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Well, just met my new GI for the first time...

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Ulcerative Colitis
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Posted 10/4/2007 4:12 AM (GMT 0)
I met with my new GI, this afternoon, for the first time.  Got to get the good ol' Flex. Sig.  Seemed like a good guy, suppose to be one of the best on the island.  Anyways, he said that right now on a scale of 1 - 4 (4 being the worst UC)  I am at about a 2 1/2 (moderate/severe) which was kinda a shock, cuz of all the meds Ive been taking.  Thought it wouldnt be that bad.  He scoped the complete left side up to the sigmoid and just around the bend.  He said that as he got to the transvers colon it looked as if it was not as bad from what he could see, but being the sig...it can only go so far. 

He wants me to start weining off Pred. and is putting me on Imuran 150mg / day.  Anyone have any advice/opinions on Imuran.  Kinda nervous about leaving Pred. cuz its actually been really good to me.  I am also to stay with Asacol and cortofoam (only to use if needed)

Did anyone else have to do lots of blood work when they first started on Imuran?  Im to have bloodwork done 1 / week for 3 weeks....then 1 / month for 3 months....then 1 every 3 months.  Im gonna feel like a pin cushion.

Then I get to meet with him again in 3 months.

On a different note....while I was waiting to go in for my scope, there was a guy across from me around my age who was waiting, then went in, and came back out from a Colonoscopy and Dr. Holland (my doc) was talking to him.  He has run outta options and is going in for surgury.  Kinda puts ya in a weird place when your just at the start of figuring out your UC and you hear someone at the end of figuring out their UC.  Anyways...if by chance the guy at Vic. Gen. who wouldnt give up his spot for me (lol) is on the board here.  Hang in there.

Posted 10/4/2007 6:41 AM (GMT 0)
Hi...can't help you with the imuran (never been on it), but it seems many do have success with it, but not all can use it. Before he puts you on it, make sure you'll be getting regular blood tests for liver, kidney enzymes, etc.

Is he putting you on it while you're tapering off the pred?

So, do like the new doc?
When's your next appointment with him?

quincy
Posted 10/4/2007 12:02 PM (GMT 0)
I thought the same thing when I first started 6mp - that I was going to be a pin cushion! But it's not that bad really. The longer you're on it, the less you need to get your blood drawn as long as there is no complications. I get mine drawn every 3 months now since I've been on it for a year. If he ever has to increase your dosages, you might have to start having your blood drawn more frequently again to be sure it's not messing with your liver. Did you have your initial bloodwork done or the Prometheus test?
Posted 10/4/2007 1:03 PM (GMT 0)
Hey "Q"

Ya, he is having me taper off the pred. at -5mg/wk until im done (which will take at least 10 wks) and starting Imuran as soon as the prescip. is filled. He said that way by the time im off the pred. the Imuran should be kicking in. The new doc seems like he knows his stuff. Old enough to be wise but not too old to be stuck in the stone age. According to 2 GP's, 1 nurse, 1 dietition, and a relative who sees him as well, he is suppose to be the best on the Vancouver Island. I will get to see him again in 3 months.

Hey "Red"

So, are the side effects the same with the 6mp as Imuran?  If so, did you have any problems?

This is what the order says for my blood work to be done asap........

"Imuran blood work, cbc, platelet count 1/wk x 3 then 1/ month x 3. Then quarterly x 3 yrs AST, ALT, GGT, ALKALINE PHOSPHATASE, BILIRUBIN, now and q 3 weeks x 3, Then quarterly x 3 "

I havent got a clue what any of that means, but thats what he has asked for. Now he said something about there is a rare side effect that dont usually happen with Imuran and it was something to do with bone marrow. Anyone know anything about that? He also said that another side effect is possible "Pancreatitis" and if I start to experience that, that Im to stop the Imuran immediately and phone his office.

So, all in all, I think its a good thing to have this doc on my side. The only pain is that I have to drive over an hour to go see him. But then again, we talked yesterday and I asked him about doing possible conference calls with myself, my GP and him, for the check ins and he said that he could do that.

Posted 10/4/2007 1:27 PM (GMT 0)
You have a wise doc. Getting you off the pred is a good thing. We'll see how you do with the Imuran, but for me it's been wonderful (mostly). I was really scared when I started it, but after six years, I gotta say it's a wonder drug for me.

