Why is Remicade thought of as the Last Resort?

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ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/4/2007 8:10 AM (GMT -7)   
I've been doing a lot of thinking lately.

A few years ago, my doctor wanted to put me on Remicade but wouldn't because it wasn't FDA approved for UC yet. So I waited and waited.Then, when it finally was I wasn't quite "sick enough" for it. But I've tried nearly everything. Colazal, Asacol, Canasa, Entocort, Imuran, etc etc... Currently, all of the "maintenance" meds are too expensive for me at the doses I need to be on- all of them are almost $100 a month. And I'm steroid dependant. I've been on and off prednisone for 8 years and as a result I have osteopenia (discovered at age 19) and now it seems my potassium levels are permanently messed up and I have to take potassium supplements.

And I'm just sick of it. I'm sick of having to take a million pills that I can't afford and none of them ever work for very long, and then I'm put back on prednisone which in my opinion is worse than any of the drugs out there. Yet they're so quick to put us on that.
 
So what if Remicade has an "increased risk of cancer"? So does azathioprine. In fact, the azathioprine risk list looks almost identical to the Remicade risks. Maybe it's not. But really, everything in life anymore has a risk of cancer. Smoking causes cancer, being around smokers causes cancer, being in the sun causes cancer, washing your hair with shampoo causes cancer, eating food causes cancer, UC can cause cancer, everything can cause cancer and if I'm going to get it I'm going to get it. Maybe I'm a pessismist but why can't I take that risk if I want to? I'd rather look at it as taking the chance of getting BETTER for a change. That would be nice.
 
If you ask me, Remicade sounds pretty nice. And I think I'm ready for that next step. I'm tired of letting my UC run my life, it's been long enough.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
 
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 12/4/2007 9:20 AM (GMT -7)   
Hi Edie, I am so sorry you are going through all this. I have only been on pred for 3 months and I am about to have a meltdown. I am on Azathioprine now and do worry about the side effects, you just never know. I think remicade is a last resort b/c it's the newest approved drug and it is also very expensive and not all insurance companies cover it.

I hope you are able to find something soon to help you. I wish I could help out with additional information but I am still learning a lot myself.
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/4/2007 10:06 AM (GMT -7)   
Beth, sorry to hear about your troubles with prednisone. I definitely sympathize with that... I think prednisone should be a last resort! It's so terrible.

I spoke with my insurance company last night and they actually cover Remicade so that one infusion would only cost me $35 which is great. They have a "specialty" area for prescriptions that require IV and injections and they said all I'd have to do is get the doctor to fax the order to them and then mail out the medicine which takes 6-7 days. I thought that was interesting. But I called my doctor's office this morning and I have an appointment on the 18th to talk with my GI about it. I guess I will just have to wait and see how that goes...
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
 
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 12/4/2007 10:20 AM (GMT -7)   
I think your insurance company might be a little confused about what Remicade actually is. I really don't think it can be mailed, part of why it's expensive is I think it has to be mixed just before it's used.
I've been on it for a year now and it works really well, I too was unresponsive to the common meds.
It sounds to me like you're a prime candidate to get on Remicade at this point.
I do think you should talk to your GI about getting off Imuran though when you start Remicade. There has been research that has found a very small number of cases of a deadly form of lymphoma in people on Azathioprine and Remicade at the same time.
My GI switched me to Methotrexate this year to get me off of Azathioprine.
James
Current Meds www.myspace.com/gardenerjames

Asacol 4 tabs 2x daily
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
Omega-3 once daily
Tenth Remicade infusion Early December


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 12/4/2007 10:34 AM (GMT -7)   
In regards to Remicade, I'm under the impression that it's a "last resort" both because it is SOOO expensive (I drive out of state in order to get it at a cheaper rate; I think it's something like $2,500 an infusion) and because it is still relatively new and they don't know all of the long-term effects.

I noticed that you mentioned you are "steroid-dependent." I've been told that it is extremely dangerous to be on corticosteroids on/off indefinitely, and that when a person reaches dependency, it's time to talk seriously about surgery.

Best of luck, and I hope you feel better. Keep your chin up!
James

21 yrs old, diagnosed severe pan ulcerative colitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Remission since 4 July 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 8 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...
"God bless Remicade!"


