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Starting Remicade

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Ulcerative Colitis
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Posted 7/20/2010 5:45 PM (GMT 0)
Just got out of the hospital for the 3rd time since being diagnosed with UC in July 2008... imuran and asacol are no longer working for me and I've become steroid dependent. I will be starting Remicade on Thursday...can anyone tell me what to expect? I'm nervous...
Posted 7/20/2010 5:56 PM (GMT 0)
I have never taken it myself, but I have a friend who is a pharmacologist. He tells me that taking Remicade is safer than it used to be because they monitor people taking it much more effectively to spot problems before they become critical.

That made me feel a little better about taking Remicade if I ever have to. It is definitely safer to take long term than steroids.
Posted 7/20/2010 6:08 PM (GMT 0)

I've been on it for over a year straight and haven't suffered any side effects personally.  It's true that there are not long term studies on it, but it saved me from surgery.  I was in a horrible flare, and now I am completely normal.

Depending on whether you do it in a doctor's office (what I do), or a hospital (what I've done before), it's fairly uneventful and easy.  It hasn't worked for everyone, but I owe my colon to the drug.

Good luck!


Posted 7/21/2010 3:54 AM (GMT 0)
I used Remicade for almost 5 years and thought it to be a wonder drug. It alleviated all of my symptoms and had very few side effects.
However, I developed anti-bodies to the drug as well as drug induced lupus and many other complications.
I think the key to Remicade is to insist they keep up on your blood work - and educate yourself about the key indicators and markers in the CBC results.

Make sure you clearly watch for infections, even mild ones like frequent colds, sinus problems. Also, any arthritic symptoms, cold fingers or toes (vasculitis), etc.
I ignored way too many signs that Remicade was causing problems for me and ended up in the middle of a medical nightmare.
In retrospect, had I paid attention and talked with my GI most of the problems could have been avoided.
Good luck,
Posted 7/21/2010 4:27 AM (GMT 0)
I just had my second infusion last Thursday. I went in and they gave me Tylenol and Benadryl (Which made me very sleepy!-It was nice)
Then they started the infusion and I sleep the whole time! It was great!
I think that your first few times will take longer because they really want to monitor you afterward.

Everyone is different but I have noticed a few headaches and that I have been really tired at times. I have had a few brief waves of dizziness and nausea. Nothing too major. I appreciate the comments about really watching yourself for infection and staying on top of blood tests. I will make a point to do this and remember that this drug is by no means a cure. So far I feel it has really helped and I look forward to doing my best to stay healthy with diet and really taking care of myself.
Posted 7/21/2010 5:44 AM (GMT 0)
UC in UT - you are scaring me to death about Remicade. It worked for me like a wonder drug the first two times I had the remission induction series, no side effects at all. This third time around it's not doing anything, and I just got out of the hospital. I'm on prednisone now and it's helping, but prednisone has so many dreadful side effects.

I just switched health insurance (my COBRA ran out), and the prescription benefits in my new insurance are much worse. There is a high deductible, and I pay a percentage of the drug rather than a flat fee. I just got a call from my insurance company about "fulfilling a request from my physician". I have a sickening feeling that they are going to ask me for a vast amount of money - those Remicade treatments cost $3400. I'm not working, and I can't work right now - not even at my own business. So I'm in a panic.

After reading what you have to say about Remicade, and given the fact that I appear to have developed antibodies to it, perhaps I'll forgo the third infusion in the remission induction series. I'll call my doctor tomorrow to discuss.

Post Edited (canope) : 7/20/2010 11:47:23 PM (GMT-6)

Posted 7/21/2010 11:58 AM (GMT 0)
Canope- There is help if you cannot afford your infusions. There is a rebate program through remistart(accessone) and also copays.org can help you as well. Also you may not of built up antibodies as it can take up to four infusions to fully help your UC. Talk to you doctor about the concern of antibodies...he can run blood tests to check for antibodies.


Dankins19-

I was extremely nervous to start the Remicade but it has been great so far. I am feeling the best I have in a long time. The only side effects I notice are I get headaches after the infusion for a few days and I am tired and achey for a day or so after my infusion. Good luck to you!
Posted 7/21/2010 12:22 PM (GMT 0)
Glove - Thank you VERY much for the information about financial assistance with Remicade. I will look into this.

In the past, I've done three Remicade influsions for a remission induction - second one at two weeks and third at six weeks. I'm due for the third on August 3. The first time I had it, I saw improvement after the first treatment. At the time I had horrible lower back pain (I get inflammation in my back when I'm flaring sometimes). The back pain was gone almost immediately after the first infusion. The second time I didn't feel better quite as fast, but still pretty fast. This time I'm not seeing any improvement from Remicade yet after two infusions and many weeks. So I feel like its effectiveness is decreasing, but I'll talk to my doctor. He always gives me prednisone in my IV before the Remicade to prevent the antibodies.
Posted 7/21/2010 12:25 PM (GMT 0)
By the way, does anyone know how you subscribe to a thread so I find things again? I can't figure it out.

