REMICADE!!!! PLEASE HELP!!!

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airikah
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/2/2010 1:25 PM (GMT -7)   
I was told I will be starting Remicade. I am hesistant to start Remicade, I have been told that they do not normally use an IV , they may at first but eventually it will blow my veins and my veins will be useless. Many nurses have told me they will most likely insert a Picc Line.
A Picc Line seems horrible to me, and I feel it would really restrict my daily life.

I am wondering who is on Remicade, AND if they have had the infusions via IV or Picc Line, and what side effects they have experienced? Doctors can tell you what to expect but I would like to know first hand accounts from people taking this treatment.

Thank you so much!


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 3/2/2010 1:55 PM (GMT -7)   
not sure why you would need a picc line. I take it through an IV just fine. No side effects.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal and Canasa for 2+ years - developed an intolerance
6MP - elevated LFTs after 100mg, no effect after 9 months
Currently: Remicade (Nov '09), and Paleo Diet. Not quite remission, but so much better!


airikah
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/2/2010 1:57 PM (GMT -7)   
Thanks! I was told because my treatment will be long term, So apparently that will damage my veins so they may be unable to insert an IV. I hope that isn't case!
Have Had Crohn's: 4 years
Currently On: Imuran and Pantaloc and about to start Remicade
Tried: Prednisone, Nexium

Age: 23 Female- Ontario, Canada


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 3/2/2010 2:31 PM (GMT -7)   
I've never heard of getting a PICC for Remicade. Veins can get tougher to get IVs after repeated needle use, but I alternate arms and areas of the arm to help prevent any of that.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


1asalsa
Regular Member


Date Joined Feb 2010
Total Posts : 40
   Posted 3/2/2010 3:16 PM (GMT -7)   
I started on Remicade in August, and it has been the only thing that has worked for me (besides Prednisone). Have tried mesalamine & Lialda, which only made things worse; and had to stop Imuran after 4 months because of elevated liver function tests. Everyone I have seen at the infusion center gets it through IV. After the first 3 infusions, they are usually spaced out about 8 weeks apart, so I don't really see how it would damage your vein.. Good luck; a lot of people have been helped by Remicade!

airikah
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/2/2010 3:21 PM (GMT -7)   
Have any of you experience bad side effects? I know it varies, but any information that can help prepare me would be appreciated!
I am a university student and I am worried that this will really make is difficult for me to continue my studies. Prednisone was so bad for me I had to withdraw from school....
Have Had Crohn's: 4 years
Currently On: Imuran and Pantaloc and about to start Remicade
Tried: Prednisone, Nexium

Age: 23 Female- Ontario, Canada


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/2/2010 3:34 PM (GMT -7)   
It is actually pretty easy to do this by IV, unless you have nurses who do not know how to do IVs well.
I was in my doctoral program when I had the lupus like reaction, and it is like walking thru chest deep snow after you had you feet, but it is doable you just look weird walking and you'll want a ride everywhere.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

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All that I am and all that I shall ever be, I owe to my Angel Mother.

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Make sure your suffering has meaning…


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/2/2010 4:21 PM (GMT -7)   
19 remicade iv's with no side effects.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/2/2010 5:52 PM (GMT -7)   
I took Remicade for 2.5 years. I have "difficult" veins but the nurse at the infusion center was a real pro and never had any trouble getting the IV in on the first try. The infusions never damaged any of my veins. I had no negative experiences with Remicade until the end when I developed lupus antibodies that caused my joint pain to escalate. I had to switch to a different biologic.

Remicade put my guts into remission very quickly. I think it important to say that my Crohn's was considered mild to moderate. The main reason I was started on Remicade was the destruction I was experiencing in my joints and spine from the ankylosing spondylitis.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


1asalsa
Regular Member


Date Joined Feb 2010
Total Posts : 40
   Posted 3/2/2010 6:19 PM (GMT -7)   
I've had some headaches and nausea from the Remicade, (usually the week after) especially the first 3-4 times, but that was really outweighed by the benefits of the drug. The side effects have been temporary and seem to be diminishing each time I get the infusion. The third time I also got hives 10 days afterward, which lasted for a couple weeks, but since then they have been having me take prednisone 2 days before and 2 days after the infusion, and I haven't gotten a reaction again. Am going for 6th infusion this week. Hope the infusions will keep working for a long time; side effects have been less than any other treatment I've tried.

