Waiting to start Remicade. Any advice from other users?

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mysonhascrohn
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/20/2009 12:22 PM (GMT -7)   
Hello everyone,
I'm a new comer on this forum.
As a mother of a beautiful 17 year old son with Crohn's D, I am in need of feedback from anyone who is on Remicade.
 
He's had Crohn's diagnostic in 2007, has been on Purinethol (6-mercapt) for 20 months and had nice remission for almost as  long. Unfortunaltely, Purinethol was not working anymore, so he started Prednisone again in April but so far, that hasn't helped.
 
Last week, his GI recommanded going on Remicade. I read about it and don't know what to think... As you can imagine, I want my son to feel better but don't want him risking getting any of the frightening side-effects.
 
Any of you doing ok with remicade? Your story would really help...
 
Thank you!
 
French speaking mummy seeking for help and advice.
 
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/20/2009 12:27 PM (GMT -7)   
You might like to click on the "medications" link in my signature. Sorry about the dodgy formatting, but the links should take you to some of our best discussions on Remicade and other medications.

All the very best to you and your son, and welcome!
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


mysonhascrohn
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/20/2009 1:16 PM (GMT -7)   
Thank you very much Ivy for the link you sent. I will look at it very closely.

Information about all those medications is useful. But the purpose of my posting was also to hear from any patient who might still be using or have tried Remicade. I think that forums are a great way to hear directly from people living with a certain situation.

I work in a health field myself and I'm quite used to go on Medline to read about medical conditions and health studies and protocols.

Thank you to anyone who went through Remicade infusion and can tell me how it has helped them.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/20/2009 1:24 PM (GMT -7)   
Once you get past the general information in the HealingWell Resources, the links will take you to our best discussions on Remicade etc. This is where you can find patients' personal stories.

We get so many people asking for information about Rem and Humira etc that our members are getting tired, and tend to be less forthcoming in replies on basic issues, which is why I think you should start by looking at the links I've provided.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/20/2009 1:27 PM (GMT -7)   
There are alot of stories on there too. Plus you can use the search engine in the upper right hand corner of the page to get more individual questions, but I also have a question for you. How does your son feel (pain/tiredness)? How many times a day is he going to poo?
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

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

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


boweskara
New Member


Date Joined Jul 2009
Total Posts : 5
   Posted 7/20/2009 1:45 PM (GMT -7)   
Hi, my husband has been getting the remicaid infusion for going on 2 years now and it is WONDERFUL!!! He can tell when he is due for his next infusion and sometimes makes him tired after having it but I cant speak more highly about this medication and what it has done for him! Best of luck

mysonhascrohn
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/20/2009 1:59 PM (GMT -7)   
Thank you Boweskara.

Hearing good stories is so helpful!

Having a sick child is very painful as it is with a spouse, I imagine.
But we have decided to stay positive and optimistic about this situation.

My son is ready for something else; his mind is set for a remission, as so is mine!!
Friends and family are there but it's heartwarming getting to share with people who know. THANKS SO MUCH!

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 7/20/2009 2:00 PM (GMT -7)   
Hi, I was on Remicade for 5 years it was a wonderful drug. I am now on humira which is almost
the same drug. I have been in remission for almost 6 years.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,,Celebrex and Humira. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


almost30inMI
Regular Member


Date Joined Jul 2009
Total Posts : 61
   Posted 7/21/2009 6:19 AM (GMT -7)   
I have been on remicade since March. I understand your concern with this drug. However, it has been great for me. I became steroid dependent and would have horrible flare ups when I tried to get off medications. The remicade has allowed me to stop taking 6mp and asacol. I have been in remission since May (after 3rd treatment). I have found that if I stay awake for the 3 hours I feel ok but if I fall asleep during treatment, I feel very tired the rest of the day. I hope this works for your son.

Diagnosed with Crohns at 17. Been on and off pred, entocort, immuran, asacol. Currently on Remicaid every 8 weeks and gotten off all other medications!!


mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 7/21/2009 8:21 AM (GMT -7)   
I've been on Remicade since 2002. I've been in remission for a long time, and I rarely have anything but symptom free days.

Keep 2 things in mind as you read about this drug:
1: People don't often post just to say everything is going fine. They often post looking for help for a problem. You will see more negative posts about Remicade. That doesn't mean that it's a bad drug, just that some people have experienced issues.

2: ALL DRUGS HAVE RISKS. I've heard it said that if they tried to get asprin approved today, it wouldn't get approval due to it's many risks. All drugs have side effects and risks, and Remicade isn't any different. A lot of what you read on in the drug makers warnings are there to protect them in court. Of course there is always a chance of a reaction, but there is always a chance of slipping in the shower, getting hit by a meteor, etc. Remicade has been on the market for a long time, and they know a lot more about it now than when it first came out. When I first went on it, there was a lot of concern about cancer risks. My GI's opinion now is that the risk is so slight, and the benefit so great that it's worth it. Keep in mind that your son's GI will be watching him very closely while on this drug, so if something does start to happen, the doctor will be right on top of it.