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 12/4/2007 12:24 PM (GMT -7)   
My Remicade is mailed to the hospital and then the pharmacy mixes it. The remicade goes through out prescription provider - Caremark - and the co-pay is $18. Then the hospital that actually administers it charges about $500 for the infusion, of which I pay about $75. You might make sure you don't have to pay at both ends. I think it's considered the last resort because if it doesn't work there's nothing left except surgery -maybe Humira or something new to come down the pipe. Remicade has been a real lifesaver for me. Most people love it. Good luck.
Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade remission


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/4/2007 2:03 PM (GMT -7)   
GardenerJames, I had read about that result from being between the two meds... I will definitely stop taking the Imuran! It's pretty scary that the medications we have to take to feel "normal" can end up causing more damage in the long run than the colitis in general... Ugh. It gets so frustrating trying to decide whether the risks outweigh the benefits sometimes!
I think they said they mail in the powder form (since most pharmacies don't carry it on stock) and then the hospital will mix it for use.

Right now my current medical copays are great... $15 copay for virtually anything (but $100 per surgery and $50 per ER visit) and labs are free. So, oddly enough, it seems like Remicade might actually end up being cheaper than the regular maintenance drugs!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
 
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/4/2007 3:04 PM (GMT -7)   
I'm gradually stopping my Imuran also. But if I can't tolerate being off it, I look at it this way: If Remicade and Imuran give me lymphoma in then years, at least I'll have enjoyed the ten years. Before the Remicade, I was so sick I couldn't even have a life, much less enjoy it.

Remicade is mailed to my GI's infusion center, but it is shipped overnight express packed in a styrofoam cooler filled with cold packs. They mix it immediately before giving it- in fact, they start the IV and cap it off, then go mix the Remicade. The total charge for my infusions - infusion center charges, supplies, medication, etc. - is almost $4000. That's why it's the last resort drug. Unfortunately, it's one of the treatments that's driving health insurance costs up so high in this country. Almost makes me feel guilty for needing it.

Almost.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 12/4/2007 6:47 PM (GMT -7)   
Azathioprine didn't even work for me, so my GI had no qualms about taking me off it. I was on 175 mg and I weigh 150 lbs, and just said don't take it anymore one day and 3 days later I started methotrexate (you only take that once a week)
I didn't notice any effect from going off the azathioprine. I'm a little fatigued for a day or two after I take the methotrexate so I take it on Fridays and can enjoy a couple naps over the weekend :)
James
Current Meds www.myspace.com/gardenerjames

Asacol 4 tabs 2x daily
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
Omega-3 once daily
Tenth Remicade infusion Early December


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/4/2007 7:17 PM (GMT -7)   
James, I'm tapering mine slowly because I'm a big chicken. I don't make any sudden reductions in medication, but very gradual. I was in such a bad flare for so long, I'm paranoid about changing my regimen. I know it probably makes no difference, but I feel safer this way.

I think we all have our little rituals and talismans we use against this disease, eh?
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/4/2007 9:33 PM (GMT -7)   
Judilyn, how much do you typically pay for your infusions (if you don't mind me asking)?

From stories I've been hearing it seems you either pay hardly anything or it's way too expensive. I'm hoping I don't get hit with any unexpected charges for something stupid but I'm planning on getting that all sorted out before anything.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
 
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...


Colon Pow
New Member


Date Joined Nov 2007
Total Posts : 15
   Posted 12/5/2007 12:47 PM (GMT -7)   
Edie, sorry you're going thru this. I agree with you...as a matter of fact, I'm starting Remicade this Friday (Dec. 7th). I'm so sick of being sick. And I really feel that the meds I'm currently on aren't doing anything except make me feel worse. So I figure, what do I have to lose?

GardenerJames - I know that everyone's experience is different, but could you tell me if you had any side effects so far from the Remicade. I see that you're coming up to your 10th infusion. I'm anxious to know how you've progressed.
UC diagnosed 2002 (pancolitis)
Flare lasted 3 months

remission for 5 years

Recurrence Jan 2007

+ C.Diff (rt colon), Nov 2007 (tested neg all prev. times); left colon-severe u.c.

Asacol 1600mg three times/day

Prednisone 40mg every am

Mesalamine Enema (1000mg) @ bedtime

Librax, 1 caps b4 each meal and @ bedtime

Calcium/Vit. D

VSL#3

Starting Remicade December 7, 2007! Yippee!


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/5/2007 1:46 PM (GMT -7)   
Glad to know I'm not alone in my feelings :) I too often feel worse from most of the medications (such as Asacol). Sometimes I think maybe it has to do with the fact that we have a digestive disease and they make us take 12 GIANT pills a day! Or worse when they make us stick things up our already sore and irritated butts... Hmmm... Haha
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
 
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/5/2007 5:33 PM (GMT -7)   
Edie, my insurance covers my Remicade infusions, except for my $35 copay. A lot of health insurance does cover, now that it is FDA-approved for treating Remicade. If your insurance doesn't cover, the manufacturer has a program to help. I'm not sure how it works. Your GI probably has information on how to apply for it.

Having a chronic disease isn't a lot of fun. But it's a heck of a lot better than having a fatal disease!
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."

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