If you are on Remicade are you scared

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/25/2009 10:15 PM (GMT -6)   
of the serious potential side effects?

I had my first transfusion and I'm terrified! I just can't imagine staying on this past remission!

Please share your story, experience, and thoughts with me!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/26/2009 8:25 AM (GMT -6)   
Nope. I was so sick, I figured if worst came to worst I'd opt for ten to twenty years of functional life over 40 of being sick, in pain and unable to do anything.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/26/2009 8:29 AM (GMT -6)   
I have the same concerns Shelliesv.  My GI is opting me to get on Remicade but I feel like he hasnt tried to have me explore many treatments.  The only med I've taken has been Asacol and I dont feel like it has done anything to me sice I've been diagnosed. 
I guess you ahve to way the option about how bad you feel but in my case I just feel that there are sooo many alternative treatments out there for me to get on remicade already.
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/26/2009 9:33 AM (GMT -6)   
Judilyn said...
Nope. I was so sick, I figured if worst came to worst I'd opt for ten to twenty years of functional life over 40 of being sick, in pain and unable to do anything.


I can't believe you flared for 5 years! So you still go for regular transfusions? Have you been tempted to quit now that you are in remission? I had ready a study that was a 1 year follow up where they were finding these infections, that's why I'm so nervous.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 4/26/2009 10:12 AM (GMT -6)   
Well, come May I'll have been on it for about 4 years with no problems and feeling better than I ever have. Like Judy, I felt quality of life is better than flaring all the time. I can now workout and take care of myself, eat properly, and I don't always feel like I have something raging inside my body. But everyone must do what works for them. Take care and let us know how you are doing with the infusions.
Carol

Remicade - will have my 27th infusion on March 19 Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 4/26/2009 10:40 AM (GMT -6)   
I was terrified of starting Remi last year, and still am a bit scared about the long-term effects. But I love being in remission, so I don't want to give it up!
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/26/2009 12:05 PM (GMT -6)   
I've been on it for over three years, infused every 8 weeks. I have never even considered stopping it, and just prayed I didn't develop any allergic reactions and have to stop it. I'm sure if I stopped the Remi, I'd be in surgery within a year.

The potential side effects are serious, but not very common. In comparison, the long-term side effects of Prednisone are also serious and much more common. In the time I've been on Remi I've had two colds, each of which lasted about 5 days. I also had one sinus infection which cleared right up with Azythromycin. That's it. And I worked with families and children under three for the first 2 1/2 years. So not everyone has problems with infection.

Only you can decide what you want to do. If your symptoms were relatively mild, it may be worth the risk of flaring again to you.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 4/26/2009 1:10 PM (GMT -6)   
You can't just take Remicade until you get into remission and then stop it, you won't stay in remission. And if you stop it you may not be able to tolerate it when you want to try it again.

The Remicade is not a CURE, it's a treatment. It will heal your colon and keep you in remission only as long as you are on it. Every drug has risks, you need to weigh the benefits against the risks and how you feel about it all and what you are comfortable with. I have had good experiences with the Remicade, just had my 15th infusion yesterday. But if you are actually terrified as you say, and if nothing you research about the drug or read here from people who have used it, you may want to look into surgery. Surgery IS the cure for UC. Np colon, no disease.

I had just about made up my mind to have the surgery but the cost of being out of work for a couple of months was an issue for me. The Remicade is buying me time and giving me back my life. Unless another medication becomes available, as soon as the Remicade stops working for me I will likely have the surgery and then be done with the whole UC thing.

So fear not, you certainly have options. Just find out as much as you can about Remicade and the surgery and figure out what is best for your life-situation and your feelings about medication vs surgery. Both of which have risks, by the way, as does doing nothing and just trying to live with the illness (which, uncontrolled, increases colon cancer risks).

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

15 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 4/25/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/26/2009 3:38 PM (GMT -6)   
Since I've been on pred with no improvement whatsoever for 2 months and I've been hospitalized twice totalling 8 days in the last 3 weeks, I finally reached the point where I had to make a decision. I chose to do the remicade transfusion because as much as it scares me, a colostomy scares me more.

It's good to have this forum. This is where I read about Remicade first and the experiences of those here are what got me to talk to my doctor about it.

I'm only out of the hospital for 4 days and I'm feeling much better but I don't know if that's from the IV steroids or could the Remicade be working that quickly? How long does it usually take to get into remission?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 4/26/2009 9:46 PM (GMT -6)   
Remicaid really does work differently for everyone.  Some people see results immediately, others it takes 3-5 infustions before they feel they are in remission.  While on Remicade the infections from colds, staph, etc. can be treated and it's not the end of the world.  If I started feeling a cold coming on I started taking Mucinex immediately.  I was never able to taper my 40mg of Prednisone so my immune system took quite a beating, thus causing me many issues.  However, if you work closely with your GI you should have a game plan set.
 
I was so sick that I was willing to try anything.  I was tired of being tired and constantly in a flare...mine lasted almost 2 years and only fully ended once I had the surgery.  And you know, the surgery option is scary.  My husband and I joked about it being my cure since my diagnosis, never did we think it would happen sooner than later!
 
You really need to examine your quality of life and what is being compromised due to the UC and how much you are willing to give up.  I found that I was able to manage and control the UC to a point, but once I started losing that control and was struggling to just make it through the day I know that was no way to live. 
 
I do feel that your heart will tell you what to do no matter what point you reach.  I'm so sorry you're at the phase of Remicade, but it is a miracle drug for many people.  If for some reason you feel it is not working and are scared about the surgery option there are many many many people on the ostomy board that have been in your same shoes...like me.  BUT!  Hopefully this works and you receive remission and begin living and enjoy life!!!!
 
Good Luck!!!
 
: )  Robin
 
smurf  
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/27/2009 7:44 AM (GMT -6)   
Robin,

Can you tell me about the surgery? I see you just had it. Did you do the take down yet? How hard is this to live with and how normal are you once you are healed?

Michelle
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 4/28/2009 9:56 AM (GMT -6)   
The surgery was scary just b/c it is a major decision and situation...you're having organs removed and totally changing your digestive system!!!  : )
 
You know, after experiencing the UC pain, staph infections, open wounds, etc. the surgery was not all that bad.  I had some pretty pitiful pain management by my surgeon, so make sure you are well cared for in that area.  : ) 
 
Believe it or not, I opted to surpass the j-pouch and go for the permanent ileo.  Why you may ask, as I am 28 and have many life experiences still go...the j-pouch is wonderful for many, but I just was tired of taking chances that didn't pan out.  Each medication I tried was supposed to be 'the one' that put me in remission.  Nothing worked, so my heart was broken with each failure.  I was tired of the the urgency, lack of control, and the obsession of knowing what a bathroom was at all times.  The j-pouch is amazing for many people, but I really do not feel that having a bm is that important, especially after the two year flare and trauma I endured b/c of it.  I want complete and total control.  Also, after speaking with my surgeon about the statistics of this and that regarding the j-pouch, future surgeries, complications, pregnancies, etc., I was 100% sold on my permanent ileo.  I've been able to focus on my life, my family, my goals and ambitions, and never have I looked back.  I'm able to focus more intently on the moment as well.  Before I spent much of my energy and focus on hiding my pain and misery, but now I can fully live each moment and have no distractions.  It's absolutely amazing.  The ileo to me is not that bad at all, it's a very small price to pay to be healthy and have my life back.  Prior to the surgery I had three staph infections that all required surgery and open wound care, so that kind of forced me to be humble regarding my body image...not to mention my extreme weight gain and face change due to the 40mg of prednisone.  I was HUGE!!!  Of course prednisone allows you gain the weight, but not to lose it.  So, now I'm eating healthy and exercising!  Both things I could not do while sick.  I could not eat my favorite health foods b/c of the seeds, skins, nutrients, etc. and exercising was ridiculously painful!  My abdomin was constantly hurting and if I did anything strenuous I was in tears.
 
So, I know the life of pancolitis, zero energy, constant pain and the depression of watching your life just slip away and spend 90% of your day in the bathroom.  It's no way to live and I really had no other choice once the Remicaid failed.  To be honest, the first infusion did make some difference.  I had my 2nd eight weeks later and it did almost nothing.  The third was six weeks later, the fourth was four weeks later and the fifth was about four weeks after the fourth and was just to get me to my surgery date...but the last two did absolutely nothing.  They day of the infusions I always felt like Super Woman, but come the next morning I was back to the way I was before. 
 
Oh, and the best thing of being UC free?  I'm a full time Mommy.  I just posted an update on the ostomy board b/c I'm too busy to be fully active with the HealingWell family.  : )  I'm just with one client right now and putting off paperwork, but once I'm fully booked and back in school I simply won't have time to chit chat.  : )
 
If you have any questions or would like to speak privately you are more than welcome to email me.  : )
 
smurf  
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown

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