Remicade success

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canadianiron
New Member


Date Joined Nov 2015
Total Posts : 15
   Posted 11/25/2015 10:31 AM (GMT -7)   
I have been floating around this forum for some time. Decided to join as I am starting Remicade next Tuesday... I am extremely nervous about starting Remicade with all the possible side effects. Does anyone have good success with Remicade? Someone i know that my age, 24 Flat lined during first remicade treatment. She survived. Is it really worth? or was that extremely rare?

Also, my flare is almost in remission. Still some frequent bowel movements and small amount of blood every once and a while. Iron level is really low . Ferritin = 11. Seems like my body is having trouble to absorb iron which is making my memory horrid and extreme fatigue.

Is it okay for someone to take remicade while not in a bad flare up? during summer my flare up was bad, to the point I was loosing decent amount of blood. Since I started Cannabis CBD/THC oil few months ago my symptoms have subsided a lot. But still noticeable ,just a lot less worse and more manageable.

Current symptoms ; small amount of blood, which just started again (probably because im stressing), pass stools 4-6 times a day, extreme fatigue and poor mental clarity, anxiety.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15430
   Posted 11/25/2015 11:12 AM (GMT -7)   
Oh gosh, we have had SO many successes. You will do great. I have NEVER heard of anyone having a response quite like your friends, that is extremely rare. I've been here for years and that's the first I've heard of such a severe response. I think 4-6x a day can warrant remicade. If you have tried the other available treatments without luck and you're still struggling, better to get it headed in the right direction than to allow it to get a foothold going in the wrong direction.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete!

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11047
   Posted 11/25/2015 11:25 AM (GMT -7)   
Remicade is the only uc medication to get my uc into remission. I'm in endoscopic remission, no sign of active disease. Before remicade, I was steroid-dependent and having accidents.
Moderator Ulcerative Colitis
John
, 37, UC in clinical remission
Rx: Remicade @5mgs/kg/8wks + 6MP @50mgs

You cannot spell sUCks without UC.

canadianiron
New Member


Date Joined Nov 2015
Total Posts : 15
   Posted 11/25/2015 11:45 AM (GMT -7)   
Thanks for the replies. Puts my nerves to ease to hear the success. Got diagnosed in March this year. Kind of brushed it off like it was nothing. Probably because I was in denial and didnt want to believe I had something wrong with me nor for the rest of my life. Reality hit me a few months ago, making me go on short term disability to get everything under control including my stress.

Currenty on mezavent 2.4mg per day. I did Prednisone for 8 weeks when my flare up was severe over summer. Didn't do much, until i started the CBD cannabis oil. Hoping with the both, (remicade) it will put me into complete remission.

duelling carl
New Member


Date Joined Nov 2015
Total Posts : 16
   Posted 11/25/2015 12:33 PM (GMT -7)   
Remicade was my biggest downfall. I got every side effect and no benefit of the drug. The side effects stayed in my system for many months and basically made me bed bound. I know people that are on and have been on remicade for years and havent had one flare up since. Good luck though with your treatment. I hope it works for you!
27 male diagnosed at 6 with UC dealing with proctitis since June 2012
Apriso .375mg X 4 daily
Nexium 40 mg daily
mesalamine enemas 1 at night
Hyperbiotics PRO-15
Been on and failed with
Uceris
Pentasa
Prednisone (multiple times)
Canasa
hydrocortisone
remicade (got all side effects and no relief)
humira (reversed remicade side effects but no relief)
cimzia (was on when proctitis started)

Contentprof
Regular Member


Date Joined May 2014
Total Posts : 412
   Posted 11/25/2015 8:16 PM (GMT -7)   
Remicade is very effective for a lot of people! Lots of success stories here.

My advice: Stay positive and be hopeful about it. Envision the infusions as moving you forward on your path to healing. When I started the infusions, I asked the nurses about what they've seen with other patients on remicade & I felt less scared when they told me. I think my confidence in the drug (and knowing the odds) helped get me into remission with it more quickly.

Only a very small % have adverse reactions or intolerable side effects.
If you are concerned, you can read the medical publications that report on the cases. I was in that small % of adverse effects, and I stopped it. But I still have no regrets about taking it. It got me into remission, despite causing some other problems (which I've since recovered from). I have never heard of anyone experiencing what you described - and I read a lot about it while they were diagnosing me. If you are scared, you can get the infusion at a hospital (instead of a stand alone clinic or at home). That way, you know you'll have other medical experts nearby to take care of you.

Hoping it works well for you! If it doesn't, you can try other approaches.
UC for >15 yrs. For flares I use Cortenemas, Prednisone. Allergic to mesalamines (hives, fever), 6mp (fever), Remicade (stopped after 6 mos due to joint pains, Anti-TNF Induced Lupus, neuropathy). Now taking Entyvio.

ki-wi
Regular Member


Date Joined Jan 2015
Total Posts : 426
   Posted 11/25/2015 8:37 PM (GMT -7)   
When it's working, it works very well. It can take a while for the doctors to find the sweet spot of the right frequency/dosage for you, so it may not be plain sailing right away (though for some, it is). It's the only drug to have given me a taste of what life was like before UC.
M, 36. Pancolitis dx 2013. Asacol 4.8g, Azathioprine 100mg, Remicade (7) 320mg. Getting there.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/26/2015 6:58 AM (GMT -7)   
I'm another Remicade success story. After flaring and "simmering" for 18 years, Remicade is the only thing to tame my beast. I've now been in remission for 3 years. I get no side effects other than a normal life :)
SHERRY
Moderator-Allergies/Asthma, Alzheimer's, IBS, Co-moderator-UC
Diagnosed Left sided UC '92 - meds: Apriso, Remicade (6mp discontinued due to neuropathy)*Unable to tolerate ALL mesalamines*, IBS, Diverticuliar Disease, Fibro, Sacroiilitis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry eye syndrome and allergies controlled by Zyrtec.