Like I said, I've been on it since 2002, and enjoy many long periods of symptom free living. I work full time, I travel, I go camping, and I've done all this while raising a son and enjoying life. I understand your concerns, but don't pass up the opportunity due to the chance of a reaction or side affect. I wouldn't hesitate to put my son on it if he needed it.

It's a hard decision, though. I understand that. I hope you and your son find the drugs that work for him.
Matthew McKenna,
Joey's dad.

Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


pen1
New Member


Date Joined Jan 2009
Total Posts : 18
   Posted 7/21/2009 3:30 PM (GMT -7)   
I have been taking Remicade transfusions for seven months now. It is going well for me. I go to an Infusion Center at my hospital and everyone is very good.

My first two transfusions caused me a bit of anxiety but not any more. I feel good that I have my blood checked at the same time as the infusion to make sure my counts are close to normal.

I am feeling fine and have no symptoms although I have been told my case is severe. I had a bowel resection in Feb and had Remicade before and after with no problems at all. I also t ake 50 mg of Imuran per day.

Knock on wood - but feeling great!

atctackett
Regular Member


Date Joined Oct 2008
Total Posts : 114
   Posted 7/22/2009 11:29 AM (GMT -7)   
I have been on Remicade since October (at that time I was in a major flare and had two resections). I started out getting infusions every 6 weeks, but have been able to space it out to every 8 weeks now. I have some mild fatigue for a couple of days after my infusion, but then it resolves and everything is good. I have had no symptoms since I got out of the hospital in November. I have been taking 6MP for about a year. Initially with it and Pentasa, I did not see any improvement in my symptoms. My wife had many more reservations about me starting the remicade than I did. She had done the looking online and found all of the risks of cancer and lupus. She shared them with me and we dicussed it. I was ready to try any medication that would help. I hope that you and your son are able to find the right combination of medications to control his situation.
Shawn
 
Diagnosed with Crohn's in July 2005. 2 Bowel Resections in 2008.
Currently taking Pentasa 1000 mg 4X/Day, 6MP 100 mg/day, multivitamin, Lopressor 100 mg/day (Blood Pressure), Remicade IV every 8 weeks, Omeprazole CR 40 mg/day, Lomotil BID, Immodium BID, Cholestyramine 2 grams daily


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/22/2009 2:44 PM (GMT -7)   

Hi!

I see you got tons of reply's. I just thought I share my experience with Remicade. I was on it for about 1 and 4 months.

Started off working amazing, was able to add things to my diet, like milk,green vegy's.But about 8 months after starting it. I got horrible joint pains. so they brought me to every 7 weeks, ok helping with the joint pains, but keep getting worse, closer to the time need the infusion, waiting a week in horrible horrible pain. so they brought me to every 4 weeks. No relief after they did that. My crohn's got supper worse, and I went crippled. What happend sometimes is your body starts to get use to it. I also found out because Remicade isn't all human, part mouse. People especially with Crohn's you can get antibodies from the remicade which is where the joint pains and cripplness came from.

This is just my experience. Remicade can be your sons 'med' and work for life for him. I was though ask the doctor about a med that could avoid the antibodies. I.e Imuran, MTX (I don't know the others)

I've just start humira, which is allot like remicade,and I am not crippled anymore (in less then a week with the help of imuran) and the pain is almost all gone.

I hope everything works out for your son! good luck

xoxo


24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 7/22/2009 2:52 PM (GMT -7)   

Hi,

I totally understand your concerns about Remicade. Reading all the info scares the daylights out of a person. I was on Remicade every 4 weeks for 3 1/2 yrs. We found it just did not last long enough to go 6-8 weeks. It is very much a drug that should be taliored to a person' s needs. Initially they thought Remicade stayed in the our systems long er than it actually does. I had a reaction on my third infusion which is typical for one to happen if it will. They stopped my infusion and gave me IV soluable medrol & benadrly. We waited a bit and they resumed the infusion at a lower rate and I did just fine, From that time on I was given pre-meds & had no problems. My gi stopped my Remicade because it lost its punch with me. I developed a fistula last year and had to go back on Remicade. This tme around it made me feel pretty sick afterwards, I did it for several months. I now have Lupus induced by Remicade, but I do not regret ever using Remicade. I started Humira this year and its another very good drug.

Have your son take somthing to do either watch a movie, read just something to pass the time. I also suggest snacks, we tend to get hungry while there. I do not know if his is being done at the hospital or an infusion center. I hope it helps your son.


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 7/22/2009 4:21 PM (GMT -7)   
I do not regret  trying remicade either. Everything you've said I agree.
I do wonder tho, your doc put you back on remicade? I was told my the infusion clinc and my gi that if you get off of remicade for a few months and longer, your not suppose to be able to go back on remicade, supposly it can be poision to your blood once you've stop. Could maybe be why it didn't agree with you the second time around.
I'm happy to hear Humira is working for you as well.
Great advice, movies and snacks!! they usualy gave me a blanket and pillow I would just crash for 3 hours.They did give me the pre meds as well, to avoid side effects. Never got any (besides the crippling arthritis)
 
Stay well! xoxo
24 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira.

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