Crohn's Disease Forum » Your Story » My suddenly serious disease after 20 yrs


09-12-2010, 03:46 PM   #1
BulldozerKing
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My suddenly serious disease after 20 yrs

Well, have had this UC for 20 years and no problems really ever, was on asacal 6 x 400, upped to 6 x 800 last year due to disease creeping it's way up the ladder.

Sudden massive attack this spring -- went on Prednisone 50 mg/25 mg next week etc.... did it's magic. 4 weeks after that, kaboom, another attack that was wicked, Prednisone again -- this time not so effective but still pretty darn good. Then, about 3 weeks after weened off that, smasho!! an Attack that caused me to drop 15 pounds in 1 day, went to ER etc.. Doc thought I would need a blood transfusion but hemoglobin levels okay... This happened WHILE I was on Prednisone... So I continued to taper off prednisone and 3 weeks later by blood volume was down to 9.3G/L from 14 which is normal.

Just started Pred again on Friday, has done it's magic but my blood volume is still low and it supposedly can take a month to get back to normal.

sucks feeling good about my UC but not having energy to exercise due to blood hemoglobin levels.

Docs want me on Imuran if this round of Prednisone fails during tapering off. I don't see much point to it from what I have read.

Thoughts on Imuran??? Alternatives I could suggest?

I want to go back on Salofalk, I was on that years ago and it was fantastic...it took them 8 years to diagnose me as I was perfectly fine during every test they did on me at the time!!
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Prednisone 50mg week1, 40 week 2, 30, week 3 etc...currently week 3.
Asacal 6 x 800mg
VSL#3 -- 1 pack at suppertime
Vitamin D 4600
Centrum Complete.
Starting 50 mg of Imuran a day on Sept 30th.. waaa
09-12-2010, 04:01 PM   #2
Nyx
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I'm thinking that your doctor would not have wanted you on Imuran if your disease wasn't serious. I was on it for about 3 months prior to my colostomy (I got on it waaaay too late) and had no issues with it whatsoever. Salofalk is for very mild cases, Imuran for mid to severe cases. I'm thinking that your disease has progressed past the mild case; and from all the flares you've been experiencing, it seems to add up. Plus, you can't stay on Prednisone for a long time, it would do more damage than the Imuran.

Sorry I'm not more helpful! Good luck to you and welcome to the forum
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Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

09-12-2010, 04:15 PM   #3
seaofdreams
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I was put on Imuran this time last year after I had been on Salofalk which wasn't helping me and I ended up in hospital.
I did really well with Imuran for a year. I experienced almost no side effects and I went relatively problem free for almost 12 months.
From what I understand, Prednisone will help reduce inflammation but it can't help heal any damage to the tissue while Imuran can. Don't quote me on that though haha.
Also as Nyx said, Prednisone shouldn't be used on a long term basis. For me it had far more side effects (bloating, modd swings, anxiety) than the Imuran ever did.
Hope this helps and good luck (:
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"Never feel guilty for being sick and try to stop comparing yourself and your life to others. You're doing the best you can under the circumstances you have and you're doing great."

Diagnosed with Crohn's in August 2009
Medication: 20mg Methotrexate injection weekly
Supplements: Folic Acid|Vitamin D|B12|Iron Complex|Magnesium Complex|Calcium|
09-12-2010, 04:48 PM   #4
slice
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What about Remicade or Humira? That seems the logical choice given the severity of your symptoms and your troubles coming off Pred. Imuran can be brought into the equation too, but it can take quite awhile to take effect and it seems like you need relief fast but still be able to get off the pred. Hang in there while you get this sorted out.
09-12-2010, 05:04 PM   #5
BulldozerKing
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Remicade's not covered in Canada and cost $2K a shot! Anyways, i heard that you have to stay on Remicade your whole life if you start it?? NO?
09-12-2010, 05:08 PM   #6
Nyx
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Remicade is covered in Canada...have you applied for Trillium? It's Canada's health insurance plan for those that don't have health insurance. They were going to cover me for Remicade before my surgery. So I don't need it now...lol
09-12-2010, 05:15 PM   #7
BulldozerKing
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Not in Alberta, I checked. You must have had it covered under some employer plan. I am self-employed and only get provincial coverage and it is NOT covered in Alberta.
09-12-2010, 05:23 PM   #8
Nyx
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I'm self employed as well...I just checked and Trillium is only available in Ontario...sorry for the misinformation! I'm sure there must be some health benefits you can get in Alberta that will cover it...I had to have a plan before I could even be considered for treatment with Remicade. Did they not give you that info at the doctor's office? Or do they expect you to pay for it out of pocket there? (this would be good for me to know since my bf works part time in Calgary and we lived there for 18 months about a year ago and could go back in the future).
09-12-2010, 05:32 PM   #9
Crohn's 35
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Remicade's not covered in Canada and cost $2K a shot! Anyways, i heard that you have to stay on Remicade your whole life if you start it?? NO?
Wow that is cheap, when I was on Remicade it was $4,100 dollars, thank God we had insurance! Pharmacies seem to be the only winners here!
09-12-2010, 05:40 PM   #10
acg101
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I was on Imuran for over 8 years for a mild to severe case. I thibk anything is better than pred which masks the real cause of the problem and has long term devastating effects. It takes Imuran 6 weeks to kick in full power and I did not have major side effects (only when I got to over 150mg I had side effects).
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-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
09-13-2010, 01:32 AM   #11
DustyKat
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Hi BK and

Can't advise about alternatives to Imuran but why do you think it's not worth trying?

I can only speak of Imuran as a maintenance drug not as first line treatment but my daughter has been on it for 4 years post surgery and she has not experienced side effects and has been in remission since her surgery.

This is great place for support and info so I hope you stick around. Welcome aboard and good luck!

All the best,
Dusty
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