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Posted 3/11/2011 3:37 AM (GMT 0)
Hi, im going through some tough times right now and decided to join the community to tell my story.

I was diagnosed with UC in 2003.  I began taking Salofalk 4000mg daily for 2 years.  In 2005 I had my first bad flare up and was on prednisone where it was effective and it brought me back to remission.  In 2008  I had my 2nd flareup and the salofalk wasnt doing the job anymore, so my GI prescribed (Apo brand) Imuran 150mg.  I responded well to the imuran and was also taking Salofalk 1500mg for the next few years from 2008-2010 and was on top of the world.   So here is where the story takes a twist.

In December 2010 I moved to a different city and was prescribed a different generic brand of Imuran.  I thought nothing of it and by the beginning of January 2011 I was flaring up really bad.  So I was taking the Generic Imuran 150mg along with Salofalk 1500mg daily and it seemed like the brand switch of the Imuran must have triggered my flareup. After speaking with my GI she recommended I continue with the Imuran 150mg but go back up to Salofalk 4000mg again.  I tried it for the month of February 2011 and it just wasnt working.  So starting March 1st I have been put back onto 40mg Prednisone and 150mg Imuran.  It has been 10 days now on prednisone and the bleeding has gotten worse.  ALOT worse.   I just had a sigmoid today and the GI said that I am not responding to the Prednisone.  So now she has recommended Remicade along with the Imuran while tapering off the Prednisone. 

I'm just kinda worried about taking all this medication at once and so frustrated with life.  I really hope I respond well to the Remicade while still being on Imuran 150mg while tapering off the dreadful prednisone.  Since the beginning of January I've lost 45+ lbs and am very depressed.  Ive been on the BRAT diet (bananas rice apple sauce toast & turkey)  My BMs are 15+ every night and in the mornings while it gets better during the daytime.  Any advice or thoughts about my situation would greatly be appreciated.

Thanks for listening to me vent.

E

Posted 3/11/2011 3:46 AM (GMT 0)
If i were you i wouldnt be on any type of diet. i would be eating anything and everything regardless if it was junk or not.
Posted 3/11/2011 5:39 AM (GMT 0)
Yeah I think starting tomorrow Im gonna just starting eating normal food and not worry about what I eat.  I already have 15+BM a day and it cant get any worse than that.

Thanks for the advice.

 

Posted 3/11/2011 7:21 AM (GMT 0)
Can you try to get the imuran you were on that worked? You would think they would be the same if they are both generic but I guess they could be slightly different. That is crazy that you're getting worse on prednisone. I have heard of people taking even higher doses of prednisone but would that even help? you may end up having to go to the hospital to get this under control, it sounds pretty serious. Have you been getting your imuran levels checked? I get mine checked often and when I first started 6mp, I wasn't able to get into the theraputic range. It took so long to get things where they needed to be to stabalize my conditon. it can get frustrating. I hope you start improving soon. Are you on rectals? do you know where the inflammation is active? maybe a different 5ASA, some people have more luck with pentasa or sulfasalazine. You could also look into LDN.
Posted 3/11/2011 7:34 AM (GMT 0)
Hi..welcome to the forum!!

I agree that you should possibly try another 5ASA med...either of the above mentioned.

As well..you haven't mentioned any rectal meds..something you should consider.

I agree...eat! For comfort, avoiding some foods are less likely to cause gas.

q
Posted 3/11/2011 11:37 AM (GMT 0)
Second the topical.

"The mucosal concentrations of 5-ASA achieved by topical agents in the distal colon were up to 200-fold higher than those achieved by oral administration alone. Despite active colitis, over 40% of a topically administered 4 g 5-ASA suspension (equal to 1.6 g) reached the sigmoid colon. "

http://www.ncbi.nlm.nih.gov/pubmed/21385194
Posted 3/11/2011 4:14 PM (GMT 0)
If you are nervous about Remicade, see if you can try adding Rowasa enemas to see if it helps. My current flare was not responding to 40 mg after two weeks, but we added nightly Rowasa and it stopped the bleeding and urgency in 2-3 days. Also, my GI told me that we could have bumped the Prednisone up to 60 mg if we had to in order to stop the flare. Anything higher than that and he would put me in the hospital for IV steroids and probably Remicade at that point. Luckily, the Rowasa was enough to let the 40 mg do the trick.

