Med Change-VERY Scared & Need Advice!

Hi All,

It's been a long time since I've posted but I had a dramatic change in my condition and need some advice and support. After years of being on Lialda, canasa or rosewa enemas, my last scope showed active disease that has spread up the left side of the colon. I also had blood clots in my lungs last year that my GI doc now thinks was due to uncontrolled Colitis since all other testing gave no other possibility. She has decided to put me on Imuran 500mg-3 pills a day. Everything I read about this drug scares me so badly. She said there may be new drugs available in the spring/summer with less side effects or dangers. I just want to hear from people that have been on this drug, how long they have been on it and what if any benefits or problems have occurred. I just want to be prepared.

Thanks

My Imuran comes in 50mg pills. Three would be 150mg. That's a fairly standard dose, but a lot of doctors start out lower and ramp up as they continue blood testing in the early stages.

I was up to 175mg. Then my liver tests went wonky. I was not sick - didn't feel a thing when that happened.

My dose was dropped to what is in my sig now, with allopurinol.

I was on 4 lialda pills a day and 1-1,000mg canasa suppository 7 days a week. Prior to Lialda I was on Colozol. The problem was that even though I didn't have any symptoms that I could feel, I was never really in remission according to my Doc. My Dr is going to put me on a short term steroid for 2 weeks-not prednisone though. It is a newer one that doesn't have the side effects like pred.

Post Edited (P-Fit) : 2/27/2014 7:49:55 PM (GMT-7)

Yes, that is what she was saying. She sounded like she would change me over to the newer drugs when the were approved and available. She did mention pancreatitis to me. I know I have to get my blood drawn weekly. That's fine with me. I did that for 6 months while on Coumadin. I'd rather be safe. I took my first dose today and it did make me sick to my stomach. I took some compezine and that helped.

There are 3-4 biologics for UC now, with another 1-2 already i use for other auto-immune. I think at least 2 more almost out of pipeline. But, they are expensive, some people have alergic reactions, and some folks have them stop working after a year or two.

I did not want to do 6mp when I was sicker, and just ramped up the Rowasa and Lialda. But, I have been thinking about it now that I my frequency and consistency is fairly controlled. I do have some daily bleeding and I should be more proactive in addressing it. I may do the 6mp.

Update: Well, I had a rather quick adverse reaction to the Imuran: skin redness and very painful to the touch. Also extreme joint and muscle aches. I'm going back to the Dr today to see what she wants to try now. Still doing the Uceris steroids for 2-4 weeks. My reaction is not as bad with that drug.

Well, here is what we decided: Go back on the Imuran and hope the steroids will stave off any strange reactions. She thinks the reaction I had was an outward manifestation of my active disease. She is also going to put me on Remicade infusions. She wants to get me into remission quickly because she feels that it the best thing for me and doesn't want to wait 3 months for the Imuran to kick in.

How about trying LDN, low dose naltrexone?
It put me in remission, is very cheap, and has almost no side effects.
If this interests you, go to the UC resources page, and there's a post on LDN.

Ask about mesalamine enemas. Brand name is Rowasa in the U.S. If Canasa was helping you, Rowasa will likely help a lot more. Can you tell me anything further about blood clots in your lungs being caused by colitis that is so mild that you aren't even noticing symptoms? I have NEVER heard of that before and honestly, I'd find a new gastroenterologist if I were you.

I was diagnosed Nov of last year with pancolitis. Currently taking Lialda 4 pills a day. Went through a flare last month and was given steroids, which cleared flare. Still having bleeding with Lialda, and doctor wants to put me on imuran or remicade. P-fit I know how you feel, stay strong and it'll get better. Tomorrow I'll be doing a colonoscopy to help determine which medication my doctor will put me on. I've been through 3 GI doctors, and the ones I have now are truly amazing. Thanks for all the reviews on I mural.

35 yrs old;diagnosed pancolitis November 2013

Lialda 4 daily, multivitamins, fish oil, calcium, iron, canasta when symptoms are present

We are ALL scared of side effects, but think of this:

All of our doctors now are telling us that use of long term steroids is a no-no. Mine is actually telling me that use of long term steroids (except in obvious dire emergency life threatening situations) is actually being considered malpractice. When I started this disease in 1975 it was one of only two medicines available...

So....when it is actually safer (ethically, medically, and legally) to put you on things like Imuran, 6-MP, Remicade, Humira, Simponi, etc...what does that tell you about the safety and efficacy of these things?? Yes they come with side effects too, but they are NOT considered bad choices, and actually considered safer now ethically, medically, and legally over steroids...so there is something there....true? That's good enough for me, and I've had close to 40 years experience with his disease...and I can say I've seen it all.

Be well all of you (and me)!

WHen I had the clots I had every test possible and no reason could be found for why they developed. My GI doc said that uncontrolled IBD could cause the body to go into a hypercogagulative state and cause clots. I hadn't had a colonoscopy in 3 years prior to the one last month. She was surprised that witha colon as bad as mine was that I wasn't having more symptoms than I was, so she said that she could not rule out this diease causing my clots. That is why she wants me in remission ASAP. The steroids aren't making me ill, it's the Imuran. I talked to her today and she told me to go back on the Lialda, add canasa suppoistories daily, use the enemas at night and reduce Imuran to 1 pill 50mg down from 3 pills. She said she had to keep me on that so I wouldn't build up antibodies when we finally get the Remicade approved. The only other option was to go into the hospital for a day and get an infusion in hopes of getting the INS CO off their a** so they would pay for treatments going further without all this run around! That is not an option I want to take, as I have a small child AND I don't want that type of bill. It is really criminal what these INS CO's do to people.

Sara14 said...
Ask about mesalamine enemas. Brand name is Rowasa in the U.S. If Canasa was helping you, Rowasa will likely help a lot more. Can you tell me anything further about blood clots in your lungs being caused by colitis that is so mild that you aren't even noticing symptoms? I have NEVER heard of that before and honestly, I'd find a new gastroenterologist if I were you.

I will say--I HATE enemas and I HATE steroids, but using hydrocortisone enemas pretty much kicked me into remission when 6MP and Remicade together couldn't quite do it.