First Remicade infusion next week!! Questions

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NickiM23
Regular Member


Date Joined May 2011
Total Posts : 48
   Posted 5/11/2011 4:18 PM (GMT -7)   
I'm a little nervous about getting my first IV treatment and I would love some personal experience on the issue. Did symptoms subside for anyone after the first treatment? Was anyone sick after?

superdoo615
Regular Member


Date Joined Feb 2011
Total Posts : 52
   Posted 5/11/2011 5:01 PM (GMT -7)   
I just had my first remicade infusion today.. everything went well and I got through it with no side effects at all. Not sure of its working yet but I haven't had a bm since. I went in.. I guess thats a start.. I hope evrything goes well for you if you decide to go with it
-------------------------------------
29/m/ny Dx. UC June 2009
Lupus? may 2011 (awaiting more test results but being treated for now)
Current treatment:
Lialda x3 - Align (probiotic) - Wellbutrin SR - v2 e cig - prednisone -hydroxychloroquine - vitamin D 50,000 units - Remicade

Have taken:
Asacol - pentasa - levaquin - Sulfasalazine - metronidazole - canasa - 6mp - effexor - percocet

ChefPatrick
Regular Member


Date Joined Sep 2009
Total Posts : 37
   Posted 5/11/2011 5:48 PM (GMT -7)   
there is a loading dose protocol for the drug. I didn't see any improvement until after my 4th infusion. but I was flaring very badly. do you have Crohns or Colitis?
its hard to say for some people remicade doesn't help at all. but the best way to know is to at least try it for 6 plus months.
31 year old male, diagnosed with Severe Ulcerative Proctosigmoiditis in 2006.
now dealing with left sided Ulcerative Colitis. on 50 mg Imuran
400mg Remicade every 8 weeks
Lialda 4.8 g daily
off steroids for now!!!
it gets worse before it gets better.
Also have had Costochondritis for the past year. (another inflammatory disease)
hoping for the best, expecting the worst.

NickiM23
Regular Member


Date Joined May 2011
Total Posts : 48
   Posted 5/11/2011 7:01 PM (GMT -7)   
Oh I hope mine goes the same superdoo. And it didnt put my signature in. I have UC.
Are all the infusions scheduoed the same? It seems i have one next week then beginning of next month then 3 weeks after that
And wow 6 months with no results would be torture. I'm really hoping its a super drug.
Chefpatrick what is a bad flare for you? How many BMs were you at a day?
I am also wondering what other people's doctors did for them if Remicade didn't work.
Diagnosed w/ UC at age 9. I've pretty much been on every diet and drug (except Remicade).
Remission from 2003-2010
**Current flare**
Medication: prednisone 20mg, cortiform enemas, waiting to get in for my first Remicade treatment
Considering a J-pouch....

jaygee8
New Member


Date Joined Mar 2011
Total Posts : 19
   Posted 5/12/2011 6:17 AM (GMT -7)   
I had two infusions of remicade and 8 hours after the second infusion I had such violent stomach pains for 3 hours that I refused to take any more. I also had cramps and runs between the first and second infusion. That's why I would very much appreciate finding out how to get cimzia...please? I sem to have very bad luck with all UC drugs. I am so discouraged.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5520
   Posted 5/12/2011 6:36 AM (GMT -7)   
       I saw a difference right after my first infusion, but then, I was also on prednisone at the time.  By my third infusion, I was off the prednisone and my symptoms returned.  I suffered with ulcerative proctitis.  The doctor stopped the Remicade and put me on Humira.  Tried that for three months with no change.  Had surgery last June.  I wish you well.  My story is only one.  Different meds work in different ways for everyone.  I have a friend who has been in remission for ten years due to 6MP.  I was on it for seven years and it never kept me in remission.

WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 5/12/2011 7:28 AM (GMT -7)   
I started remicade in July 2009. I'm going on two years on it.  It took aboout four to five infusions for all my symptoms to go away.  I was going about 10-15 times a day. I was diagnosed with severe UC thoughout my whole colon.  I am down to about 4-6 a day.  I have been at this since about my fourth dose.  I can hold it for awhile if I have to go.  I still have to find a bathroom right away but I can hold it until I find one.  Before remicade I had alot of accidents.  I had a scope in March 2010 and it showed no healing of my colon. My doc wanted to take me off it and I said to give me more time. I'm glad I did. I had a scope in jan. 2011 and my left side is completely healed and my right only has mild inflammation. So, it took awhile for my colon to heal.
 
