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Remicaid. What do you think?

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Posted 10/2/2008 11:02 AM (GMT 0)
Dear friends,
2 weeks ago I joined the forum after being released from the hospital. I was there due to a severe flare up of UC and while there I was receiving Salumedrol and then was sent home with prednisone. I took the prednisone for a day but then obviously wasn't strong enough and ended up in the ER that very evening with severe bleeding and extreme abdominal pain. So.... I have been back in the hospital ever since. They hope to release me tomorrow.

This time they gave me the salumedrol as well as a heavy dose of Remicade. Has anyone else had the Remicade before? I am curious to see what others have thought about it, if it has worked, etc. My doctors say that it is great and so far I've seen improvement. My worry is getting home again and suffering another downfall and ending up right back in here. Next week I'll have to come back to the hospital for more Remicade and then I'll have to return every 3 months for more. I am also going home with prednisone again. By the way, anyone know a good way to prevent the "moon cheeks"?

Just looking for input. Thanks!

Katie
Posted 10/2/2008 1:27 PM (GMT 0)

I've been on Remicade for 2 1/2 years, and have been in remission for that whole time. I flared for five years solid, and nothing else stopped it, not even steroids.

BTW, the usual schedule is an "induction" round at 0, 2 and 6 weeks followed by infusions every 8 weeks. Be sure your insurance will cover it, because it's very expensive ($8000 - 10,000 per treatment depending on your weight and the infusion center charges.)

Good luck, and I hope it helps you as much as it has some of the rest of us! Keep us posted.

Posted 10/2/2008 1:38 PM (GMT 0)
i've been on Prednisone since August and I don't have "moon face". I work out quite a bit and also watch my sodium intake. Prednisone has the tendencay to make your body retain extra water (moon face), so avoid those deli meats at all costs!
Posted 10/2/2008 1:58 PM (GMT 0)
$10 or $20 grand an infusion?! Yikes- are you sure? I thought it was was only $1000 each time. Hopefully I am at least 80% covered- have to check. At 80% I could certainly handle $1000-2000 but not $10k a plop, Working on switching to this med now- I am assuming Aetna will cover at least most of it for UC.
Posted 10/2/2008 2:17 PM (GMT 0)
I've taken Remicade for a few years and it is the only thing that could help me. I have had some flares here and there due to extreme stress but all in all it has worked. If you get that sick, it is worth taking. Read up on it though so you are informed of the side effects. I have gotten infections that the docs couldn't fix and have had weird illnesses when I am stressed like Shingles (I'm 34 years old.) I just got out of the hospital from a lung infection they couldn't fix and they felt the Remicade is what made my body get it so bad and not be able to heal. Your symptoms are bad so the side effects probably outweigh the potential medication side effects. Just try to wash your hands often, excercise and take vitamins.
Posted 10/2/2008 2:33 PM (GMT 0)
$8-10K is the amount. Perhaps the $1000 would be your co-pay? But I would think a total out of pocket maximum would kick in after two or three infusions.
Posted 10/2/2008 2:39 PM (GMT 0)
I've had 5 Remicade infusions and according to my c-scope it has healed almost all of my colon. I'm not in remission yet b/c the 4cm of proctitis is being stubborn.

I can't remember how much my Remi infusion costs but the makers of Remicade do have a rebate program if you have to pay co-pay.

Question for Judy--Did you have morning urgency before you started Remicade? If so, do you still have that problem?
Posted 10/2/2008 4:51 PM (GMT 0)
I had terrible urgency all the time, as well as tenesmus part of every day (that lovely feeling that you have to go NOW, but you really don't have to go at all.) I can wait to go to the bathroom now, but when the time comes that it moves down against the sphincter, I have to get to the bathroom quickly. I attribute that to lasting effects from 5 years of flares, D and straining.
Posted 10/2/2008 7:47 PM (GMT 0)
Hi Katie,

I am in a similar boat I was recently in the hospital for 19 days getting iv salumedrol. I had my first remicaid infusion in while I was in. I am now out of the hospital on just oral prednisone 40mg's a day. I became anemic so I had two transfusions. I have had a second remicaid treatment but the doctor had to order it as a medical procedure because my insurance would not cover it as a medicaton. Luckily I am approved through Feb. I have heard of miracle remissions and and have a friend whose daughter has been in remission for 4 years with remicaide. I am hoping it works for me but I guess it takes a few treatments. Hopefully it will work for you. Good thing we have insurance it is really expensive. A PPO copay is several hundred dollars.
Posted 10/2/2008 8:06 PM (GMT 0)
Hello,

     I have had UC for ten years.  Hospitalized when first diagnosed, suffered off and on flares, put on 6MP about five years ago, it did NOT keep me in remission.  This past April I suffered a severe flare and had to be hospitalized for ten days in May.  My GI doctor and his associate have two conflicting  opinions on whether I am a candidate for Remicade.  My GI doctor has been pushing it for two years.  However, his associate, who took care of me while I was hospitalized said ABSOLUTLEY NO REMICADE.  I will give you the reason.  In the 60's I worked in a hospital lab and came in contact with patients with TB.  Before going on a European vacation in 67 I had a TB test and it came out positive.  I had a chest xray which was negative.  I do not have active TB but it lies dormant somewhere in my system.  Remicade can activate the TV virus and it can kill.  Apparently my GI doctor feels they can give me drugs to counteract this, but I am no guinea pig, thank you.  He said the prednisone could also activate this virus.  Well, I have been on and off prednisone for the past ten years.  Not happy about it, but it is the only drug that helps me achieve remission.  However, I think I am now prednisone dependent.  I am now tapering AGAIN.  Seems like the longest time I can go without it since April has been two weeks at a stretch and then boom...the bleeding, urgency, diarrhea comes back.  He started me on 40 mgm last Thursday and I am now tapered to 30.  I see my GI doctor Monday. 

