Remicade question

[ZIGGY]

Hi

I am new on this site and forum.

I have started on Remicade 6 months ago. I have read lots of posts on general side effects. My question is ... excessive hunger ... and I am not on Prednisolone either ! this seems to effect some people too, but having lost nearly 6 stone in weight (having been asked by my Consultant to do this) I have put on nearly 40 pounds back on since starting this treatment. Not impressed.
I am seeing my Consultant tomorrow , hope she can explain a few things.



ZIGGY

Diagnosed; 1985
Hemicolectomy 2002
Been in remission until Dec. 2011.
On Azathioprine, Remicade, Metformin.

 

[SarahAnne]

No information on that regards, but hope you find an answer from your consultant. I've never had excessive hunger with the Remicade, most of the time I've been on it (until recently) I've had the opposite problem and been severely nauseated. That wasn't the Remi though, just the affects of the stricture.

Hope you get some answers today. Good luck!

 

[rygon]

Im on remi and had no problems, although i have noticed my appetite has returned no im much better. Maybe its just come back to before and you just dont realise due to being so ill for such a long time?

unfortunately it also means ive had to exercise to keep the fat off me

 

[SarahAnne]

stylistgurl ~ It really just depends. Probably not the answer you wanted to hear

In my personal situation, Remicade worked great, but I still required surgery. I haven't had a problem with fistulas in ages. I did have scar tissue at the site of my previous surgery that formed a stricture. Remicade can't do anything for strictures or scar tissue. I've been in remission since the strictured areas were removed, I don't take anything else for the Crohn's except Remicade.

I've never heard a doctor say that once you start Remicade you have to stay on it for the rest of your life. I have heard other members on this forum state that it is working so well for them that they want to stay on it for life, and there is the chance for your body to develop antibodies to the Remicade if you go off of it.

I was on Remicade back in 2001, and had my loading doses and then 3 more infusions, all 8 weeks apart. I was pre-medicated, didn't have any problems, but stopped taking the drug when I became pregnant and Crohn's symptoms disappeared.

Started having symptoms a few years later, new doctor in a new town. Restarted Remicade, NO pre-meds. First infusion I was fine, second went into anaphalytic shock. Too scared to restart. I only saw that GI for a short time. Next GI tried to manage my CD with 6mp, Imuran, Humira over a period of years as I got sicker. I brought up the Remicade and he agreed to order it if I wanted to try it again. He wrote orders to have me pre-medicated 20 minutes before starting the infusion. They run the drip very slow and increase the rate very slowly, monitor my blood pressure, etc. I've never had another problem, not even a single tiny hive.

Sorry for the long reply, just wanted to point out how drastically different everyone's situation can be. I suppose I'm one of the lucky ones since I could stop and start two different times.

Are your problems from inflammation, scarring, fistulas, or something else? Different meds and procedures work differently in each situation. For me, I would have died without the surgery. The Remicade is helping me maintain remission right now. Love them both!

 

[stylistgurl]

Thank you Sarah for replying! I have been sick with worry over this choice. Long story short, I have had problems most of my life, but wasn't diagnosed until two years ago. I went into the hospital w what I thought was appendix issue, ended up being infection in my TI, hospital and colonoscopy and blood wk confirmed CD. I was put on pentasa, antibiotics, and entocort. After that I tried to find a GI close to me, but never found one that fit untill recently, after 6 mos of entocort and 2 years of pentasa, 2nd colonoscopy showed it got worse, instead of one area now there are three, and bc I'm newly diagnosed I'm not sure what each medical terms are called. He was able to get through the first two swollen bits with a balloon, but the third he could not get through at all. After the procedure I was so high from the medication from the procedure all I gathered through the conversation was that it was very serious and I needed to do blood wk and vaccinations and start remicade infusions, or have surgery. So I'm trying to figure out what all my options are. The biologics medication I have read about scare me. I also wk full time and have three children. So I need something that will work for my family as well. I have been crying ever since I got the news. I know there are people on here way sicker, I'm glad I'm not alone. In my life I know no one who has anything like this.