Remicade has given me my life back.  I was getting to the point of never leaving the house and being really stressed out when I did. Now, I can do things and go places. I usually go to the bathroom about two to three times in the morning. (this is my worst time). Then once after lunch. I usually don't go the rest of the day. sometimes, I will go once after supper, depending on what I eat.
 
My first infusion I had chest pains. so, now I'm premedicated with tylenol and hydrocrotisone before my infusion.  I also get my remicade very slowly. I get there at 9 and don't get done until 2:30ish.  I also get heart burn(this is what the chest pain is) so I'm on prilosec. I will also get a little rash so I'm on zyrtex, daily.  Otherwise, I'm good. 
 
I wish you the best of luck.  I hope it works for you.
 
Oh, when the remicade doesn't work anymore. I will try humira and then surgery unless something else comes out.
On remicade since July 2009, Upped my dose in August 2010 to 7.5kg
Currently taking:Calcium Citrate, Vitamin D and Vitamin B12 shot(monthly, myself), Zinc, Magnesium, Zyrtex, Prilosec, Fish Oil, Levothyroxine, and a Multi Chewable Vitamin
Had a scope on 1-11 and my left side is completely healed and my right side has some mild inflammation and ulcers. The remi is working!!!!!

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2838
   Posted 5/12/2011 8:04 AM (GMT -7)   
Remicade worked for me immediately, and I have had absolutely no side effects.

Don't be nervous, be excited!!
I strongly believe it helps to think positive, and expect it to work. If you don't it probably won't.
If you expect nasty side effects, you will probably get them.

I go once in the morning, sometimes once in the evening but that usually depends on what or how much I eat.
49 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 (Humira denied) and doing great~ learning what normal is~ wow

NickiM23
Regular Member


Date Joined May 2011
Total Posts : 48
   Posted 5/12/2011 8:15 AM (GMT -7)   
Thanks for the info! I feel a little better. I'm normally extremely positive about all my treatments but after putting off Remicade for so long and hearing all the horror stories and studies about it I'm just not as excited for this one. Also I'm getting worried about work and maybe hoping a little too much that Remicade will be my answer. I am so fed up with all forms of treatment and ruining the rest of my body with the meds to fix my colon.
Diagnosed w/ UC at age 9. I've pretty much been on every diet and drug (except Remicade).
Remission from 2003-2010
**Current flare**
Medication: prednisone 20mg, cortiform enemas, waiting to get in for my first Remicade treatment
Considering a J-pouch....

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5520
   Posted 5/12/2011 9:07 AM (GMT -7)   
     I was surprised my GI doctor took me off Remicade so quickly.  When my symptoms returned after the third infusion he told me I had built up antibodies to it.  I believe he was a tad scared to place me on it from the beginning.  He pushed it for two years prior but years ago I worked in a lab and tested positive for TB.  However, before starting Remicade the test was negative and my doctor thought that I had a false positive back in the 60's.  He never admitted the fact, but I think he was still a bit hesitant and as soon as I became symptomatic again...boom..off the Remicade.  I really had high hopes it would work as I did with the Humira.  Oh well. 
     From what I have read on these posts, it seems like Remicade works better for those suffering with the ulcerations in the colon.  Mine never traveled further up but stayed in the rectum.  My doctor said the proctitis is stubborn and more difficult to treat.  Unfortunately, they have to remove the entire colon when they take the rectum.  All I had was minor diverticulosis in the colon.

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 5/12/2011 2:24 PM (GMT -7)   
I had no big issues after my first infusion however I did throw up once after. After my second infusion I felt a change within days and felt as though I had my life back. However my surgeon then took my off the Remicade cos I was doing so well and he didn't really want me on it anyway. My symptoms returned and so I had a 3rd infusion but unfortunately I reacted in a negative way to it...it was nothing major - just mouth ulcers, hot sweats etc, but it was enough for them to know my body obviously doesn't like it and so I was not allowed anymore infusions.
 
