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IMURAN & REMICADE - nervous please offer advice

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Crohn's Disease
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Posted 5/20/2009 8:12 PM (GMT 0)
Hello,

I realize I am new to this forum but I don't have a lot of time on the internet to write this [and will be checking replies in a few days].

I will try to sum me up. I am 30 years old, 350 pounds, and I have chrohn's disease diagnosed in 2001 after a rupture and bowel resection. In 2005 I had my galbladder removed due to pain and stones. More recently I have been in the hospital 3 times in the last 5 months with chrohn's flare ups including several trips to the hospital for pain shots. I have been given various sterioids and as it stands now my regular medications are the following:

Asacol - 1600mg - 3xd
Metoprlol - 25mg - 2xd
synthroid - 75mcg - 1xd
entocort - 9mg - 1xd
prilosec - 20mg - 1xd
zantac - 150mg - 2xd
klonopin - 0.5mg - 2xd
celexa [recently discontinued] - 20mg - 1xd

I am worried because my doctor the only gastro in the town I live in is suggesting that i try imuran and possibly also remicade [not sure she meant together but it sounded that way].

So far I have looked at peoples posts around the internet and 75% of them seem to sound bad. I already feel fatigued, dizzy, bloated from the steroid etc.

Please tell me of these two medications which you all think is best and why. And tell me how realisitic the side affects are like hair loss, horrible achny, tumors, easily getting sick? I need some advice from people who have been around these medicines and taken them.

I seem to have side effects from anything I take and I already have bad anxiety and depression/problems getting motivated. The last thing I need is worse anxiety and less motivation to do anything.

thanks in advance I will read replies in a few days.
Matt
Posted 5/22/2009 6:05 PM (GMT 0)
This is a very serious matter for me, out of all the registered people here no one can comment on there thoughts and expereinces with remicade or imuran? I feel like either my post got deleted or moved to some odd place because someone at least one person should of responded.

Please respond to tmy original post so i can get more imput on the pro's and con's of both medications. I wanted real peoples imput am I in the wrong place?
Posted 5/22/2009 6:48 PM (GMT 0)

Hi Crohn's NKy,

I can't really give you alot of advise. I would just encourage you to be patient with the expected responses. You will get the advise you're looking for. There are many experienced people here that really go the extra mile to try to help. In the meantime I suggest you use the search function and look up other posts about the meds that you have concerns about. 

Tom.

Posted 5/22/2009 7:13 PM (GMT 0)
Hi Matt,

And welcome to Healingwell. I am sorry I missed your post. I have only used the Imuran. I am not on it any longer, it wasn't the right med for me. But many folks have gone onto Imuran or its sister med 6mp and have had alot of success with them. These meds are made to take long term (i.e. life).

If you look on the main post page there is a post at the top that say Crohns resources. If you click on that link there is a sticky post by IVY6 that has a medication link. Check it out, I think you will alot of helpful information there.

Good luck,
Gail *Nanners*
Posted 5/22/2009 8:54 PM (GMT 0)
I am wanting to try remicade.

Seeing a new g.i. next week.

I have heard the stuff is great, it's a night and day difference in some patients, but it just does not work for all. I at least want to try that out for myself.

I have been on Imuran, it does work, and it does help ME. I am not on it now, I too had gall bladder surgery(last month), and decided to stop using Imuran, and try to prevent the risk of infection from surgery.

There was some nausea at first from Imuran, and there is some fatigue from it. It seems to help if you can put at least a couple weeks inbetween your doses. I mean if you start out at 50mg, or one tablet a day, stay on that for a couple weeks, then increase to 100mg, and the fatigue is not as bad.

If you just started out on 100mg, it will be quite hard, you will be sleeping alot, and have little to no energy. Of course talk to your doctor first. It can take several months before you see any real results from Imuran, so you will need an attitude where you don't give up on it for at least that amount of time. For me, personally, I can tell a difference from it in a few days, but am very sensitive to my body.

Remicade I have no experience with, but have been wanting to try it for years now. I have been following it for some time too. It has some side affects, such as increased infections, colds, bugs, but I tend to think, in my humble opinion, how you respond to imuran(immune system suppression) is an indication of how you may respond to remicade.

