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Crohn's Disease
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Posted 9/4/2011 2:11 AM (GMT 0)
I was diagnosed with Crohn's in May and recently I have been having terrible abdominal pain and joint pain in my knees  as well as terrible headaches.  My GI gave me some meds, but they don't seem to be working.  Any thoughts on how I can make the pain go away?

I have been on 3 rounds of prednisone and now I am on Imuran and I am not feeling better.  All I want is to feel better.  My GI has been pushing Remicade, but I am a little nervous about taking it.  I have read that a lot of people have had a lot of success, but how much does it affect your imune system?  I work in an environment where I deal with a lot of people and I worry about having a weakened imune system. 

Any suggestions and thoughts are welcome.....I just want to feel better. 

Posted 9/4/2011 2:16 AM (GMT 0)
I was only on Imuran for a total of 20ish days and had a pretty rough time with it. I developed acute pancreatitis and I also had terrible joint pain in my knees and pain in my neck as well... it made it hard to walk. Stopping the meds cleared that up for me, and I feel great on just Prednisone. My GI is also suggesting Remicade, so I'm in your shoes with being nervous about it.

It could be the Imuran, it was in my case. But when things don't work I'd call your Dr. again.
Posted 9/4/2011 2:28 AM (GMT 0)
Thanks for the info. I have an appointment for next week. I've only been on the Imuran for a month so I was hoping it wasn't that. I am to the point that I would be willing to try the remicade just to feel better. I felt the best when I was on Prednisone, Apriso and Flagyl, but my GI doesn't want me on Prednisone anymore.
Posted 9/4/2011 2:32 AM (GMT 0)
I am currently on remicade and with the weakened immune system I find that I have to make sure I'm washing my hands and using hand sanitizer when necessary but honestly, I've been on it since january and I've only been sick once. We already have over active immune systems so it dampens it down to just below normal, at least that's what I find. It's different for everyone. The only problem I've had with remicade is that during the infusion I get a reaction where my body tries to fight, it gets difficult to breath and I get very hot but they just stop the infusion, load me with benedryl and fluids and reintroduce and I'm fine. I've been feeling great with it :)
I would definitely do your research and figure out if it's worth the risks.
I was unsuccessful with many medications and it took me a little while for this one to start working but I am seeing improvement. I go for my next infusion in a week!
Posted 9/4/2011 2:52 AM (GMT 0)
Heya Funny,

I did Remicade for about three months and it had no side affects for me, but it also didnt help me. The whole thing was painless for me :)

It has helped many on these boards, so from the point of veiw of a guy who took it, I didn't have any prolems with it.

Of course if you were to nottice any changes taking the infusions you would notify the staff, your GI or whoever right away, but I can't say I have read a large amount of remicade horror stories, it either worked for folks or didnt.

I'm actually switching from pred to immuran now, so we are flip sides of the coin on that. I have major problems off pred.

Don't be afraid to try rem, although you may need to worry about wether you want to read a good book or watch two movies, as I believe each infusion is 3 hours long. My hospital supplied portable dvd players with headphones.

I'm surprised the pred didn't help, what dosage was it, how long were you on it, that seems to be the goto "strong" drug for knocking back the pain and inflamation for crohns. Or did it help, you didn't actually say. I just assumed that neither immuran or pred helped you, since you list both. What was the immuran dosage and how lon on it? Curious cause I am headed down the imuran path now.

Thanks

Jon

 

 

Post Edited (Blue Velvyt) : 9/3/2011 8:56:47 PM (GMT-6)

Posted 9/4/2011 11:16 AM (GMT 0)
I was on Remicade for 10 years and had great success. Never got an infection or a flare up. Had to switch because it stopped working.
Posted 9/4/2011 12:20 PM (GMT 0)
Hi FunnyG

It´s like crohngirl sais: Our immunesystem are way to high/aggresiv so when having Remicade ( or other biological/immunosuppresiv meds) it decreases down to a more normal level. I have had Remicade and are now on Humira and I don´t get seriusly sick when the rest of my colleges catch a cold or gets the flue. And if i get it it´ll go over in a day or two.
But ofcourse if the immunesystem is taken down to low, then it can be serious, but I don´t know how often it happens.

Don´t be afraid of trying, it´s no fun feeling like you do today. Good luck!
Posted 9/4/2011 2:17 PM (GMT 0)
I can't tell you what to take. I have only done a few Remicade infusions when it was first available and those were not done to the current protocol, so I can't say whether they helped or not. I can tell you that Imuran will take 3 - 4 months to reach its full potential and you won't know if it is helping you or not until then. Also you can have your blood work sent out to Prometheus Labs to check to see how you are processing it and if it has reached a therapeutic level. Giving up on it after one month, if it isn't giving you any side effects isn't really a fair shot.
Posted 9/4/2011 2:34 PM (GMT 0)
Zanne is correct, Imuran takes 3-4 months before it reaches full efficacy. So please try to be patient a little while longer. You are given blood work to watch for any problems, so like she said you need to give it more time to see if it might work for you. I have not heard of anyone not responding to Pred. Are you sure you were given a high enough dose? Good luck and welcome to the forum by the way. Hugs!
Posted 9/4/2011 9:58 PM (GMT 0)
I have been on tapering doses of pred starting at 40 and going down to 10.  It works until I get to 20 then is stops, but my GI doesn't want me to be on it anymore.  He told me I was getting predy face (very round face) and he was concerned.  He was a little resistant to put me on the Imuran.  I have to get blood work done every month.  I have been getting more headaches and very achy joints since I have been on the Imuran.  I know it will take time to work, but feeling like this is not fun.  He is really pushing the Remicade. 

I have had a promethus test and it came back positive for UC, but the GI said that it is Crohn's since there are ulcers all the way into my small intestine.  I will be swollowing a pill camera sometime soon so they can get a better idea of what is going on.

Thanks for all the info.  This message board is a wonderful support tool.  Thank you!

Posted 9/5/2011 1:51 AM (GMT 0)
The Prometheus test I was talking about is specific to Imuran/6MP. They are the only lab that has the "patent" to do the testing. It will tell if you are in the therapeutic level for the drug, if you are in the toxic level, if your dose needs to be adjusted. It is not the same as the IBD serology test.
Posted 9/5/2011 10:49 PM (GMT 0)
I've been on remicade for over 2 years and have only been sick once with a cold that I recovered easily from. I have 2 kids (1st grade and 10th grade) which means ample opportunities for germs in my house. I never ever share food or drinks with them (or anyone else!) and wash my hands a lot. Clorox wipes are great for doorknobs and other shared surfaces, like computer keyboards. I'm not a fanatic, but I do try to be mindful of protecting myself from germs.

Prior to going on remicade I spent a couple of months in and out of the ER every couple of weeks while waiting for 6mp to kick in, so my GI and I decided it was time to be more aggressive. I went into remission almost instantly and stayed that way for almost 2 years. Back in May we had to increase the frequency of my treatments, but I'm once again doing great.

YMMV, of course, but remicade has been wonderful for me. I hope you can find a treatment that works for you.
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