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Ulcerative Colitis
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Posted 12/13/2009 3:18 PM (GMT 0)
I have gotten so desperate and depressed I decided to start my Imuran pills. I was putting it off because they scared me. Fourth Remicade and still nothing. Waiting on the appeal process for the Humira. I just couldn't take another day of feeling this way. I can't leave the house or get anything done. Last night I spent the night on the bathroom floor sleeping on my dogs bed. I just got tired of running back and fourth.


I was just wondering if they were going to make me feel nauseous would it be right away? How long before I see any relief from them? I am taking 100mg.



Thanks.
Posted 12/13/2009 4:01 PM (GMT 0)
I started on 150mg made me very nauseaus after the second day, went back to my GI and he prescribed something (can't remember the name)

that took care of it. Recently upped my dosage to 200mg, only thing I notice now is lack of energy, good luck

Posted 12/13/2009 7:04 PM (GMT 0)
They take a long time to get to a therapeutic level in your body- up to & beyond 6 months. I had been on Imuran for about a year & not seeing much difference, so after a Prometheus test showed we had some wiggle room re. dose, upped the doese to 150mgs/day. After a month or so on that dose, I did notice a difference. But it took forever to see any results, & they were more of a long-term change, not some magic bullet result like pred can give you. You have to look at the overall course of a few months to notice any changes. Stinks, but.... good luck!!!!!!
Posted 12/15/2009 2:12 AM (GMT 0)
Personally, I'd be more scared about Remi than Imuran. Try not to get hyped up about things. Try stuff out, and if it works, great!

Anyways, some people here say up to three months, my doctor told me up to three and I think that's when it started working for me. Maybe it's a gradual thing. I wish you'd started sooner, but in any case, I hope it kicks in fast! Good luck. btw, I don't get any side-effects from it. I love it.

Posted 12/15/2009 9:10 PM (GMT 0)
I have been taking the Imuran for a few days now with no side effects. I am not going back for the Remicade. It has really not made any difference at all. Not even a little.

I don't have any blood and the mucus is a little better but I think itis from the Rowasa and Imuran. It is the extreme urgency that bothers me. When it hits me I have no time to spare. I have to go and fast. It keeps me a nervous wreck while I am out. I don't dare put a bite of food in my mouth while I am far from home.

Just hoping I can gain a little more control. It has been very stressful at work also. How often do you get the blood tests done to monitor the levels?
Posted 12/16/2009 2:07 AM (GMT 0)

Boxermom2 said...
I have been taking the Imuran for a few days now with no side effects. I am not going back for the Remicade. It has really not made any difference at all. Not even a little.

I don't have any blood and the mucus is a little better but I think itis from the Rowasa and Imuran. It is the extreme urgency that bothers me. When it hits me I have no time to spare. I have to go and fast. It keeps me a nervous wreck while I am out. I don't dare put a bite of food in my mouth while I am far from home.

Just hoping I can gain a little more control. It has been very stressful at work also. How often do you get the blood tests done to monitor the levels?

Boxermom 2.

What dosage were you started at?  I started Azathioprine at 75mgs p/day two weeks ago.  It seems that I'm seeing some slow improvement.  My GI also said it can take up to three months to really kick in.

So far Im not noticing any side effects.  I don't know that if I did I could attribute them to the Azathioprine as I'm tapering off pred also which comes with it's own demons.

I hope all goes well!  I know what you mean about work, this disease can be frustrating! 

Posted 12/16/2009 3:05 AM (GMT 0)
I just started on 100mg. I think I feel a slight improvement if that is possible. More than I felt after four Remicades. It is hard at work because I can't really keep leaving my desk. I work at an assisted living residence with busy phones. I try to explain to them just how sick I am but I am not sure they really understand. I have been off the pred since October. I have been basically on the steroids for over a year. I just couldn't get myself to take them again.
Posted 12/16/2009 3:16 AM (GMT 0)
I've been on the pred 40mg basically since early July. Tried to taper once and symptoms came back. So far so good with this taper. The side effects of the pred worry me more than the side effects of Imuran. I was waiting tables in a fine dining establishment last summer and had a few close calls. I'm also a fly fishing guide, but that isn't as big a problem thanks to the great outdoors LOL! I so hope the Azathioprine is the ticket, at least for a few years.

Going in for my second bloodwork tests tomorrow. Round one was normal. I weigh about 180lbs. so I guess if we need to up the dose hopefully we have some room......
Posted 12/16/2009 4:52 AM (GMT 0)
I'm on 125mg and I think I get mine done... roughly every two months? It's really fast.
Posted 12/16/2009 5:08 AM (GMT 0)
Yea, I'm giong every week for the first two weeks then every other week for a while. Eventually I go to every other month. I have no insurance. You would not believe how much money I've spent on this disease this year. Meds, colonoscopy, GI visits etc. etc....
Posted 12/16/2009 5:51 AM (GMT 0)
Hello, I have been on imuran for close to 6 years now (or somewhere around that time). I
haven't noticed any side effects in that time and I get my blood and liver panel checked
every 3 months. It took about 3 months for it to start working but it wasn't until I got on Lialda
that I achieved full remission for coming up on 4 years now. Everybody reacts differently
to medicines. I was fortunate that it turned out for the best for me. Good luck.


Later...
Posted 12/16/2009 6:38 AM (GMT 0)
I hope it works for you Boxermom and with no side-effects!!!

:)
Posted 12/16/2009 1:33 PM (GMT 0)
I'm on 6mp which is similiar to Imuran (Imuran breaks down into 6mp in the liver) and have been on it for 3 years. In the beginning I was getting my blood drawn weekly, then bi-weekly, then monthly and after showing no ill effects from it I graduated to every 3 months.

I hope this works for you and I also had slight improvement when just starting it. It slowly got better and better.

Oh and sometimes the doc will do a Prometheus metabolites test to see how your body is processing it. This test can also determine when you are at your theurpedic (sp?) level.
Posted 12/16/2009 2:29 PM (GMT 0)
My insurance doesn't cover the Prometheus test. I had one done before I started. It was like $375. Insurance said it was experimental and won't pay. I can't really afford to pay to have it done often. I have a high deductible $3800. Just paying for the Asacol $650 every 90 days kills me. I think if the Imuran works he may take me off the Asacol.

I really hope it works. My next step is the Humira.
Posted 12/16/2009 3:27 PM (GMT 0)
You might want to check to see if your insurance will cover the metabolites test though. I have an HMO and the majority of my initial Prometheus was paid for but I was responsible for $65 of it. Now when I have the metabolites test, the insurance covers it 100% because it is said to be a maintenance test. I guess every insurance is different but have you called them to check to be sure?
Posted 12/17/2009 4:19 PM (GMT 0)
It was the metabolites test. They won't pay. Crazy.
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