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New UC patient, Pred and Apriso? Will I get better?

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Posted 3/1/2014 3:41 AM (GMT 0)

40 Year old heathly male,  Never had any illness and was always very healthy.  until now........

When everyone told me it was down hill after 40 I didn't imagine this problem.

I was just diagnosed with UC last month 1/2014 after a Colonoscopy.  I had been having diarrhea  for 4 months and thought it was a diet problem or IBS.   My wife finally talked me into seeing the GI doctor.  UC in the entire Colon. 

I was on Prednisone and Liada immediately after my diagnosis and started to have ormal BMs after the first week.  I had forgotten how nice it was to be regular again. Dr. took me off the pred and continued the Liada at week 3. (4 pills in the morning) I started to have bad side effects from the Liada, Chest pains, fast heart rate, and body aches.    I stopped taking it and felt completely better within a few days.  Only problem is that my UC symtoms came back after one week of being off the meds. 

My doctor has me back on pred to induce remission and also started me on Apriso.(8 pills a day .375g, morning and night)  I am hoping I don't have the same side effects as the Liada.  worried confused

Any advise or questions I should ask my doctor?  I am almost sick after reading stuff on the internet!!

Post Edited (TJIndiana) : 2/28/2014 8:56:14 PM (GMT-7)

Posted 3/1/2014 3:55 AM (GMT 0)
The internet is a good...and BAD place!

Reading is good, but too much information can also ruin your day. The best thing to do first is........... R E L A X.

I know this is not easy to do, trust me, but there is a huge psychological component to this all, so the easier it is to relax, the better off you will be.

The side effects you had are really rare, and sound almost like you were having more of an anxiety reaction to the whole disease process, but that's just my opinion, especially after being on it for so long. What you are on now is the exact same thing, just in a different form. So, if you didn't react right away to it, then it was most likely anxiety. Don't worry.

There is no 100% right or wrong answer for you here. Whatever works for you is the right answer. Some people can control it with diet and vitamins/supplements and little or no medicine, some people will see no remissions for years and be on lots of medicines forever. There is no one magic pill.

The best advice is to take care of yourself mentally and physically, and keep an open mind to everything. Don't take everything you hear as the end all and be all, and nothing is ever written in stone...this is not the end of your life, and I have lived with this very successfully for almost 40 years now!

Sure, you may read some horror stories but those are the exception, not the rule. One day at a time, you will have good days and bad, and eventually the good ones will out number the bad ones...its a slow healing chronic disease.....you will be fine....!
Posted 3/1/2014 4:28 AM (GMT 0)
Welcome to the forum, sorry you are struggling with your diagnosis and treatment. I am glad your DR is trying other meds - please ask also for rectal mesalamine. This will help you get into remission more quickly.

Did you taper the prednisone? What dose did you start at and what dose did you stop at? what dose are you on now?
Posted 3/1/2014 2:08 PM (GMT 0)
Interesting. The symptoms you described are not normally associated with Lialda. They sound exactly like the symptoms of prednisone withdrawyl as you taper down the pred. Is this a possibility at all? Lialda seems like a much better drug than Apriso.
Posted 3/1/2014 11:13 PM (GMT 0)
Thank you for the replies.

I was taking 20mg of pred a day and tapered to 10mg a day for one week, then stopped.

I did do some reading on the Prednisone side effects duing withdraw.  This may have been my problem.  I had been off the Pred for 4 days when all the chest and joint pain started.  At that time I was only taking the Liada and I just wanted off all the meds.  Easy to do when my UC symptoms were gone. (in remission)

I now realize I do need to stay on a maintanance madication. 

I am back on Prednisone and Apriso trying to get back in remission.  I hope the Apriso works out but I now think that I might not have had any problem with Lialda.

I sure dread taking myself off the Prednisone.  I had a racing heartbeat, central chest pains, and other joint pains.  Some of this would go way if I twisted my body or moved around.  It was bad when I was laying down to sleep.  I could excersise and I knew it wasn't a heart attack.

I will taper off more slowly this time taking half pills the final week.

 

Post Edited (TJIndiana) : 3/1/2014 4:16:51 PM (GMT-7)

Posted 3/2/2014 12:59 AM (GMT 0)
You may need to taper the prednisone much, much slower. They make prednisone in smaller doses than 10mgs.
Posted 3/2/2014 2:46 AM (GMT 0)
I started Lialda on Christmas 4 pills made me sick but 3 a day were good for me...I am also starting a new pill they think I have a bacteria in my gut..ya me... XIFAXAN I start this Monday..I will let you know how it works...The food diet I have no idea...
Posted 3/2/2014 4:10 AM (GMT 0)
Sorry you have the dreadful UC =( But welcome to the group! Try to get back into remission with pred/enemas/apriso and then taper off pred 10mg each week, then taper to 5mg that next week then 2.5 the next.. etc..
Ask your GI first though!! Also for me helped to stay away from sugars.. but most doctors ive seen will tell u diet has no scientific evidence to do with anything.. but then some stay in remission.. so who knows :P
have a good day!
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