     This is not to say Remicade isn't the drug for you.  I have read many good reports and some bad ones in this forum.  I have developed osteoporosis from the prednisone.  I also have high blood pressure, which was off the wall in the hospital.  Too bad the myriad of doctors in and out of my room while I was hospitalized couldn't come up with the idea to place me on a water pill, which my heart doctor did last week.  This has kept my blood pressure well under control, along with the Benicar and Toprol.

Posted 10/2/2008 11:36 PM (GMT 0)
Thanks for all of the information guys. I get to go home from the hospital tomorrow with a PICC line and I come back next week for a second round of Remicade. I'm not sure yet of the cost. But I'm feeling better. They're tapering down my TPN as we speak so hopefully I can go home and stay hydrated. I'm going home with 40 mg. prednisone, lialda, and a coming infusion of Remicade next week. I am nervous about going home but feel ready. If I'm counting correctly I think I've been in the hospital for 20 days total..... hope to not be back anytime soon!
Posted 10/2/2008 11:36 PM (GMT 0)
Thanks for all of the information guys. I get to go home from the hospital tomorrow with a PICC line and I come back next week for a second round of Remicade. I'm not sure yet of the cost. But I'm feeling better. They're tapering down my TPN as we speak so hopefully I can go home and stay hydrated. I'm going home with 40 mg. prednisone, lialda, and a coming infusion of Remicade next week. I am nervous about going home but feel ready. If I'm counting correctly I think I've been in the hospital for 20 days total..... hope to not be back anytime soon!
Posted 10/3/2008 2:20 PM (GMT 0)
Hey Katie; good luck with the Remi. I've been on it for about 3 years now and haven't had any side effects at all; as a matter of fact, I just had my infusiuon yesterday and feel better than ever today. It also seems to give me energy! And maybe the fact that I get a good nap in helps too! I'm down to one hour infusions so the whole process takes about 1 1/2 hours; they set me up and then I get saline in the IV while they mix the Remi in the pharmacy. Anyway, just thought I'd pop in and let you know that Remi has been a great med for me. Take care, and let us know if you have any other questions.

Posted 10/3/2008 9:51 PM (GMT 0)

It helped me get into full remission before my surgery, sadly had to stop for 8 months - and up to my third infusion.  Hope this one helps - it is taking me longer to get into remission than the first time.

Love to all here

bob

Posted 10/3/2008 10:20 PM (GMT 0)
Anyone know how long you have to have these infusions?  What are the long term side effects?  I know my GI doctor said he would rather have me on Remicade than this prednisone, but his associate said Remicade is definitely out of the question for me because of my TB exposure.
Posted 10/3/2008 10:29 PM (GMT 0)
It's my understanding that the current recommendation is that people with positive skin tests should be treated with anti-TB agents before getting Remicade.

Remicade is intended to be a maintenance medication. You take it every 8 weeks for as long as it works, to keep your remission. There have been a very small number of people who developed lymphoma; these were all on Remi and immunosuppressants at the same time. Additionally, it does increase your risk of infections, including some which can be serious. Like other medications, only a small percentage of people have serious side effects. It's a gamble any way you go with UC and other autoimmune diseases.
Posted 10/9/2008 2:42 PM (GMT 0)
ComedyDork, I just read your posting about Remi. My doc's are getting ready to place me on it and now I am worried about the cost. You mentioned a rebate? Can you please go into it for me. I would be greatful to see what I am up against. Thank you...........
Posted 10/9/2008 3:11 PM (GMT 0)

to many questions, here's the link: http://www.centocoraccessone.com/patientassist/patient.jsp

Posted 10/9/2008 6:36 PM (GMT 0)
I'm going into my 3rd Remicade IV tomorrow and it's been helping so I would say it's worth it. I don't know what kinds of financial help they give but I do know they do offer something if your insurance doesn't. Like a PP said, you can ask your doctor to submit the claim a differnt way to get it covered. That's what we did, processed it as a treatment and I only pay a $25 co-pay for an office visit.
Posted 10/10/2008 12:37 AM (GMT 0)

Hello everyone. I have had UC for eight and half years now. I am going to be having a surgery the 15th of this month. My GI had recommended Remicaid at first. I have been on almost every medicine out there without any success, but I was really considering remicaid. My husband and I looked into it and found that this medicine not only drops your imune system, but it can increase chances of other disease beside TB if the other diseases run in you family. I my family, there is plenty of cancer. After researching, my husband and I talked to the doctor about our feelings on the treatment. He later agreed with us that Remicaid could be dangerous for me rather than help me.

My advice is for anyone considering to take this drug to really look into it and consider your family history too.

Posted 10/10/2008 2:17 AM (GMT 0)
Great thread. I am very close to starting Remicade. For me, since nothing else is working, it's become fear of the unknown (long term use of Remi if it does work) vs. fear of the finality of losing the colon. And adding to that is the knowledge that, with 20 years of UC, it seems likely I'll eventually lose the colon in any case, i.e. should I do it while I am young and my body can recuperate faster from surgery? Anyway, I have decided I'm going to give it a shot ASAP, and if it works great, then great, enjoy life again while it does and think clearly about surgery instead of making decisions while in constant 24/7 pain. Not to mention get off pred. If it doesn't work, then the decision is finally made for me.
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