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Side effects and requirements of the medications you take for your Crohn's....

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Crohn's Disease
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Posted 8/29/2007 9:20 PM (GMT -6)
Back into the pool with a whole new round of medications, this got me to thinking about a few things. First, let me being by stating what I'm taking right now...

40mg of Prednisone once a day to try and control the flare.

50mg of Imuran once a day to premedicate for Remicade

30mg of Prevacid once a day to repair damage done when vomiting.

300mg of Trimethobenzamide every 6 hours to control the vomiting.

Hydrocodone 7.5/500 x2 every 4 hours to control the pain of the current flare.

And soon to be Remicade.

Now, I understand that I was born with a chronic illness, and as much as that sucks ass, I hate fighting the side effects and requirements of my medications. tongue Allow me to explain...

Over the last two weeks, I began to realize that I can't take the Prednisone in the morning, because I have the flushing and a few other issues. The moon face has already started to move in. Imuran drops the immune system, and thanks to prior experience, I love getting everything that anyone around me has... mad The Prevacid is rather mute, as it doesn't appear to make me feel any worse, but now let's move into the two biggest culprits. Trimethobenzamide and the codeine. The Trimethobenzamide makes me drowsy. Fine. Understandable. I don't vomit. Nifty. The codeine, controls the pain WHILE making me drowsy. I don't take the codeine often unless things are bad, but when the Trimethobenzamide and codeine meet, I go to sleep. I don't mean, "Oh, i feel a little sleepy. I need to take a nap or an energy drink..." no... I mean... "Hey let me type this... *snore*... oh god, I dozed off again..." I have dozed off in mid sentence talking to someone. So I have to stagger them in order to make a small window of sleepiness...

And now, reading up on the possibilities of what Remicade may do to me... GAH.

Am I the only one who thinks that side effects are one of the most god awful things ever? I mean seriously. It's not bad enough that we get stuck on one drug that does one thing. No, we get stuck on a whole array of drugs with a whole array of side effects. Regardless of any of our treatments, we all get stuck on a bunch of different things and hope for the best. And yes, this is something that occurs with chronic illnesses with no real cure, but it sucks for us the patients...

Just a rant, feel free to add in about what you think about your current medications. I'm sure I'm taking a considerable smaller amount than some, but feel free to let loose about any of your meds.

And I didn't even get started on those good ole' blood tests that come along side the Imuran. I hate needles! :-)

Posted 8/30/2007 3:18 AM (GMT -6)
jmattick, have you discussed the problems you're having with your doctors? I'm asking because I know that there are medications other than trimethobenzamide that can be used to control nausea. I know that dexamethasone - a strong form of steroid - can be used to control nausea in cancer patients. It's possible (and I only say possible) that with a change in meds you may be able to get your disease under control *and* have an easier time with side-effects.

Hope you get some relief soon,

I.
Posted 8/30/2007 3:59 AM (GMT -6)
Hi I know the pred. has enough side effects for me did not sleep well at 40mgs. one good thing about taking it though is it gets lowered. How long have you been vomiting? Hopefully you will build up some resistance to the drowiness .So when are you starting the Rem. ? I don't seem to have many side effects with that so hope you don't either.Best Wishes and I hope you at least enjoy some of those naps. lol gail
Posted 8/30/2007 7:10 AM (GMT -6)
I can definetly relate to what you are saying. I finally got in to see and Rheumy got diagnosed with Inflammatory Arthritis secondary to Crohns. So I am supposed to start Methotrexate shots tomorrow and while you on the Methotrexate you have to take 1 mg of Folic Acid. Started the Folic Acid last Friday and had to discontinue it Tuesday night as the freaking Folic Acid has torn up my guts. You can't win for losing.
Posted 8/30/2007 10:15 PM (GMT -6)
I am so sorry! I hate moon face more than anything and refuse to take prednizone. I feel like I'm trading one problem for five and it's just not a good long term plan for treatment for me. I will say Remicade did wonders and I had no side-effects! I know it works differently for everyone but I hope you get the same results. I did great for years but have now started to build resistance to it as I've been using it for 8 years so I tried Humira but it didn't work for me. I started Methotrexate 4 weeks ago and it's working but makes me sick to my stomach and the folic acid is giving me some issues too! I guess you really can't win but we'll keep trying. Good luck!
Posted 8/30/2007 10:20 PM (GMT -6)
Augh, I hate Prednisone. I was on 50mg for 4 months trying to get mine under control and it did nothing for my disease (though worked when I was on the IV strength in the hospital). I finally moved to Humira and tapered off the Pred and I have no side effects with Humira.

I never got moonface, that I could notice, but I ate the entire contents of hte kitchen, was up all night, and was a jittery mess. I got SO much cleaning done, and worked like a maniac at work, but it wasn't me. You know? I jabbered on like an idiot and ran around hte office like the energizer bunny but that's just not me... my collegues found it amusing at first but after awhile really wished Aimee would return. I hated feeling like someone else, and not sleeping.

I am also on Imuran but honestly, I only recently started to take it religiously so I don't know if I will react at all to it.
Posted 8/31/2007 8:29 PM (GMT -6)

I was on 75mg 6mp for 4 weeks, and still was suffering paining bloating etc. GI doc put me on 40mg predisone daily and put 6mp up to 100mg daily. I have been soooooooo tired. I am a night owl usually, but having been going to bed at 8pm and sleeping til 7.30. I feel great in the mornings, but by 3.30 I feel I need to lay down.Predisione usually give me abit kick up the bum and gets me going, but this is the first time i have been taking with 6mp.

I think I need to go and have a lay down now

Posted 9/1/2007 9:45 PM (GMT -6)
I am currently on nothing for Crohns, just synthroid and tegretol.
And I feel just as bad as I did when I was on immuran...Predisone always made me feel physically better but mentally and what it is was doing to my body, after 7 years...... I CANNOT do that again.
I still have a terrible time sleeping also because of years of predisone. and stress doesn't help either...I usually sleep in 2-3 hour intervals, .Sometimes I sleep 4 hours a night for 7-8nights then I just collapse and sleep for 10 hours..they want me to take xanax just .05 mg, and when I am really unable to sleep at all i may take it, but it makes me feel like crap even more the next day.

HUMIRA WORKED, I loved it, made me feel the best I had felt in years.
Posted 9/11/2007 9:00 AM (GMT -6)
I just came across this post. I know how you feel about the side effects. When I mentioned that the 6-mp and the prednisone were making me wacky to my doctor and I really didn't like it at all. He said "Well, all medications have side-effects, even aspirin. You are just going to have to live with it." I should have made him understand how bad it really was because 3 weeks later I was in the hospital, in isolation with Pancytopenia (bone-marrow failure) due to the 6MP. I think because he pooh-poohed my side-effects that I just tried "to live with them" and it got me in a whole lot of trouble.

Listen to your body. If something is not right make sure you bring it up to your doctor. Let him judge if it is important.

By the way, I have a new doctor now.
Posted 9/11/2007 9:27 AM (GMT -6)
I am currently on 40mg a day Prednisone. I feel it is helping me but the major side effect is jittery insomnia. I have to take a temazepam every night to sleep, which does the trick pretty well.
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