Feeling lost: Remicade is next what can I expect

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mythreesons
Regular Member


Date Joined Feb 2008
Total Posts : 21
   Posted 1/17/2009 7:25 PM (GMT -6)   
Hi All ,
 I am a 45 year old UC sufferer who has had the worst year of his like. I have been on Imuran for 8 months and although my UC got better it never totally stopped the flare. What did happen if three infections the last one put me in the hospital for 5 days and on home care for the last 4 weeks. After this last infections the flare got worst. My GI sent me for some special blood test to see what the level of imuran my body was retaining. The results were that even though I am at the highest dose (300 mg) he will give anyone I am showing only just the lowest theraputic level of the drug in my system. I was given two options, Remicade or surgery. Even as bad as this year has been I can't bring myself to think of surgery yet so I told them I would go on remicade.  I have read everything they gave me on this drug and am some what fearful of the possible problems that can occur. I was hoping if anyone could let me know what to expect with these infusions,the side effects and symptoms that I may experience. I am set up to get my first infusion next Thursday.
thanks

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/18/2009 9:56 AM (GMT -6)   
The only side effect I've had is a very poor immune system...I also was on 40mg prednisone during my first three infusions, so in combination with that I suffered horribly from abscesses and staph infections.

The infusion itself is fine. By now you should be used to being poked and prodded, so the IV shouldn't be a big deal. : ) I kind of enjoy the time in the chair b/c I don't have anything I 'have' to be doing and it gives me an opportunity to catch up with friends (via phone). : ) I also really enjoy my doctor and nurse, so I normally go in before their clinic begins and we have time to chat...I'm going to miss that part of my treatment once my surgery is done. However, my doctor is close to my grad school, I will be doing pop-ins.

After my first infusion I immediately felt some relief, as I was in severe pain and miserable. But it quickly subsided and I was back to the way I was by my second infusion. My third was postponed due to a staph infection and open wound infection, but a couple weeks after my third I was able to reduce my prednisone slightly. I'm still suffering quite a bit but we're just trying to get me through till the surgery now.

From what I understand most see a great difference either after the third of fifth infusion. My doctor told me the third and others on this site have said that fifth. I had my hopes up for remission after each infusion and was greatly disappointed. Now, some feel this is their miracle drug, so hopefully it works for you too!

I know the idea of surgery is spooky and such a big decision. However, when you think about the quality of life you currently have and what it would be post surgery, that's one way to look at it. I'm just thinking about the pain and getting back to the way I used to be. : ) Many people on this site go to great lengths to avoid surgery. Some are finding great help with the spinach sunflower seed diet, and others with the probiotics. My case is just so far out of control and non-responsive that I'm not even going to attempt any of that b/c if the medications such as Remicade aren't working why in the world would spinach make a difference? : )

I so wish you the best of luck. The research on the Remicade can be very intimidating...but the cancers and major complications occur in a very small percentage of people. There are a lot of people currently on Remicade on this site, and some have found the Humira works well too. Please continue asking your questions b/c I want you to feel comfortable with your treatment...I've found such great support and guidance from this site and the j-pouch site that I only wish I had learned of you all sooner!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/18/2009 11:05 AM (GMT -6)   

I've been on Remicade for nearly three years. I was in remission within a month, after never having been in remission in the five years since I was diagnosed. I've stayed in remission through surgery, antibiotics, whatever. I can eat what I want. I've never had an adverse reaction of any kind, and actually the majority of people don't. I've had one cold and one sinus infection since starting Remi. No other infections of any kind.

I hope it works well for you.


Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/18/2009 12:05 PM (GMT -6)   
judy,

your well being gives some of us hope that may face remicade someday : )
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/18/2009 3:50 PM (GMT -6)   
I think it's WONDERFUL when the treatments and medications work!!! : )

I love that so many of you are finding some sort of relief and ultimately remission!!! I just wish I could experience some of it. : )

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


mythreesons
Regular Member


Date Joined Feb 2008
Total Posts : 21
   Posted 1/18/2009 5:29 PM (GMT -6)   

 Thanks for the replies,

 I hope that this works for me. I'm glad no nasty side effects have occured other than the immno supression issue. But I'm dealing with that now so it won't be anything new. In fact it was eye opening when Robin metioned the abcesses suffered, that is what I was in the hospital for the last time. It was drained and from  that I got the infection that landed me in the hospital.  I was on prednisone as well but I developed diabetes as a result and they won't use that on me anymore.  I will keep the surgery in the back of my mind and I know if nothing else works then that would be sometyhing I would come to terms about. It would be a small price to pay I guess to be well and in the long term be there for my family. I've been told by a long time friend and Dr that getting the inflamation under control is the main thing to aim for . It's that inflamation and it's damage that will do you in in the long run. I'll be undergoing my first infusion this Thursday and will try to keep a more positive outlook.

Thanks so much


Post Edited (mythreesons) : 1/18/2009 9:20:34 PM (GMT-7)

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