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Ulcerative Colitis
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Posted 6/7/2011 6:50 PM (GMT 0)
I have an appointment with my doctor next week to "discuss further treatment options". Last time she had said that Remicade infusions would be the next step if the Imuran I started then didn't work. I've gotten better but not *better* if that makes sense... stable but not improving to where I want to be.

I've pretty much convinced myself now that I want the infusions. Anything to be normal! My husband however thinks I should put more time/thought into it before making a "major lifestyle change". (I'm not sure how much of a major lifestyle change infusions are compared to taking 20 pills a day.) He also said that I'm making the decision "under duress" - of course I am! I'm miserable and want it to stop!

So how "hardcore" is Remicade? Does it just feel that way because it's infusions instead of pills? Will I still have to take all my other pills? What happens if/when it stops working? I read so many people saying it failed for them, but then realize only the people who have problems are posting.

Another thing that's really pushing me in that direction is that I saw that that Imuran is a class D drug while Remicade is class B, and I'm hoping to get pregnant next year.
Posted 6/7/2011 7:03 PM (GMT 0)
Remi is a big gun med....there are side effects.

Tell me what meds you've already used so far...exactly.

q
Posted 6/7/2011 7:06 PM (GMT 0)
Hoshi - it is really an individual decision...

I have always thought that Remicade with scarier than imuran/6mp because the long-term effects are less known. It hasn't been around for that long so no one can say for sure that there isn't some crazy side effect that shows up 30 years after treatment.

I also have the same worry you have, what if it stops working? I don't know what you do if it stops working? I guess you're back to square one, trying to find aother treatment that works or trying alternative therapies. Some try Humira or some may try a course of prednisone, some decide to have surgery.

I am hopeful that if I go on Remicade, I could get off my other medications but I don't think there is any guarantee of that. I see a lot of people on here who are on Remicade along with other meds. I remember when I started 6mp, I thought I would get off Asacol but I am still taking it. I am not sure if it helps me but I am scared to stop because I don't want to risk a flare up.
Posted 6/7/2011 7:35 PM (GMT 0)
Drugs on so far:

Prednisone - just tapered to 7.5 mg as of today. Want off this asap.
Lialda/Asacol - (was on Lialda, doctor switched me to Asacol, just switched back to Lialda because of the cost)
Imuran - 225mg, dosage raised twice

All cumulative... haven't gone off anything (not even the prednisone :() since being diagnosed in November.

I don't mind/expect to stay on the mesalamines, and plan to ask about the enemas at my appointment. But the pregnancy thing...

Honestly, I have no attachment to my colon anymore. I know I'm too young/not sick enough to think like this, but since I've read that surgery is the only thing that can affect fertility I figure I just need to make it past that and then can have it out if necessary.
Posted 6/7/2011 7:38 PM (GMT 0)
How long have you been on imuran? What dose of Lialda? Why no rectal meds?

Have you had your imuran levels checked to see if you're in the theaputic range?

Posted 6/7/2011 7:43 PM (GMT 0)
I have been on pred since Nov too. I didn't even start to taper until I was no longer bleeding and only having one somewhat formed stool a day. Now I am at 7.5mg after a very slow taper. I will go to 5 next week for 2 weeks then down to 2.5 for 2 weeks. I do not have advice on the Remicade and pregnancey but I am still nursing my boy. My doctor has been very good with trying to only keep me on drugs that I can take while nursing. Tell your doctor your concerns and hopefully he/she will work with you. I was not diagnosed until after I had my baby but my symptoms started at the end of my pregnancy....towards the end of the 9th month. If my symptoms come back i will have to decide on Humira or Remicade and probably stop nursing.
Good luck!
Posted 6/7/2011 8:05 PM (GMT 0)
Imuran since January and levels checked twice, both times the dosage raised. Insurance isn't covering the tests either! Sure they'll cover the drugs but not the test to make sure it's effective?

Lialda is 2 pills, Asacol was 8, whatever those translate to.

I'm going to ask the doctor about rectal meds at the appointment. I've only had a few in-person visits, the last one when she put me on the Imuran, and it's something I'm kind of embarrassed to ask about on the phone.
Posted 6/7/2011 8:50 PM (GMT 0)
You need to get over the embarassment and get on the rectal meds. I would strongly suggest the Rowasa. CALL....

q
Posted 6/7/2011 9:27 PM (GMT 0)
With UC you get over embarrassment FAST haha
Posted 6/7/2011 9:31 PM (GMT 0)
I don't think Imuran can be effective if you're not in that range. I had to add a 2nd drug called allopurinol to get into the theraputic range. I actually think lowering the dose and adding allopurinol may be more effective than takiing a monster dose of Imuran. You should ask your GI about trying it.

I agree with the others about embarrassment, you have to get what is going to help you. You shouldn't be forced to take remicade if you could be helped with an enema! I was lucky because my GI offered them so I know she doesn't think anything of me asking.
Posted 6/7/2011 9:49 PM (GMT 0)
Well as for the embarrassment issue, I'm seeing the doctor in person in less than two weeks and plan to ask then. I just don't want to play the phone tag game with receptionists and the nurse who will have to call me back at work.