Most people will get to where remicade does not work for them, or it doesn't work as well. The good news is that this can take years, and can sometimes give them years of treatment. Their body will build up antibodies to the mouse protein in remicade. There is hope though, Humira is usually the next step. It's a med like remicade, only it's made from human protein. Also if you watch tv, there are all kinds of commercials out now for new meds like humira, incase it stops working like remicade did, you move to the next one.

Orencia is one of these new meds; I see alot of commercials lately about it. It also is claiming to pay your co-pay on this med for six months(8 infusions), and that is kinda nice. I am not sure if this med has been approved or is used in CD patients, but you really should be far(years away) from worrying about that step at this point.

http://www.orencia.com

P.S. These meds can be VERY expensive, several thousand dollars per infusion, and that is really the bad news with them. No doubt your doc will do all the work needed to make sure they get paid for the infusions, but double check on the co pays, or your part, first.

Welcome to the forums smilewinkgrin
Posted 5/22/2009 9:15 PM (GMT 0)
Matt I hear your pain and aggrevation. i have posted before and not gotten a response and felt very isolated. But I know that people will. I have not been on here for quite some time and Your post is one of the first I've read and I am in tears for you and myself. I have had very similar diagnosis and I have tried many meds to get this in remission. I finally left the hospital that I was receiving care from and started fresh at another with a new GI. It has been such a major change for me. Instead of trying the usual pentassa, entocort, asacol, prednisone etc my GI said why do this agian let go for the big guns, why suffer any longer than you have. It was the right decision since the Crohn's has basically put me out of commission and I have been medically disabled for 4 3/4 years. I am 47 and I loved my job. Back to the meds. Imuran and Remicade were suggested but I had to have a blood test to see if I could use the Imuran. It turned out that given the lack of some thing in my blood the dosage would be so small that remission could take a lot longer than if I were to try the Remicade. The only tricy thing about the Remicade is that darn mouse protien. If you stop the remicade for any reason the chances of going back on it are very slim unless you can fit it in a two week span of when you get your infusion. This is the reason I had to stop the infusions. I had another surgical issue unrelated to the Crohn's and the recovery put me very close to the two week mark. We decided to try to start up again and I developed pneumonia spent 6 days in the hospital with numerous apologies from my medicall team. I in no way fault them for this. Everyones body reacts differently. What I know for sure is that while I was on Remicade I started to get my life back. I could and did leave the house for short periods of time, I even went to the grocery store which I know seems silly but prior to the Remicade I wouldn't have dared. I moved on to Humira which can be stopped and started when necessary(only human protien). This worked somewhat but not as good as the Remicade. I am now on Cimzia with fingers crossed and renewed hope. I think what it comes down to Matt is making sure the all of the research regarding you is done prior to starting the Remicade. I take many meds for different reasons and I am extremely careful when starting a new one. Ihope you do get the chance to try the Remicade. Make sure to talk to your GI about the blood work needed prior to Imuran. I wish you well!
Donna
Posted 5/23/2009 12:10 AM (GMT 0)
Hello Matt, my situation is a little different.  I am new to this forum as well.  I was diagnosed with sarcodosis back in 2005.  I was on so many medications methotrexate, arava and predisone.  I started Remicade Jan of 2008 no problems until about a month ago.  I noticed some joint pain swelling in my hands and fingers.  Then today about 30 mins into the treatment I broke out in hives and was itching all over-crazy!  That has never happened to me since I've taken the medication.  So I am supposed to go see my dr. in 2 weeks.  He did tell me that the joint pain could be a delayed reaction to the medication.  Although the nurse did tell me and I also read that I could get a dose of benadryl and or steroids before the treatment to lessen the reaction.  I will keep you posted.  One last comment the results were very good inspite of that.  With prayer Remicade did help with removing the inflammation in my eyes so that I was able to finally get cataracts removed from both my eyes.  Yes 33 and cataracts.
Posted 5/23/2009 1:34 AM (GMT 0)
One of our moderaters, Ivy, made a list of links to previous posts on some of the most frequently discussed medications, including Imuran and Remicade. I think that these will provide you with lots of "comsumer" reactions about the medications.