Also, though I click "Notify me of postings", I never get notified.

 

Posted 7/21/2010 1:45 PM (GMT 0)
So I figured out how to get notified (no quick replies). But I can't figure out how to edit my signature. The old one keeps getting displayed. Blah.
Posted 7/21/2010 7:34 PM (GMT 0)

canope said...
UC in UT - you are scaring me to death about<strong></strong> Remicade. It worked for me like a wonder drug the first two times I had the remission induction series, no side effects at all. This third time around it's not doing anything, and I just got out of the hospital. I'm on prednisone now and it's helping, but prednisone has so many dreadful side effects.<BR><BR>I just switched health insurance (my COBRA ran out), and the prescript<strong></strong>ion benefits in my new insurance are much worse. There is a high deductible, and I pay a percentage of the drug rather than a flat fee. I just got a call from my insurance company about<strong></strong> "fulfilling a request from my physician". I have a sickening feeling that they are going to ask me for a vast amount of money - those Remicade treatments cost $3400. I'm not working, and I can't work right now - not even at my own business. So I'm in a panic.<BR><BR>After reading what you have to say about<strong></strong> Remicade, and given the fact that I appear to have developed antibodies to it, perhaps I'll forgo the third infusion in the remission induction series. I'll call my doctor tomorrow to discuss.

Hey Canope,
My intention was certainly not to cause immediate alarm and fear so I apologize for that. I have been one of those "lucky ones" that seems to develop some kind of problem with almost every UC Med ever prescribed - that is why 3 months ago I elected for surgery as it became my only option. That does not mean it will happen to everybody.

However, I am currently working with an attorney related to a possible personal injury claim against Centocor (maker of Remicade and subsidiary of Johnson and Johnson). It seems that they were remiss in adding several different warnings to the Remicade label throughout the years - until recently when the FDA required additional warnings. Some of these warnings are related to the possibility of developing lupus, vasculitis, etc. I am not a "lawsuit happy" kind of guy but jury's around the country are agreeing with plantiffs that certain risks were not clearly outlined to patients. Had they been outlined clearly many patients would have been required to have additional (and very specific) blood work done when on the drug to check for specific markers in the blood.

Below is a link to one example of a lady that developed lupus, like I did, after the use of Remicade.

I post this not to cause fear but to share in my experience. If you look at the number of people on Remicade versus serious side effects you will find my case to be quite rare. Unfortunately, I traded UC and my colon for a life with Lupus.


http://sanantonio.injuryboard.com/medical-malpractice/texas-jury-awards-194-mil-in-remicade-lawsuit.aspx?googleid=209260
Posted 7/21/2010 8:03 PM (GMT 0)
Thanks for the additional info, UC in UT. As it happens, I may not be able to get any more Remicade treatments because of the poor prescrpition coverage in my new insurance. I simply can't afford it.

Between my co-insurance for the drug and my co-insurance for the administration of the drug, it would cost me $2118.12. I don't have that - my ability to work is quite impaired at the moment. With my old insurance (COBRA), it would have been just a $20 copay - quite a difference. Basically, BC/BS has decided they would rather pay for a colectomy than Remicade.

Given the terrifying side effects - no matter how rare - perhaps it's for the best. I'm getting better on the prednisone, though I'd rather not stay on it. I'm already getting moonface, though I've tried to be so careful to limit calories. Probably I haven't been good enough about the salt. Or maybe there is nothing I could have done.

 

Posted 7/22/2010 8:47 PM (GMT 0)
I'll be getting my 15th infusion tomorrow, and Remicade has worked well for me colon-wise. I prefer not to be one organ less :) I didn't get into remission right away, but I did after 4-5 infusions and the right combo of rectal meds. I have had some side effects: chest pains after some infusions, joint pain for a few months last year, and migraines right after the infusion and more headaches recently. Slowing down infusion rate and taking Zyrtec a week before and after the infusion has gotten rid of the chest pain and joint pain. I'm hoping that increasing the Tylenol at the time of infusion will help with migraines/headache.

UC in UT: Did your lupus not go away after stopping Remicade? I thought that if it was drug-induced, it would eventually disappear after stopping the medication.
Posted 7/23/2010 4:48 AM (GMT 0)
Hey Bookworm,
The answer to your question "did the drug induced Lupus go away" is a yes and no answer for me.
I have been off Remi for 15 months now and much of the symptoms have started to resolve (and some of the blood work is beginning to normalize). However, my RH factor remains positive as do my Cryoglobulins and Cryofibrogins. My ANA's are positive while my double stranded ANA's are negative.
Soooooo...the outlook is sketchy as to the final outcome. However, I can say that with cessation of the drug my symptoms, and general health, have greatly improved. But I still get terrible rashes all over my back (lupus purple-like rash) and terrible fatigue at times.

BTW- Positive ANA's - especially over a 1.5 year period of time is almost always a positive diagnosis for Lupus - but not always so hope springs eternal.

I guess only time will tell.

Good luck to you,
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