Definitely eat! Make sure you are getting a good amount of protein to help your body heal. You need calories right now if you've lost that much weight. If this keeps up, please don't be scared to ask your doctor to send you to the hospital to get things under control.

I hope you find some relief and start feeling better soon.
Posted 3/11/2011 4:42 PM (GMT 0)
Thanks for the replies everyone!!!

I am currently back on the APO Azathiprine imuran brand since I started the prednisone. I take 3x 50mg imuran pills and 40mg pred right now. I'm not sure if switching back to the old brand I've been on for the last few years was a good idea because I was already using the generic brand for 2 months!!! Well I switched back anyways.

I'm going to speak to my GI today and ask her to put me on some other rectal meds. I tried some Salofalk supppositories for a few weeks in Feb 2011 and it didnt seem to help at all. Once I went on the prednisone, the doc said to stop taking the Salofalk orals 8x500 and Salofalk suppositories as she said they wouldnt be useful while being on Prednisone.

Also what is LDN ??? and what is topical?????
Posted 3/11/2011 5:30 PM (GMT 0)
You need retention enemas...not suppositories.

q
Posted 3/11/2011 5:33 PM (GMT 0)
LDN is more of an alternative treatment but some people with UC have luck getting into remission using it.
http://www.lowdosenaltrexone.org/

It's more something to consider if you're really unable to achieve remission with conventional meds. I hear it is easier to get a GP or rheumatologist to prescribe it than a GI.
Posted 3/11/2011 6:29 PM (GMT 0)
arghh so i called my GI today and she is on holidays until March 21st!!!

im so angry, they told me someone would call me regarding the remicade today but if they dont i dont know what to do.

do u think its possible to go to a walk in clinic to get prescribed rowasa enemas??

or should i just start taking the salofalk oral pills again and the nightly salofalk suppository? while still on prednisone and imuran

any advice would help.

 

Posted 3/11/2011 11:12 PM (GMT 0)
I think you could get enemas at a walk in clinic. it's not like you're asking for narcotics. If you want to give them a try, it may be worth a shot. The problem with mesalamine enemas is that they won't give you instant relief. You could take them for 2 weeks and only see minimal results, some people find them ineffective, some people do amazingly well on them. Have you tried steroid enemas? You may do better with those considernig you're really struggling. You could do a steroid enema at night and a 5ASA in the morning.

The 21st is far away, isn't there another doctor in the practice that can call in a script for you?
Posted 3/12/2011 1:10 AM (GMT 0)
i think im just going to go back on salofalk 8x daily again along with the imuran 150mg and prednisone for now.  Now i have to wait until March 21st for my GI to come back from holidays.

Hopefully the 8x Salofalk will help a little bit (4x morning 4x night 500mg).

what do u guys think?

 

Posted 3/12/2011 1:22 AM (GMT 0)
It's worth trying but i think some rectal meds could be helpful.

I was taking 12 asacol (400mg) a day during my last flare up and I couldn't get it under control. I wasn't on Imuran/6mp at the time. I had to take prednisone and had a very hard time tapering down without relapsing. I was using 12 asacol, cortifoam enemas, canasa supositories and prednisone and I was flaring up when I decreased. Finally I had to start 6mp which didn't help at all for quite a while.

Have yo had your imuran levels checked?

Why don't you put in a call to you GIs office and see if someone can give you a call back? tell them what's going on and tell them you're interested in adding rectal meds.
Posted 3/12/2011 1:33 AM (GMT 0)
Yes i have checked my imuran levels regularly. I'm ok with the imuran as i take regular blood tests for it.

So should I incorporate the 8x salofalk 500mg and the salofalk suppositories??? i have a bunch from before.

I called into the GI office and there is noone there... ill try again on Monday.

thanks !!!
Posted 3/12/2011 1:46 AM (GMT 0)
I would use the suppositories, it can't hurt. I always take asacol & canasa. I hope you can get in touch with someone on Monday. Hopefully the weekend is calm.
Posted 3/12/2011 6:44 AM (GMT 0)
Is it safe that im taking 150mg Imuran, 40mg Prednisone and 8x 500mg salofalk daily???????

i really want to add the salofalk back into the mix
Posted 3/12/2011 7:19 AM (GMT 0)
Some say it's fine, others say not necessary.

What you can do is just start the suppositories and use them twice a day. One at night and the other in the morning after your bms have quieted down.