Try not to be scared about it...I've not heard any horrendous stories about it, just ones similar to mine. It seems that so many people have got their life back since starting on Remicade and so they know it was the right decision for them. Give it a go without thinking too much about the side effects etc and hopefully you will get into remission :)
24 y/o female from UK dx with UC (Proctitis) Jan 08. Never fully been in remission, resistant to all meds apart from Pred and Infliximab. Also dx with IBS. Proctocolectomy+pouch surgery w/ temp loop ileostomy 9th April 11.
Currently taking daily:
Spasmonal x 3, Cyclizine x 3, Tramadol x 6, MSR (slow-release Morphine) x 4, 60mg Seroxat (anti-anxiety), Multivitamins

superdoo615
Regular Member


Date Joined Feb 2011
Total Posts : 52
   Posted 5/12/2011 3:18 PM (GMT -7)   
Day 2 after my infusion ... I still have the d but I only had to go once this morning and once after lunch. No urgency just felt like I had to go .. I feel so much better and I hope I can get rid of the d with my next infusion... I'm glad I did it so far.. I just hope I don't get sick off the second dose like I see from other posts .. but for now I'm doing great so I'm gonna enjoy it... I hope yours goes well and be sure to update after your first infusion.. maybe you'll be one of the lucky ones who slip in to remission after first dose ;)
-------------------------------------
29/m/ny Dx. UC June 2009
Lupus? may 2011 (awaiting more test results but being treated for now)
Current treatment:
Lialda x3 - Align (probiotic) - Wellbutrin SR - v2 e cig - prednisone -hydroxychloroquine - vitamin D 50,000 units - Remicade

Have taken:
Asacol - pentasa - levaquin - Sulfasalazine - metronidazole - canasa - 6mp - effexor - percocet

NickiM23
Regular Member


Date Joined May 2011
Total Posts : 48
   Posted 5/15/2011 3:26 AM (GMT -7)   
Thanks again for the responses. I'm actually kinda excited to have my first infusion. I just want my life back!
And I'm def calling Monday morning to ask about taking some sort of preventative measures for heartburn. Just in case : )
Superdoo how are you feeling?
Diagnosed w/ UC at age 9. I've pretty much been on every diet and drug (except Remicade).
Remission from 2003-2010
**Current flare**
Medication: prednisone 20mg, cortiform enemas, waiting to get in for my first Remicade treatment
Considering a J-pouch....

superdoo615
Regular Member


Date Joined Feb 2011
Total Posts : 52
   Posted 5/15/2011 7:28 PM (GMT -7)   
Hey nicki.. well Saturday was a bad day went about 6x from around 8am - 12pm .. not sure what brought it on but after lunch I felt better and today I only went 3x all day... I'm still on loading dose so I sort of expect to be up and down .. but even with this I can honestly say its a lot more calm since I had the infusion .. thanks for askin about me and keep me posted on how you make out
-------------------------------------
29/m/ny Dx. UC June 2009
Lupus? may 2011 (awaiting more test results but being treated for now)
Current treatment:
Lialda x3 - Align (probiotic) - Wellbutrin SR - v2 e cig - prednisone -hydroxychloroquine - vitamin D 50,000 units - Remicade

Have taken:
Asacol - pentasa - levaquin - Sulfasalazine - metronidazole - canasa - 6mp - effexor - percocet

NickiM23
Regular Member


Date Joined May 2011
Total Posts : 48
   Posted 5/15/2011 7:39 PM (GMT -7)   
Well I'm glad to hear its going good for u! I'll def be posting once I get my first infusion. I might actually be going into the hospital tmrw and maybe starting then. I went 21x yesterday and I can't seem to get past being nauseus and pain today. Maybe going to the hospital would be best. Idk.
But congrats on your 3x's today!! Woohooo below five is amazing. Lol
Diagnosed w/ UC at age 9. I've pretty much been on every diet and drug (except Remicade).
Remission from 2003-2010
**Current flare**
Medication: prednisone 20mg, cortiform enemas, waiting to get in for my first Remicade treatment
Considering a J-pouch....

NickiM23
Regular Member


Date Joined May 2011
Total Posts : 48
   Posted 5/24/2011 8:43 PM (GMT -7)   
So I was able to avoid the hospital. My first infusion was this past Thursday and did take OTC heartburn meds first and it helped. The nurses in the Remicade room were awesome. I took an immodium before I went so I wouldn't have to run all the time. It def helped. Unfortunately I had really bad chest pains and my right arm hurt so bad. It was apparently an allergic reaction and had to have benadryl and sometime of steroid pushed. I dont remember the steroid because I was so outve it. I had even taken my prednisone right before I went. The days after my infusion I was horribly nauseus and had the worst stomach cramps. They put me on pain meds all weekend. On the plus side my BM numbers are down, but Ive had a few accidents. Hopefully my next infusion wont be so difficult. And I'm def feeling better.
Diagnosed w/ UC at age 9. I've pretty much been on every diet and drug (except Remicade).
Remission from 2003-2010
**Current flare**
Medication: prednisone 20mg, cortiform enemas, waiting to get in for my first Remicade treatment
Considering a J-pouch....
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