My remicade hopes may have been dashed - I called my insurance to find out if it's covered, which it is, but at 80%. If the information I'm finding online is correct that's 20% of $6-7,000 every month and a half!! On the other hand the company seems to have a rebate program...

Just wish this appointment would hurry up and come already.
Posted 6/7/2011 11:51 PM (GMT 0)
Enroll sooner than later in the remistart program. I have been in it over a year now, and also have 80/20. It's also 20% of the allowable amount, and not 20% of whats billed. Big difference.
Posted 6/8/2011 2:05 AM (GMT 0)
i am a 29 yr old mother of 1. i have been fighting the good fight for 3 llllooooonnnnnggg years. remicade did keep me in remission for a year and suddenly about 2 and half weeks ago that failed as well. i have been on every drug coming and going and am finally taking the plunge and having j-pouch surgery on Thursday!! But to answer one of your question, you can get pregnant on Remicade but the timing has to be just right!! good luck and i hope you feel better soon!!
Posted 6/8/2011 1:37 PM (GMT 0)
I agree w/Quincy, try the rectal meds.  Try to give it some more time.  Unfortunatley Imuran was just not working for me, it's scary being on remicade b/c if this doesn't work then it's possibly humira and then surgery.  I feel more limited now in my options.

My GI told me even though it's class D I could get pregnant while on it.  Even though Remicad is a class B, it is still scary to me.

Posted 6/8/2011 1:52 PM (GMT 0)
momof14ever,


Regarding: i am a 29 yr old mother of 1. i have been fighting the good fight for 3 llllooooonnnnnggg years. remicade did keep me in remission for a year and suddenly about 2 and half weeks ago that failed as well. i have been on every drug coming and going and am finally taking the plunge and having j-pouch surgery on Thursday!!

Sorry about the good fight ending up with surgery. I know people say it's the best thing, but it's irreversible.

Have you given any thought to LDN?

There's so much data out there, including studies by Dr. Jill Smith of Penn State, with crohn's patiens going into remission.

If you need and are open to it, I'll be glad to post the info on LDN.

My 2 cents: I would postpone the surgery and try one last ditch effort: Transdermal LDN.

Good luck to you whatever you decide. It's a tough disease with lots of tough choices.

 

Posted 6/8/2011 1:57 PM (GMT 0)
Hoshi~

Regarding: I've pretty much convinced myself now that I want the infusions. Anything to be normal! My husband however thinks I should put more time/thought into it before making a "major lifestyle change". (I'm not sure how much of a major lifestyle change infusions are compared to taking 20 pills a day.) He also said that I'm making the decision "under duress" - of course I am! I'm miserable and want it to stop!

I agree with your husband. There are other options out there.

What about diet? Supplements? Rectal meds, like Canasa? And finally, LDN, which I must admit I am a big proponent of.

DId you read the post: https://www.healingwell.com/community/default.aspx?f=38&p=1&m=2128462#m2128573

Poor Kelli has been experiencing terrible side effects because of Remicade use.


 

Posted 6/8/2011 2:16 PM (GMT 0)
I have been on remicade since July 2009.  I tried asacol, lialda, and 6mp, I'm allergic to all of them.  I was diagnosed in March 2009 with severe UC throughout my whole colon.  So this all happened really fast for me.  Anyways, I always had the mind set that i would try the drugs with the less side effects first and then work my way up.  I would stay on the Imuran as long as you can still have a life.  If you are doing really bad, then maybe remicade is the answer.  Remicade does have serious side effects.  I don't like being on it but it has helped my symptoms after about the fourth infusion.  It took a year and a half for me to see results as far as my colon healing.  I have a life.  I have D about 4 times a day and i know when I will have to go.  I also haven't had any accidents since starting it.  But I get side effects from it.  I get very bad heart burn I have to take prilosec and that doesn't help that much.  I also get a rash, so, I have to take zyrtex every day.  I also get joint pain and muscle soreness.  I choose to live with the side effects versus living the way I was before remicade.  I had no life and if the remicade doesn't work anymore and I get really bad I will have the surgery but I will try Humira, accupunture, worms, and fecal transplant before I have surgery.  To me I want to be able to tell myself I did everything possible before I did the surgery.  Just in case the surgery has complications.  It is irreversable.  Though it has over a 90% success rate.  I know you can have a child on remicade and Imuran, not mexotrixate though.  I was lucky I didn't get symptoms until I was pregnant with my third child and my last.  Good luck on trying to get pregnant.  Also, the hospital I go to has a program with remicade on it being covered if your insurance doesn't cover it.  You just have to pay the nurse fee etc.  They also have a low income sheet you fill out and they will cover your other hospital bills up to 100% depending on your income.  Ask to speak to the financial person there.  I thought I was going to lose my insurance last year and they were really helpful in getting me my medication and helping pay for it.  As far as being on other drugs with remicade.  I'm just on the remicade because I'm allergic to everything else but my doc wants to put me on the methotrixate with the remicade because of my joint pain and I'm not doing it yet.  I can deal with the pain.  I know alot of doctors want to keep you on the imuran and remicade together.  I'm just scared to be on two scary drugs together.  It is bad enough being on the remicade.  I guess it depends.
Posted 6/8/2011 3:08 PM (GMT 0)
I went on Remicade because Imuran made my liver enzymes wonky and I was desperate to feel better after being on pred. for 7 months. I felt like my life was in a holding pattern. Even on Remicade I use Canasa (Mesalamine suppository) because the last few inches of my colon are stubborn. It helps tremendously.