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4530
   Posted 11/26/2015 7:07 AM (GMT -7)   
I never had any side effects at all when I was on Remicade.....it just didn't help me. It's got a pretty safe track record so I wouldn't worry too much. My mom has been on it for the past 9 years to treat her rheumatoid arthritis and she hasn't had a single issue. Good luck....hope it works.
Marianne- age 47
DX Pancolitis in 2005. Family history of UC. Symptoms started shortly after I quit smoking
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs.Very happy j- poucher

TotesMagotes
Veteran Member


Date Joined Mar 2013
Total Posts : 767
   Posted 11/26/2015 7:34 AM (GMT -7)   
I love remicade. It got me into remission. The only issue I've had is a mild postpartum flare but I know that without the remicade I would have been sooooo much worse. No side effects so far. And I look forward to my infusion...quiet time.

A couple infusions later and I am moving back into remission...knock wood.
Diagnosed Nov 2012 after birth of first child, Left sided UC
Remicade - 10 mg/kg every 7 weeks, 3 Lialda
Enemas, VSL#3 DS, prenatal vitamin, vit D, biotin, fiber

You gotta learn to dance in the rain

Dikid
Veteran Member


Date Joined May 2015
Total Posts : 2235
   Posted 11/26/2015 8:54 AM (GMT -7)   
So far it's been awesome for me. Rescued me from jail ( ok I'm being dramatic- the hospital) many of us needed to raise either frequency and or dosage
20 year old female
Diagnosed with severe uc on 4/27/15
Remicade 10 mg/kg
Imuran 50 my
calcium, slow FE, and vitamin d

canadianiron
New Member


Date Joined Nov 2015
Total Posts : 15
   Posted 11/30/2015 4:32 PM (GMT -7)   
Thanks again for all your replies. I go in tomorrow...

Is there a certain limit you have to stay on remicade for? The reason why I ask is because I'm on short term disability. But do not know how much longer I will be with that job for, so I wouldn't be able to afford remicade if I don't have any benefits.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15430
   Posted 11/30/2015 4:36 PM (GMT -7)   
People stay on it indefinitely. I would definitely get something worked out so you know your insurance will cover it when you're off short term disability.The manufacturer of remicade has a program to help with copays. There may also be a PAP program for the uninsured.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete!

miestomaga
Regular Member


Date Joined Jun 2015
Total Posts : 164
   Posted 11/30/2015 4:52 PM (GMT -7)   
I had my third infusion 2 weeks ago

I would say it is working a little. I'm getting better. It takes some time though.
M, 35, diagnosed January 2015

Asacol HD, 3.2g daily prescribed(up it to 4.8g when flaring badly). Not sure if it does anything. GI mentioned discontinuing soon.
Azathioprine 75mg a day
Remicade, first infusion 10/6/15 (5mg/kg), three down now, starting to feel better

Vit D, Metamucil(3 glasses a day), Curcumin, Fish Oil

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 11/30/2015 5:08 PM (GMT -7)   
One thing I didnt think about when I was young was that this disease does not go away. Unless you do something as drastic as remicade to change your body response, or have surgery, you will continue to have years like the one you just had, possibly forever.

With Remicade, I am in complete remission and living a normal life.
53 year old female attorney, diagnosed UC/pancolitis 1985.
Asacol for 20+ years with Prednisone & Rowasa for flares (But nothing since Remicade). Food sensitivity test by Naturopath showed wheat/gluten, other intolerances, helped some.
Remicade started April 2009 and was doing GREAT. Switched to Humira in March - July 2015 with job change, but it didnt work. Back on Remicade, plus Lialda.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/1/2015 9:09 AM (GMT -7)   
After six years of severe flaring from my time of diagnosis, Remicade brought me into remission. I've now been on it since March, 2006, and have been in remission that whole time. In nearly ten years of getting infusions, during which I've shared infusion facilities with hundreds of others, I've only seen one possible reaction during the infusion. Early in my treatment, the lady in the chair next to me complained of feeling a little breathless. The nurses checked her, and her blood pressure had gone down a lot. Her doc had them stop the infusion and administer a small dose of IV steroids. Within 15 minutes she was back to normal. They observed her for 30 minutes longer, then finished the infusion with no further problems. I've never seen anyone else react, so I'd have to guess this is extremely rare.
Thyroid forum moderator

Ulcerative colitis; 9th year of remission with Remicade. Inflammatory osteoarthritis; osteonecrosis from steroids. Grave's disease post-RAI and now on Levothyroxine. Type II diabetes induced by steroids. #ucsucks

canadianiron
New Member


Date Joined Nov 2015
Total Posts : 15
   Posted 12/1/2015 2:21 PM (GMT -7)   
Doing my remicade at the moment.

Thanks again, everyone. I might be accepted into long term disability with work. If so, I'll be able to continue the remicade and hopefully have the success you all have had

Also, did anyone e have success gaining weight back easily?

miestomaga
Regular Member


Date Joined Jun 2015
Total Posts : 164
   Posted 12/1/2015 4:55 PM (GMT -7)   
canadianiron said...
Doing my remicade at the moment.

Thanks again, everyone. I might be accepted into long term disability with work. If so, I'll be able to continue the remicade and hopefully have the success you all have had

Also, did anyone e have success gaining weight back easily?


I think once you get healed gaining weight back should be very easy. In fact, you might even gain too much weight.
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