When you're tapering the prednisone around the 10mg, maybe starting up the Salofalk oral will be a good thing...

quincy
Posted 3/12/2011 4:16 PM (GMT 0)
     I'm not familiar with Salofalk, but I took 9 Colazal pills daily along with prednisone and 50 mgm of 6MP.  When my doctor placed me on 100 mgm of 6MP it really made me sick...liver enzyme levels were double that of normal.  Before my surgery, last June 28th, my GI doctor sometimes placed me on 60 mgm of prednisone to "jump start" things and then next day down to 40 mgm with a 5 mgm per week taper.

     Taking that high of a dose of Imuran along with Remicade is risky.  My GI had me stop the 6MP two weeks before beginning the Remicade. 

     Everything stopped working for me.  Surgery gave me my life back but I know it is a scary thought.  I hope things improve for you.

Posted 3/15/2011 3:16 AM (GMT 0)
So I still cant see my GI until March 21st.

So the symptoms are still the same.  However when I have to go have a BM it extremely hurts as its passing through.  I have about 10 BMs a day and everytime it passes through i feel it in the bottom of my abdoman and it really hurts as it comes out.  The stools are forming now and there are blood trails, but why does it hurt so much when it passes through???

it gets worse in the middle of the night and mornings...

i cant sleep at night, i wake up every 2 hours or so and have to go really bad and it hurts when it comes out, but after i feel relieved.

 also i dont really have pains after i eat at all, it only seems like it hurts when the food is coming out of me!!

 

Post Edited (ToughTimes) : 3/14/2011 9:21:24 PM (GMT-6)

Posted 3/15/2011 6:34 AM (GMT 0)
Yeah, I can relate to those horrific bms.
Have you started using the suppositories...twice a day at the very least?

Is there anyone else in that doctor's office you might be able to see?

q
Posted 3/15/2011 11:26 AM (GMT 0)
Yes I am taking the suppositories as well.

Is there any reason why I have to pee soo often at night time?

I wake up ever hour to go pee and my stomach feels so bloated

Currently on 150mg Imuran, 30mg Prednisone (tapering), 4000mg salofalk, and nightly salofalk suppositories.

I am losing an incredible amount of weight right now and I'm eating so much food yet I have so many BM 15+ a day and excessive peeing that im getting thinner and thinner.

I just dont understand how I'm peeing so much at night when i barely drink any water at night time.

also when i use the suppositories, in the morgning all I see is white mucus and thick white stuff, i guess thats the supporitories not working..

help!!1

Posted 3/15/2011 7:01 PM (GMT 0)
Either a bladder irritation or infection or you're drinking too much fluids after a certain time.

I think you need to get to the doctor and have both stool samples and urine samples done.

Are you taking any probiotics?

What EXACTLY are you eating/drinking during the day?

q
Posted 3/15/2011 8:01 PM (GMT 0)
Hiya everyone has lots of good advice for you about medication but I was a bit worried by your diet. 

My nurse told me bananas could make me ill, also if on a flare I avoid fruit altogether so would avoid apple sauce too.  Also is it white rice and toast?  You should avoid brown as it is too fibrous.  Turkey is a very tough meat to digest in my opinion. 

If you are very ill and bleeding I am assuming you are off work ill.  So you don't need to eat much as long as you drink plenty of fluids.  Try a nutrition drink such as Complan for a couple of days, to give your colon a break.  Then go onto soup for a couple of days, low residue like chicken or cream of tomato.  Then introduce easily digested sandwiches like chicken roll on white bread.  After another couple of days you could eat low fibre meals such as chicken and mashed potato.

I hope this helps.

Posted 3/27/2011 3:29 PM (GMT 0)
update:

I had a remicade infusion on March 21st. I immediately felt better that day. The bleeding finally stopped 3 days later and instead of having 15+BMs I am down to about 3-4BM's as of today.

Thank god for remicade. I am still currently on 150mg imuran and tapering off the pred.

I have my next infusion in a week. I am so happy with the results as I was scared if the remi didnt work I would have to resort to surgery.

Also thanks for everyone who gave me awesome advice during the tough times i had.

One note to add: I have also started taking Multibionta vitamins with probiotics. Not sure if its helping but if anyone is interested in this multi-vitamin with probiotics theres a $10 printable coupon on their website for any size bottles of their vitamins. I bought a 30 pack for $4.99 (reg $14.99-$10 coupon) http://www.multibionta.ca/email/en_multibionta_coupon_10.pdf

cheers
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