if anyone has experienced these side effects before? Thanks for listening everyone.

 

[jsy106]

Hi Summerday

I'm also new to the forum but when I read your post I felt I had to reply. I am currently on Entocort and scared myself stupid when I read the side effects!

I don't want to freak you out but I found this website useful.

http://www.netdoctor.co.uk/medicines/100000929.html

Hope it helps.

I also experience dizzy spells after taking them but I'm glad I'm on them because I'm much better. Don't stop taking it as it's dangerous to do so and just remember, like I do when I'm having a moment, that it's just the drug, not you!

*Hugs*

 

[tiloah]

Hi there, welcome to the forum. I am so sorry you are experiencing these side effects. Steroids can certainly be nasty.

I can't give you any advice other than keep trying to reach your doctor. If you can't reach your GI maybe try giving your GP a ring? They sound serious enough to me to warrant talking to a doctor about them (especially with your other health concerns).

If nothing else some insurance plans have a nurse line you can call, or maybe try going to a walk in clinic? Good luck.

 

[summerday]

Thank you for the replies. Against advice I stopped taking it on Saturday, and feel 100 percent better, side-effect wise. My tummy did start to hurt again immediately though The earliest my dr can see me (I finally got through this morning, sigh..) is this Firday morning, so I guess I'll tough it out until then.

 

[tiloah]

While it is against medical advice, maybe it is for the best. I hope you and your doc can figure something out that helps but doesn't put you through the wringer. They say the cure can be worse than the disease eh. Good luck, I'll be thinking of you.

 

[Regular Joe]

Hi.

I was taking Entocort for over a year. The GI said often times it's used to maintain remission. When I first started Entocort, I had side effects like you mentioned. But the relief from diarrhea, fatigue, and everything else was worth the "maddening" side effects. For me, they went away after about 3 weeks.

I became slightly dependent on Entocort, I was on it for near 18 months. But I tapered off pretty painlessly - it's been about two weeks. I was able to taper off using Pentasa. Before Pentasa, I was using sulfasalazine, and I wasn't able to taper without getting flare-up symptoms. So now I'm steroid free, and all seems pretty well.

But "pretty well" means I don't pay much attention to diarrhea unless it goes beyond 2-3 days, and then it depends on how many times I go in a day. Anything 4 times or less a day, and I'd call it a good day. I also found that taking metamucil once or twice a day changes my "output" from watery to "loose but formed".

The initial side effects I had from prednisone when I did a short course were the same as they were for Entocort, except with pred they were more pronounced. Have you thought about living through the side effects for a couple weeks? Might be worth a try.

Good luck

 

[summerday]

Hi Regular Joe. I do have a feeling my Dr. is going to recommend my toughing it out for a few weeks... and I probably will if I have to. I'd give almost anything to get this under control. The only thing is my fear of damaging my heart further. I need to hear from him it will be ok before I try again. If I have to choose between my heart and my bowels... well I will have to try a different medication I guess. Aaaarrrgh.

 

[summerday]

Hi again,

I just thought I'd post an update. I saw my Gastro doc last Friday. His receptionist accused me of lying about phoning there and leaving urgent messages but that's a whole other story. Wow. Turns out I could have seen him 4 days earlier then she got me in, so I'm not impressed with that.. Anyway..

He said I was smart to stop taking the Entocort and has put me back on the dreaded pred, and Imuran again. I've been on both for a week now, and although the pain has subsided slightly, the D has not on the plus side, he recommended I stay home from work this week so I"ve had some nice time to sleep and relax. Now to add insult to injury, or kick me when I'm already down, I discovered a Hemmrhoid last night its external and sore and quite itchy and even more painful to go to the bathroom. Sorry for the TMI but I really need to vent. Does it ever end???!!?? I basically spent all last night crying over the silly thing but Im at my wits end and it feels like I'll never feel 100 percent well anymore. Thanks again for listening, I hope to stick around its great to have a forum like this. Any reccs for the roid? I've read about the baths and Prep H and I've been doing both today but I'll take any other advice.

 

[tiloah]

Thanks for the update. That receptionist sounds like a winner! Does your doc have a medical assistant? Maybe try to be put through to the MA in the future for scheduling (that's how I get in a lot sooner at my GI's).

I can totally relate to what you're feeling. I've never had a hemorrhoid but I've heard good things about Calmoseptine for butt irritation in general. I hope you start feeling better soon. I'm glad to hear the Pred and Imuran have you in less pain.

Is Imuran the only maintenance med you have been on? I feel like your symptoms and side effects would warrant long term treament, but I am not a GI.

 

[summerday]

Yes I have been on Pentasa, Flagyl or Metronidazol, and had a stint on Imuran once before. I was not on the Imuran long enough to tell if it had worked but phyched myself up so much at the thought of the side effects I chickened out and stopped taking it. Stupid I know. The others have not been effective for me. I was really excited about Entocort and pretty bummed its not for me. I know its a steroid but I had high hopes. So here's hoping the pred helps me get through the waiting period for the Imuran to kick in.. Though it seems to be slower working this time then in the past. My dr basically said I am running out of options now. I guess if it doesn't work and he doesn't want to try anything else its time for a second opinion. And no, he does not have a clinic assistant, just his lovely secretary who I can't wait to see again in 2 weeks, NOT. Thanks for the reply.. I'm so down.

 

[tiloah]

What on earth!? You are not even close to running out of options. What a negative thing to say.

I say go for the second opinion. Hopefully you'll find a doc who will treat you more respectfully and take your disease more seriously (they're hard to find, but they're out there). Your current doc sounds... not so great.

Hang in there. I know you will figure something out and get to feeling better. Good luck.

 

[chrisnsteph1022]

You haven't even tried biologics yet! You have lots of options (and with a severe case, I'd push for a biologic).

 

[summerday]

That's exactly what I'm thinking. If this Imuran doesn't work those biologics will be what I push for. I am living in fear daily that I will end up right back to where it all began with another surgery. Which stressing about that of course doesn't help the situation... oye vey! :ybatty: