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unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/23/2008 3:01 PM (GMT -6)   
Okay... Doc just informed me that if my symptoms weren't alot better middle of jan, then he wanted to talk Remicade with me at that time.  Have heard about it and seen alot of it posted on here.  Does anyone have any specifics?  Upsides and down sides?  I definately want to hear about the down sides I guess.  This idea scares me.  I have been feelin better and thought I was headed toward remission, I guess Doc doesn't think so.  Have been tryin to eat gluten free for over two weeks, and am on day two of the spinach/ sumflower thing.  Hopefully one of these will kick in SOON so I can aviod this remicade situation.
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 12/23/2008 3:43 PM (GMT -6)   
I've been on Remicade for nearly three years. For me, there has been no down side, just a symptom-free remission after being in a constant flare for almost five years after I was diagnosed. My last C-scops showed a completely healed colon.

Remember, you don't have to accept any treatment you don't want. Listen to what your doctor says, and then you can make your decision. It may be that something else will work for you. Or, you may just decide you'd rather put up with the symptoms you're having than to try a new med. It's up to 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.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/23/2008 4:48 PM (GMT -6)   
     Do a LOT of reading about it.  My GI doctor has been pushing Remicade for the past two years.  I read where if you were exposed to the TB virus you should NOT have Remicade and I was exposed to it years ago.  My doctor knows about it but says there is a pretreatment of some sort and then I could receive the injections......ah...no thanks.  I am also aware that doctors get kick backs from the drug companies...so beware.  Oh...my doctor also pushed for this 6MP I have been on for the past five years.  It is supposed to keep me out of flares, but I still get a flare every year.

62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 12/23/2008 4:55 PM (GMT -6)   
Have a horsehoeing client who is on remicade. I asked her same question I asked here and she said she loved it. She's on it for a severe form of arthitis. Her only side effect ( down side ) was she seemed to catch every cold that came around. Oh and the cost... She said hers was like $2200 a visit or some such. Didn't realize it was going to be that expensive. I have insurance but geesh. Not sure how much of that bill its going to cover.
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/23/2008 4:57 PM (GMT -6)   
     My friend's sister took it for RA too and it worked wonders for her.  Just do your homework.  Your insurance should cover some of the cost...find out.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 12/23/2008 5:56 PM (GMT -6)   
My neighbor takes it for RA and she put my mind at ease a lot about it when I was thinking about trying it a couple of years ago. I was nervous, but I have tolerated it very well and my October colonoscopy showed my colon healed all but the last few centimeters. I am now on Rowesa and/or Canasa for that the final bit of healing.

I am exposed to a lot of icky stuff as a dog groomer but I am careful about hand washing, and I remind all family member to wash up as soon as they get inside. I haven't been ill since I started the infusions.

Some people complain of tiredness on infusion days, but hat may be if they had to take Benedryl with the infusion. I don't require any premeds and feel fine when I finish. I enjoy listening to Podcasts and working on needlepoint projects during the few hours of my infusions. I go every six weeks.

I was pretty close to deciding on surgery before the Remicade helped me. My insurance covers the entire $6,000 cost. My insurance also covers Lialda ($535 month, I only pay $25) and my other meds as well. I am sure my insurance company HATES me ;-)

Meesh
46 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!!
12 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; 11/08/08; 12/20/98; 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


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/27/2008 5:12 PM (GMT -6)   
I've had four treatments and it's helped my situation a little. I think it is a great medication if it works for you, but unfortunately my UC just doesn't seem to want to go into remission. However, I was told by my medical professionals that many people see improvements after the third infusion.

I hope you take your doctor's advice and do what he/she feels is best, as there are limited medical options once you've hit a certain point.

I wish you luck!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
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.


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 12/27/2008 5:44 PM (GMT -6)   
Robin, I only saw modest improvement for my first five infusions, my flare was really stubborn. My GI said since I was showing some improvement and tolerating it well, and my insurance covered it, to give it more time. My colonoscopy in October, after 2 years and three months of infusions every six weeks, showed my colon well healed all except for the very last few centimeters.
Keep trying it as long as you are showing any improvement at all and tolerating it well.
46 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!!
12 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; 11/08/08; 12/20/98; 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


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/28/2008 6:38 AM (GMT -6)   
Meesh...
I would like to wait around and see better results, but my immune system has been seriously compromised.  I'm experiencing horrible side effects such as abscesses and staph infections in various parts of my body (right shoulder, bicep and heel).  I've had open wounds that require packing since the middle of October.  I'm really glad you have had great results, but it's just not a path I'm willing to stay on.  : )  I've been in a flare practically for two years, and with the additional complications I'm becoming tired...I'm ready to rid myself and my family of this disease.
 
: )  Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
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.


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 12/28/2008 2:29 PM (GMT -6)   
Robin, sorry you're not doing well. Like I said, IF you were tolerating the Remicade, and obviously you aren't. Are you considering surgery? Before the Remi FINALLY kicked in for me I had pretty much made up my mind to go that route -- the people on the ostemy board and j-pouch.org and all the research I had done on the surgery led me to believe that it would be better than being sick all the time. This time last year I was in a very bad way myself, in a nearly two-year flare, prednisone-dependent, anemic. My mind was so set on the surgery I was slightly disappointed that my colon had the all-clear when I got my last colonoscopy. I am pretty sure that at some point I will be having my colon out, but with the economy the way it is now would not be a good time for me to close down my business for two months for the surgery and recovery, so thank goodness the Remicade is buying me some time.

Look into the surgery -- it is considered the "cure" for UC and it sure seems that those who have had it only have one regret -- not having done it sooner.

Take care Robin, feel better!

Meesh

cra43
Regular Member


Date Joined May 2008
Total Posts : 172
   Posted 12/28/2008 3:19 PM (GMT -6)   
Unclebubba,   My son started his Remi after 10 years of colitis.  He had the first 2 and gets his 3rd on Jan. 16.  He doesn't see remarkable changes yet, but is willing to wait.  His doctor took him off the Asacol, and he only takes 3 of the  6MP's  50mg. a day.
He takes no other vitamin supplements, but what he gets in Cherrios, banana's and his other food.  He eats lots of protein and dairy products too.  He has no problem with the Remi.  Feels fine after the infusion, in fact seems rejuvinated.  Took the flu shot,,,no problem.  Doesn't get colds etc.  Never did. Was always very healthy till the colitis hit.  I think his immune system worked too well!  He has no insurance because he has his own small business, and no insurance company would accept him due to his colitis.  So,  he applied to PAP,  and he qualified for free Remicade.  He just pays to get it infused.  He would love to get insurance one day if they ever let people with pre-existing conditions have it.
Good luck to you. 

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/28/2008 7:15 PM (GMT -6)   
Thanks Meesh...

I am super jealous that you have had a change of situation and heart. And our mind is made up...we're ready. I have a job that where I work in the home of my clients and my husband can drive me to work every day, if needed...and I really do not want to be down and out too long...but you can understand the constant frustration and energy drain of having a flare for two years. I'm just so tired. I really liked the information and support from the j-pouch.org site as well. I loved that someone told me that the moment they woke from the surgery they felt different...the pain was from the surgery, not the UC. Wow, huh?! As I feel the discomfort day and and day out I just think to myself and someday there won't be anything there to cause the discomfort! I love that notion. : )

Anyway, I am just so extremely happy that your situation had a positive outcome...thus far, right?! : )

I appreciate your kind words of encouragement and support.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
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.


Winter
Regular Member


Date Joined Sep 2005
Total Posts : 210
   Posted 12/28/2008 9:44 PM (GMT -6)   
I have been on Remicade for 2 years with no side effects. I am a teacher & get exposed to all kinds of bugs but I don't usually get one. I did take Benedryl at first which made me feel awful but my GI told me that I could take Claritin instead. So I feel fine after my infusion. I also get my infusions at home so I can relax during that time.
Lialda 3 tablets  daily
Remicade every 8 weeks
Folid Acid daily
Methotrexate 3 times a week
Align Probiotic
 


tutorgirl2008
New Member


Date Joined Aug 2008
Total Posts : 3
   Posted 12/29/2008 9:01 AM (GMT -6)   
I am kind of new here but have tried the Remicade thing after nothing else worked and it did work until it made my seizures worse so they had to end it. I recommend doing your research and talking with other people you trust (i.e. family members) about it to get their opinions on it as well as your G.I.'s. But also, if you do agree to go forward with it, make sure to take something with you to pass the time as well as a snack, as I forgot on my first infusion and was bored and sooo hungry lol.


dx with UC in January 2006
went into "magical remission" until November 2006
started Asacol and Azathioprine- neither helped
started PredniSONE (60mg decrease by 10mg every 2 wks and it quit helping at 30 mg) in September 2007
Got a new G.I. doctor in May of 2008- he stopped the Asacol and recommended Remicade.
Started Remicade in Nov 2008
Remicade worked dramatically but was messing with my seizures badly so it had to be stopped. (Dec 2008)

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/29/2008 9:18 AM (GMT -6)   
Interesting reading these Remicade anecdotes. I've had three infusions and I improve a bit starting a few days after each one and then start regressing again within a couple weeks. Plus, I just got floored by a stomach virus that came and went within 48 hours but has flared up the colon as a lovely parting gift. I'm now putting surgery back on the front burner, as I had told myself that if Remi isn't a clear cut remission maker/ pred ender for me within a couple months, I'd know what to do. But, as usual, fear of taking such a permanent step keeps me dancing in the "just one more month" mode.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
15ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 12/29/2008 10:28 AM (GMT -6)   
Probiotic, the usual recommendation is if Remi hasn't worked by the fifth infusion it probably won't. Keep your fingers crossed, it may still work. If not, I've always felt thankful that I have that ultimate step of surgery available to me for a cure.
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.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/29/2008 2:09 PM (GMT -6)   
Yeah, at least if I go the surgery route I will know I have tried almost everything, from all sorts of diets, to TCM, to all sorts of supplements and probiotics, to two types of worms and worm eggs (TSO and hookworm- the former helped but not enough for the sheer cost), and now to Remi. I may not have ticked off every possible box (Refaxamin might be worth a shot before going under the knife, maybe?), but it might take the second half of my lifetime to try every possible modality fully, and eventually we need to start enjoying life again. I think they may move up my next infusion a bit and/or try increasing the dose... we shall see.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
15ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 

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