Ivy's list

Posted 5/23/2009 1:06 PM (GMT 0)
When I was on Remicade it was standard procedure to recieve benadryl prior.
Posted 5/27/2009 10:32 PM (GMT 0)

I am on the Remicade and Imuran combo and it has kept me healthy now for over 2 years.  For me the meds gave me my life back and I am so thankful for them.

Imuran - the first months I had hair loss, I have long hair and when I showered or brushed it I lost a lot.  Nothing anyone would notice accept anyone who looked at the drain in my shower.  I also was very fatiqued when first on Imuran,  I had to take it at night as it made me want to sleep.  Now I notice no side effects.

Remicade has not caused me any noticeable side effects except that I can eat now :) Just being able to eat without pain has caused me to add some weight but I needed it desperately prior to the meds.

good luck.

Posted 5/27/2009 11:27 PM (GMT 0)
I think you are dealing with two separate issues here:

1. Your concern about being on immunosuppressants at all, and
2. A reasonable concern that being on Imuran and Rem simultaneously can increase your risk of developing lymphoma.

Concern #1 is fairly easily addressed: how sick are you now? how desperate are you for relief? You are *already* susceptible to infection while you are sick; if you take a stronger medication and your health improves, then you may, in fact, be less susceptible to infection than you are now. Your doctor will probably be able to provide you with more information on this issue and allay your fears.

Concern #2 is something you'll have to discuss with your doctor. A question you might like to ask is whether it would be safter for you to be on a different immunosuppressent, such as 6mp or methotrexate, while receiving Remicade.

All the best with your decision.

Ivy.
Posted 5/28/2009 10:27 AM (GMT 0)
Can't speak for Imuran, but I have been on Remicade for 2 years now successfully. It has totally put me in remission with little to no side effects, and while I am very happy about this, I am concerned about being on these toxic drugs for such a long period of time. The elevated risk for lymphoma scares me, but with no alternative I have to take the risk. As I'm sure you are well aware you cannot go on living your life day to day with the Crohn's symptoms. I say get on Remicade, put yourself in remission, and look for alternatives once you get some relief.
Posted 5/28/2009 12:38 PM (GMT 0)
I'm on Remicade & Imuran also. Remicade didn't seem to be doing much on its own so we added Imuran. I'm doing much better but since they're both immunosuppressants, I just be careful to keep my hands clean & stay away from sick people.
Posted 6/2/2009 2:01 AM (GMT 0)
I've been on both drugs,now just the remicade. my doc advised to get off the imuran due to the lyphnoma (spelling) I've been on remicade for about 5 years now. I live in central illinois so the weather is always different on a daily basis. I have noticed as I get older the winters are a little tougher to get through due sinus infections never really noticed them when I was younger . But I had severe sinus infections and being on the remicade it gets harder every year to beat the infections. also when you are sick you cant always get your infusions. On the other hand being on the imuran, I had to get a very expensive blood test done every three months. The doc also warned me that if you have children planned NOT TO BE ON THE IMURAN not sure why . but the remicade has made a life change for me and i have also change my diet ,no fast food ,deep fried food , junk food . That has also made a difference . You are the one who needs to decide what you want to do. And it never hurts to get another doctors oppinion
Posted 6/3/2009 5:36 AM (GMT 0)
I was on Remicaide and recently switched to Humira. (New Doctor). I really don't feel a difference yet. Still losing weight and I could actually sleep all day! Every day! I met with my doc today who said that I need another Colonoscopy!~ Yeah! Next week, so he can see how my disease has progressed since November. I am just so tired..It really doesn't matter anymore.
Posted 6/8/2009 10:16 PM (GMT 0)
MATT,
Hello from Vancouver, i found your post and thought i'd give my two cents worth.
I have had Ankylosing Spondylitis for as long as i can remember and in addition to 18 Remicade treatments i had a 9 hour surgery to break and straighten my spine with hardware installed from top to bottom.
I dont have Crohns but it is similar in that it is in the Autoimmune family of diseases and is treated roughly the same.
As the infusion process takes 2.5-3 hours i have had a lot of time to hear peoples stories of past experiences. The majority of people getting Remicade are from my experience people suffering from Crohns and have tried all avenues of other cures first as Doctors tend to put you through these excercises in futility.
I honestly cant think of one person who said Remicade has not made a positive change in their life. My personal experience was one of fear at first as i bought into all of the possible side effects out there, yet i have experienced nothing but positive results which have enabled me to get off of all of the narcotic pain killers i was on.
Getting off Oxycontin/Oxycodone was a hellish experience in it self but the difference with and without Remicade is profound for me.
The biggest change in me is my energy level as a result of the lessening of inflammation in my body and joints. My infusions are every 8 weeks and at about 7 weeks i can feel a slight negative slide coming on as the dose wears out but is quickly recharged with a new dose.
I hope some of this helps, hate to see a brother in pain,
Good luck!
Mike
Posted 6/9/2009 5:37 PM (GMT 0)
I have been on infliximab (remicade name in UK) since Oct 2008. I am doing well. The only side effects I had was sinus pain for the 3 days after my infusion but that seems to have gone now. I feel like many others that I had no choice but to take this med. I had exhausedted all other drugs and am not a suitable candiate for surgery. I am happy as usch to take this drug because of the quality of life it has given me.
Posted 6/9/2009 7:53 PM (GMT 0)
going on 6 years on Remicade and 6mp.