 

[SarahAnne]

I've been where you are before and it is very scary. When I was diagnosed I had Crohn's involvement in over 50% of my small intestines. That all happened when I was 19, everything was confusing and I was drugged up most of the time.

I wouldn't push you one way or another. The biologics work really well for some and not at all for others, some have severe side effects and again others none at all. Sometimes surgery is the only option left, but that has risks as well.

My advice would be to be as informed as possible. Don't worry yourself even sicker over the decision, weigh your options and then choose what you think to be the best. Ask your doctor about the benefits and risks to each.

I feel for you, I have two children, but I was diagnosed at 19. They've only known a mom with Crohn's disease so it isn't anything different for them. My mom was diagnosed with Chronic Fatigue when I was a teenager and I remember it being a confusing time. I don't know how young your children are, but if they are old enough to understand, talk to them about it a bit. Children know when something is going on, but if adults don't discuss it with them, it can become scary.

Wishing you the best, feel free to ask me any questions, I know it's isolating but you're certainly not alone.

 

[stylistgurl]

Thanks do much Sarah! My name is Sarah too! Its funny it's actually Sarah Ann! I aoprecaite your response! I'm a hairstylist and I was doing a client today who happened to be a pharmacist, and I had a question which now may make remicade no longer an option. I was exposed to Hep b when I was younger before I got married. So I'm a carrier of the Antigin but can't give it to someone and don't have symptoms, so my client said that I may not be a candidate, anymore. So now I need to go back to my GI, and figure it all out. She also said remicade she thought would be the better of the two if I could still do it.
Have you heard anything, about that?

 

[SarahAnne]

Lol, that's funny about the name, I have actually met two others as well! One Sarah Anne and another Sara Ann. It must have been quite the popular combination back in the day!

In regards to your question, I found this on Remicade home page....

HEPATITIS B REACTIVATION
TNF inhibitors, including REMICADE®, have been associated with reactivation of hepatitis B virus (HBV) in patients who are chronic carriers. Some cases were fatal. Patients should be tested for HBV infection before initiating REMICADE®. For patients who test positive, consult a physician with expertise in the treatment of hepatitis B. Exercise caution when prescribing REMICADE® for patients identified as carriers of HBV and monitor closely for active HBV infection during and following termination of therapy with REMICADE®. Discontinue REMICADE® in patients who develop HBV reactivation and initiate antiviral therapy with appropriate supportive treatment. Exercise caution when considering resumption of REMICADE® and monitor patients closely.

Here's the link for the website... http://www.remicade.com/hcp/

I would definitely talk to your doctor and bring this up before starting Remicade.

 

[stylistgurl]

Thank you for doing the research on that!! Holly cow, very scary! I will talk to my doctor! I will keep you posted! I can't tell you how much you have helped!

 

[chrisnsteph1022]

Yes! I've gained 30lbs since starting Remi. And I was at a healthy weight. I never lose weight with Crohn's (HOW can I go 15-20x/day and NOT lose weight? It really blows my mind!).

As for the other question, I'd try any drugs before going to surgery. Once it's gone, it's gone.

 

[tots]

I STILL have my headache, my first treatment was last Monday.
Its not really bad it just wont really go away!


Lauren

 

[kllyeve]

I started Rmicade at the end of December and I have also gained about 20 ish pounds. Probably because I can eat without pain. With the intestines healed, we are probably absorbing more of the calories as well. I don't feel like I am over eating or extra hungry either.

I had headaches with the first 2 infusions - especially the second one. I took some of my tramacet and layed down. It took about 3 days for the headache to go away. Third infusion - no headaches and none since.

 

[scoutfinch]

I wouldn't say I have "excessive hunger" while on Remicade, but I definitely have an appetite - whereas I have little to no appetite when I'm flaring or when the Remicade starts to fade.

I LOVE those moments when I have an appetite. I basically eat whatever I want and it's just heavenly. Sometimes I'll overeat, but dealing with "overeating pain" is nothing compared to actual Crohn's pain. I usually gain a few pounds at first, but then lose them again when the Remicade fades. I'm naturally thin - very thin when flaring - but I wouldn't care if I were fat as long as I were healthy.