Your wise doc also has you scheduled for lots of blood work. There can be suppression of the bone marrow production with Imuran, among other side effects, and the blood tests will alert you and him to any changes in the function of your liver, etc., so it's imperative that you follow his advice in that regard.

I hope the Imuran works as well for you as it does for me!

Mitz
Posted 10/4/2007 1:30 PM (GMT 0)
I don't want to scare you but what he's talking about with bone marrow is that in a very few people imuran can cause you to stop producing bone marrow. That's what all the blood work is for, to make sure you aren't one of those people. They send your blood out to see how well it metabolizes the drug and that helps determine your dosage. My GI gave me a script and said to hold onto it unitl after the blood tests were in. When they were in he decided to up my dosage so sent in a new script. I have been on imuran since 8/23 and nothing so far but its early. Still on pred as well. Bright side is i haven't had any side effects! Though my body is still hangin on the pred side effects. Pancriatitis can be a side effect so watch out for pain and such. I thought imuran was gonna be scary but so far so good and I'm willing to do anything to get off of pred.

Glad you found a GI you like, it's so important to be able to talk to your doc and trust him. Good luck!
Posted 10/4/2007 2:10 PM (GMT 0)
6mp and Imuran are very similiar - just broken down differently by the liver. I only had minor side effects when I started it such as mild nausea, fatigue, some hair loss and headaches which I alleviated by taking it at night (except the hair loss). My side effects only lasted about a month or so until my body became accustomed to the med. And as far as I know, 6mp and Imuran usually have the same side effects. Oh and some people that are on this seem to have more sensitive skin so be sure to wear sunscreen while out in the sun. It does lower your immunity so it's important to frequently wash your hands and try to avoid people that are sick.
Posted 10/4/2007 3:51 PM (GMT 0)
Sounds like you're in a similar spot to where I was a year ago. It took me some time to decide to go for the Imuran, but after some research and talking with people on the board, I decided to go for it and I'm glad I did. I now have my life back!

I don't mind blood draws, so that wasn't bad. It's important to keep tabs on everything to avoid those side nasty, but rare, side effects. The main reason is to check liver function.

I decided I wanted quality life!

Sounds like a good doc. But the question is, how did you like him? Did you feel like you could trust him? Did he make you comfortable? Did he answer your questions? Is he accessible if you have a question or a problem?

Best of luck!
Posted 10/5/2007 11:29 PM (GMT 0)
I did really like my new GI....seemed nice, trustworthy.  The only thing now, is that the wife and I are trying to increase our family by another (we wanna make a baby) and with Imuran you are not suppose to.  So I put a call to my GI the other day and still havent heard back from him.  The wife was quite upset that we cant, especially if Im going to be on this stuff for awhile.  Im guessing that it will take awhile for the doc to call me back, he seems quite busy.

 

Posted 10/6/2007 12:08 AM (GMT 0)
I do know that it is very hard to concieve while on Imuran. My cousin and her husband tried and tried and tried! Never knowing that his Imuran was causing the problems. Once he stopped it, they conceived quickly!
Posted 10/6/2007 5:55 AM (GMT 0)
Ya....all the medical books say "DO NOT TRY AND CONCEIVE WHILE TAKING IMURAN" can make nasty problems.  They say that you should wait at least 3 months after being off Imuran before trying.
Posted 10/7/2007 11:35 PM (GMT 0)
Insofar as the blood work goes - the Dr has blood tests done every month. This new Dr at Mayo clinic will only write a prescription month by month. After he gets the blood test he will ok another month's dose. He gave us an order for one full year so it certainly looks like hubby will need to do this for a full year. From the above posts this seems a little over the top but we will do as he says.

The prometheus tests (3 different ones) all came back on the very bottom scale of everything and he is quite certain this higher dose should be ok but this is how he does it.

By the way.............Blue cross rejected the bills from Prometheus "out of network". I'll call them tomorrow. I hope I can convince them to pay this - it is almost $900. If they won't pay it I will try calling Prometheus to see if they will lower the charges for an independent pay situation which someone wrote in on the forum about awhile back which I would have never thought of.

Wonder if they'll have a problem with the monthly blood draws. I would think not.
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