As for the 20%: I pay $600 per infusion out of pocket. about $520 for the drug and $80 for the infusion center. I have my infusions in an infusion center in a doctors office. NOT in a hospital. If you have the infusions in a hospital it's much more expensive. Right now my infusions are every 8 weeks but they are going to be moving to every 6 weeks. (No changes in response it's just that my body seems to kick the infusion out after 6 weeks and I'm tired of feeling bad for those 2 weeks between). I know I will reach my maximum out of pocket even at every 8 weeks this year so it's no cost difference to me. The only side effect I have noticed so far with the Remicade is that I can't seem to tolerate alcohol. I know there are unseen side effects, though.

Take care! Good luck with your decision! :o)
Posted 6/8/2011 5:39 PM (GMT 0)
I was on Remicade for 5 1/2 years, felt great, and had no side effects until the last few months of taking it. I've had two colonoscopies that show my colon healed of ulcers and no polyps.

Posted 6/8/2011 7:07 PM (GMT 0)
Well I've backed off on definitely wanting Remicade... just really want this appointment to come already so I can find out what my next options are, and I'm making a list to makes sure I get all my questions answered.

As for having a life... well I feel guilty for wanting more when so many people would be happy to be where I am, but I do. I realized recently I'm more faking having a life.

I can hold down a job, but I've been barely functional some mornings from dizziness, nausea, etc. I've passed up opportunities to travel and I'm afraid of even having to do something out of the office. I can't even go more than 5 minutes away to get lunch.

Now that it's summer I've already missed some festivals where I've had other excuses (oh it's rainy, we've gone every year and it's the same, etc) but the real, real reason of course is this. Parties... of course there's a bathroom but what if it's occupied, and once I've gone once there'll probably be a second and I just feel icky and want to go home.

I'm afraid to take walks... to schedule a dentist appointment, or some self-pampering for my birthday. My husband talks about taking road trips, or even going on the paddle boats on the lake we live by and I think, "that sounds like fun... when I'm better." I can't even imagine an hour on a lake knowing as soon as I can't access a bathroom I'll need it. (If only I had a counter that said, okay you've gone X times, you're done for the day.)

All of my plans for the future are based on being "better". On top of starting a family I plan to start a business (baking) and go back to school. I found out that baked goods sell really well at craft fairs which is really exciting, but I'm totally fixated on this idea now of how in the world would I man a craft fair booth if I have to go to the bathroom five times before noon?
Posted 6/9/2011 2:42 AM (GMT 0)
I don't think you should feel guilty at all! You deserve to be able to do all of those things you described! And I think going into your appointment with an open mind is really good. You never know! Something other than Remicade will be the answer for you! :o)
Posted 6/10/2011 12:30 AM (GMT 0)

I definitely would not count out Remicade!

After battling with severe symptoms on and off (mostly on) for for the past year, including severe stomach pain, exhaustion, fevers, and 15-20 bloody BM's per day, I decided to start Remicade this past April, and have just finished receiving all my loading doses.

Prior to starting the Remicade, I had used Predisone several times (it eventually stopped working for me), Lialda, Imuran (100mg per day), Rowasa enemas, VSL #3, and tried a complete gluten and dairy free diet, but nothing was able to keep me in remission for more than a month or two.

The Remicade has been a life saver so far and I feel 100%, completely normal! I am down to 1-2 BM's per day and have no symptoms. I don't know how long it will last, but I pray it will continue to work, and I am thankful to be able to live a normal life again. I have not experienced any negative side-effects from the Remicade so far after 3 doses.

The infusions really are not that bad, yes they do take up several hours of your time and can be expensive, but it is much better than feeling sick all the time. I sometimes find the infusions to be relaxing actually. It is a time where I can go and relax, not have to worry about my job, or housework, etc.

If you are going to start the Remicade, I would definitely recommend stopping the Imuran though. There have been recent reports by the FDA of an increased number of cases of a rare cancer that is often fatal in young adults, mostly seen in patients taking Remicade and Imuran at the same time. This was a major concern to me, since I am only in my mid-20s.

http://www.fda.gov/Drugs/DrugSafety/ucm250913.htm

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