back on the pred :(

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LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/28/2009 7:31 AM (GMT -6)   
So...after I posted about my last colonoscopy not being great news...i went to see my doc.
He says I am still inflammed all the way through (pancolitis). I am not having the diarhea I used to since being on Pentasa, but he says we cannot leave it inflammed. He put me back on 60mg of pred...and in a month I have to go see him to start either humira or imuran or something..I can't remember what exactly he said (can't believe I'm not getting better).
I'm so frustrated and feel like I'm getting closer to surgery. He says I'm still a ways from that...but what if these meds don't work.
I have been so careful what I eat...took all my meds as directed...didn't drink much...exercised when I could...but still lost weight, felt crappy and continued to battle this thing...now on with the scary drugs. I HATE that I'm back on pred.
I trust my doctor, and he even mentioned that if I was reluctant or felt at all nervous, he could send me to another specialist to get another opinion on everything and for the guy to maybe give me a better understanding of what's going on.
I just want to get some weight back on...and get on with things...without these crazy drugs..but I don't see that happening.
I never hear of any wonder stories about these biological drugs..was always under the impression that they just prolong the inevitable...true? or do they help?
What now...just wait and see? How can I help myself. I just want to be healthy and I'll do what I can to get there. Right now I'm trying to take advantage of being on pred for a few months and pumping in the calories to put 5-10lbs back on. (I lost 25lbs over the last year from 170 to 145). In a bit as I taper I'll settle back into my usual safe diet.
These drugs are going to kill me before the colitis does...
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


mindstyle
Regular Member


Date Joined Aug 2009
Total Posts : 62
   Posted 8/28/2009 7:58 AM (GMT -6)   
I understand your frustration mate. Been there. But what I have learnt is, stay positive and don't think of negative too much. get the best possible out of life. Your condition will take its own course and you try to keep it in control. Is there anything else beyond this that you can do? No, then why keep thinking and waste every second of brilliant life? I spent almost a year in a depression due to these issues and stress at work but thanks to my wife, I am back in life :)
Even at the time of writing this post, I am getting stomach cramps (and I am Pred too) and my GI refused to prescribe me pain-killer, still I am not thinking of it much. Enjoying best part, totally ignoring crappy part of life. At least, I like it this way
Male, Diagnosed with Ulcerative Colitis since 2006, at the age of 30 years

Currently taking
100mg of Azathioprine, twice a day
2250mg of Balsalazide Hydrochloride, 3X a day
1mg of Vit. B12, once a day
500mg Salazopyrine suppository once a day.

30mg/day of Prednisolone since 2009/08/21 to control recent flare up, will reduce the dose by 5mg each week. (hoping not to swell up)

250mg Neproxen as and when required for migraine (usually twice a week and I don't know if this is side-effect of Salazopyrine)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/28/2009 10:29 AM (GMT -6)   
I hope you get feeling better soon.
Did your GI give you a reason for waiting a month to start you on a new drug? It seems that you should go ahead and start that now, so that you can get off the pred faster.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/28/2009 3:30 PM (GMT -6)   

He didn't say. He just said for me to come back in 1 month and we'll go over what I'll be taking (I believe imuran)

I am staying on the pentasa as well.

I am on 60mg of pred :(....so by the time I go see him I'll only be down to 50mg anyways....I hope this is my last time on pred..I am already edgy and hungry as heck.

I'm really just trying to not think about it and just get on with life. I'm focusing on getting back some weight and getting more exercise. I can't help but think a bit about what these meds do to me and what imuran could do as well.  I was a bit of a health nut so it makes me a bit nervous.


Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 8/28/2009 8:16 PM (GMT -6)   
I agree with fruit girl- if you're going to go on the stronger meds than you should get on them sooner to get off of the Prednisone. I feel your pain. I am in a flare and just got discharged from the hospital today. I was on Pred 40mg orally before I went in and then shot me up with IV Solumedrol 60mg while in there since Monday. I am back on Pred 40mg for two weeks and then we will start to taper. I used to take 6MP (Mercaptopurine), it's an immunosuppressant- I believe in the same class as Imuran. It worked well for 4 years and only had 1 flare since then but I guess all of these meds eventually stop working:( I also took Remicade, one of the biologics. It worked well the first time and then I reacted the second time around. I think they infused it too quickly and I reacted with throat swelling, hives, etc. I just had a scope on Tues and my disease got worse but it's only on the left side. My dr does not want me to do surgery. He wants me to try Cimzia or Humira. Ironically, I want surgery and have it scheduled for Oct 5. I don't see why I am proloning the inevitable. I met with a surgeon who said I would prob have to have surgery within 5 years so I say let's just get it over with. If you want to try the meds, I would urge you to get in to see your GI sooner because the immunosuppressants take 2-3 months to kick in. Maybe you can also try one of the 5ASA's. Lialda worked for me. Asacol and Colazal gave me migraines. They can help you get into remission sooner while the immunosuppressant kicks in. For me, I believe surgery is the way to go. I've had UC for 10years and that is the mark where chances for colon cancer go up and everything else. 6MP may cause lymphoma so I couldn't stand taking it. The Prednisone is giving me blurred vision, acne, moon face, insomnia, increased appetite- all the fun stuff. I can't wait to flush all my meds down the toilet. Hang in there and best of luck.
Nutz
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  Currently taking 6MP 50mg, Prednisone 30mg, Lialda 2 tabs/day, Colocort enemas, Canasa suppositories


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/28/2009 8:55 PM (GMT -6)   
I am not sure why he didn't put me on right away. After reading what you two have had to say, I am caught in the middle of not wanting to start this drug, but wanting to get on it right away so it works.
I am taking Pentasa, which is a 5ASA. I asked him about possibly switching to Apriso to take only once a day. He seems to believe all 5ASA's basically will do the same thing.
 