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 3/2/2010 6:38 PM (GMT -7)   
the nurse will come in to see you as the solution drips in. as this is just like when you receive antibiotic drip or a saline drip. You can certainly keep an eye on the needle area to make sure it doesnt slip out and infuse into your arm instead of the vein and thats why they need to keep an eye on it. The nurse will usually put an extra piece of tape there so you be able to move your arm around within reason, if you want, during the couple hours it takes to drip in. Then after, you will have a bandaid and it will heal just as if you were pricked for when you give blood, as an analogy, it will heal back in a day or so. If you really want you can remove bandaid after 10 minutes but usually leave on the remainder of day. The time to next infusion is so long, like a couple weeks, you probably wont get any picc line as you say but anything is possible. I dont know where you get this huge restriction idea from as this is a pretty simple and you are only restricted for the time it takes to drip in. even then you can go to the restroom if you want to pull the tower with the medicine along, as it is on wheels.

airikah
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/2/2010 7:09 PM (GMT -7)   
Thanks for all the advice. medchrt1- I think you may have been misunderstood, I was referring to the picc line posing restrictions, which indeed it would. But I thank you for your information. It's helpful to know what to expect when going into something like this...
Have Had Crohn's: 4 years
Currently On: Imuran and Pantaloc and about to start Remicade
Tried: Prednisone, Nexium

Age: 23 Female- Ontario, Canada


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 3/2/2010 8:12 PM (GMT -7)   
I have been on remicade for 5 1/2 yrs so far, and I get an iv every time...no picc line.  My veins are fine.  Love the remicade...it gave me my life back...and I have no side effects.

SherBear69
Regular Member


Date Joined Dec 2009
Total Posts : 22
   Posted 3/5/2010 11:49 AM (GMT -7)   
Was on remicade for 5 years and had no problems with the IV starts. My veins aren't the greatest, but the nurses at the infusion centers are usually very good... at least, where I went they were mostly Oncology nurses and had very good IV skills.  The remicade didn't do any harm to my veins either.

What A Life
Regular Member


Date Joined Mar 2010
Total Posts : 116
   Posted 3/5/2010 12:03 PM (GMT -7)   
Remicade was great while I was on it... Always administered via IV with no problems whatsoever.

Beethoven's wife
New Member


Date Joined Jun 2007
Total Posts : 13
   Posted 3/5/2010 10:41 PM (GMT -7)   
I received Remicade infusions in 2003 and before starting them, my doctor suggested that I get a porta-cath.  It was an outpatient procedure by a surgeon and is in my left upper chest under the skin.  It has been a God-send since all of my veins seem to be nonexistent because of 8 surgeries for IBD and numerous other hospitalizations since 1982. By the way, I had absolutely NO side effects from Remicade and it put me into a complete remission.

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 3/6/2010 3:29 PM (GMT -7)   
Administered via IV with no problems. No side effects either. One year treatment.

Not feeling so good right now... ha. Looking foward to my next infusion!
 
-------------------------------------------
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 mg Imuran + Iron (sort of remission, not sure at all)
 


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 3/6/2010 6:37 PM (GMT -7)   
I have been getting remicade every 4 weeks for just under the last 6 years with a short hiatus to try cimzia. Never in that time have I had to go get a pic line and I have yet to hear someone that has had to unless there was something else going on. Remicade is tough on the veins and will cause it to get a little harder to get a line in down the line but they are not going to give you a pic line for something you get at the most every 4-6 weeks. Now if for some reason you were to have a pic line in, it is not that bad. I have had it a couple of times and it was the best thing I could have had done. It was so much easier to get my medicine and blood draws done.

LDR1109
Regular Member


Date Joined Dec 2009
Total Posts : 24
   Posted 3/18/2010 10:33 AM (GMT -7)   
I have been taking Remicade every 8 weeks since 1999. I do it via IV, and I have not had any negative side effects (at least none that my docs have found). My veins are a little hard to find at times, but it usually takes the nurse only once or twice to get me ready to go.

Good luck

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 3/18/2010 10:44 AM (GMT -7)   
I've never heard or seen someone get a PIC line just for Remicade. Seems unnecessary unless you're really really in bad shape.

I have terrible veins (esp when flaring and not eating!) but received it by IV for 2.5 years without a problem - mostly every 4-6 weeks. In an infusion center, you have nurses that work on chemo patients and others that have vein issues and they are PROS at the IV.

Never really had any side effects; it was a miracle drug for me.
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