I know 6mp is different from Imuran, but they are in the same family, I think.
I was very concerned when I first went on these two drugs, the doctor explained all the risks to me, and due to the fact I was facing surgery, I decided to give it a try.

I'm very happy I did. I've been living almost 6 years now mostly symptom free. I've never had an issue with the Remicade, and the only issue I've ever had with the 6mp was at high doses it made me very tired. I've never had an issue with being exposed to sick people, although I am careful. I work at a university and I have a son in preschool, and I probably get exposed to a lot more than I can imagine. Still, no problems.

You need to be very careful about how much you read on the internet about side affects of drugs. People that have no problems with a drug will rarely post about it on the net. If you rely just on what you read, you are going to get a skewed perception of Remicade, and that might keep you from finding your drug that works. Keep in mind that ALL medications have side affects and warnings, and I've heard it said that if they tried to get asprin approved now, it would probably get denied due to being too dangerous.

I've been on this mix of drugs a long time, and no lymphoma, no cancer, no side affects. What I do get is long periods of symptom free living, I got my life back, and I have all my original parts that I started with (except my appendix and the few odd wisdom teeth).

I just had my regular "every 4 month" visit with my GI, and he says I'm doing extremely well. He also states that while he was concerned about the risks of these drugs when I first went on them, he's not too concerned since everything he has read about these drugs shows that a lot of the initial concerns never materialized.

What ever YOU choose, I hope you find the treatment that works best for you. I know what it is like to suffer through hell with Crohns, and luckily I know what it is like to be on the right meds.

Hang in there.
Posted 6/10/2009 6:50 PM (GMT 0)
"You need to be very careful about how much you read on the internet about side affects of drugs. People that have no problems with a drug will rarely post about it on the net. If you rely just on what you read, you are going to get a skewed perception of Remicade, and that might keep you from finding your drug that works. Keep in mind that ALL medications have side affects and warnings, and I've heard it said that if they tried to get asprin approved now, it would probably get denied due to being too dangerous."
Matthew, darn good advice!
You can not rely on the possible reactions you read on the internet. As we all know drug companies will cover every possible item in their list of complications just to thoroughly cover their butt...just in case. If only the warnings were as thorough for Oxycontin and Oxycodone along with other Narcotic pain killers... why is that?
I guess the point is do your research, i find a forum like this will give me a lot of great opinions through others experiences and enhance my knowledge.
I am curious if anyone else feels their dose starts to wear out after 6-7 weeks or so.
I have met many people who say this no matter of what their dosage size is the duration is the same...interesting.
Posted 6/14/2009 1:19 AM (GMT 0)
Mine occasionally seems to do that. Actually, after being on Remicade for about 2 years at 450mg, it really seemed to wear off quick. One night I went into total flare, and ended up in the hospital for 8 days with a stricture blockage. They were considering surgery (again), but the GI had read about high doses of Remicade as a treatment. Sure enough, he bumped me up to 1000mg, and I've been fine ever since. Not sure how long it will last, though.

Even at twice the recommended dose, I still don't have any side affects or any negative experiences.
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