It seems like these meds just prolong surgery? Is there any chance I might acheive remission and stay there? or are only people that can acheive it with 5ASA's alone the lucky ones??
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 8/29/2009 12:42 PM (GMT -6)   
I forgot you said you were on Pentasa- didn't realize it was a 5ASA. I say if it is working for you than you shouldn't switch just for the convenience. I say this because a lot of them cause headaches and nausea and you probably don't want to have to deal with that too if the Pentasa is working. There are definitely people who stay in remission- it's just some are luckier than others. I, unfortunately, have a Type A personality and stress over everything- which is exactly what this disease cannot tolerate. Personally, I think surgery is the best option for me, I think you just get to the point where you're "over it" and don't want to take any more meds and deal with the flare ups. I hope you can get some relief soon!
Nutz
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  Currently taking 6MP 50mg, Prednisone 30mg, Lialda 2 tabs/day, Colocort enemas, Canasa suppositories


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/29/2009 10:16 PM (GMT -6)   
I always used prednisone for flares -- and as weird as the effects were, I fortunately didn't have permanent effects even after all these years.
I am on Remicade and the change it made for me is amazing. It was a long time coming! My doc has had some paitents on it for 10 years and it is still working for them. It's hard to imagine getting infusions every 8 weeks forever... but I will! Then maybe Humira or something like it that's more convenient will be approved for UC (and covered by insurance), that would be great.
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow


mel83
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/30/2009 10:53 AM (GMT -6)   

I've been on 3 pills of imuran daily (I don't know the mg) for four years and was symptom free. I found I suffered from its side effects (sore joints, blood shot eyes) for the first few weeks and then they vanished and I was completely fine. I sometimes think of the long term side effects, but I wish I could live symptom free on imuran forever. I am currently in a flare and have had imuran increased by half a pill. I also take 500 mg of salofalk split between morning and night and salofalk enemas nightly. Im thinking Im going to have to go back on a steroid as Im not getting better, and my doctor was telling me about entocort, it seems to have less side effects compared to prednisone.

Hope this is somewhat helpful. I just know without these drugs I wouldn't be here. As when I first had symptoms I was left for 6 months, waiting for a colonoscopy being told I had hemorrhoids... after losing 35 pounds and needing a blood transfusion, it wasn't hemorrhoids but pancolitis.

mel

LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/30/2009 3:00 PM (GMT -6)   
I also have pancolitis. Anyone ever get from pancolitis to remission? Is it possible?
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


mel83
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/30/2009 3:13 PM (GMT -6)   
In 2005 I was diagnosed, by July 2006 I was done my round of prednisone. I then began imuran and I was in remission from 2006 to April 2009. I probably would still be in remission, but this April I had alot of stress with losing my job and my father being very sick. But it is possible. The flare I am in now is only up to my left side and its not full ulcers just inflamation.

LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/31/2009 9:26 AM (GMT -6)   

Thanks Mel...leaves hope that I might be able to put this in the back of my mind one day, if not at least for a few years.

:-)
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/31/2009 9:30 AM (GMT -6)   
I have always had pancolitis. and am in remission with Remicade.
49 year old female attorney, diagnosed UC/pancolitis 1985. 
Asacol maintenance for 20+ years; 
Prednisone & Rowasa for flares. 
Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some. 
Remicade started April 2009 (Humira denied) and doing great~ learning what normal is~ wow


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/31/2009 11:04 AM (GMT -6)   
I have pancolitis (or did when I had my c-scope), and I'm in a really solid remission, in that I have absolutely NO UC symptoms. I had to use pred to get into remission, but it was a pretty short course. I'm using Apriso and two mesalamine enemas per week to hopefully stay in remission!
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (currently tapering; 12.5 mg).


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 8/31/2009 3:23 PM (GMT -6)   
I always remind myself there are worse drugs than pred. And I agree with the others around here that it seems weird that you aren't overlapping the pred with starting a new drug. Maybe, just to be thorough in your understanding and treatment options, you should take your doctor up on his offer for a second opinion? It's probably never a bad idea!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.

Asacol (12/day)
Azathioprine (175 mg)
Prednisone (60 mg)
Rowasa nightly
Immodium daily
First Remicade 6/22/09 [discontinued 8/12/09, not helping]


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/31/2009 10:20 PM (GMT -6)   

Ya..i should maybe take him up on his second opinion offer.

I'm just worried that he might take offense or something. I do trust him and he's been willing to listen to me somewhat, don't want to be shoved over to someone i might not feel as comfortable with.

I go see him in 3 more weeks...maybe I'll run it by him then. That's when he wants to start the imuran. I'll still be on 45-50mg of pred by then, so he is overlapping quite a bit i guess.

Thanks for al of your inputs...I really appreciate it. I can talk my fiancee and other people blue in the face (even tho sometimes I just keep it to myself)...but it never seems they quite get it the same way you all do. So frustrating some days. I guess it's best to stay positive and keep my fingers crossed that the cure comes before my colon goes. I hope I'm a long ways away and some good remission time from that!!

 


Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"

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