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Posted 6/26/2012 3:55 PM (GMT 0)
I need help,

Can anyone give me their experiences about remicade?

My doctor is really pushing me to take three different rounds of remicade.  I have a seizure disorder and have had Guillain-Barre syndrome.  I have a medication guide regarding remicade and there is a page on who should not receive remicade.  Both Guillain-Barre syndrome and seizures are listed on that page.

My GI knows I have both but he is acting like it's no big deal.  I have real doubts if I should take it.

Can anyone give me their remicade experience and results?

Currently on 2nd flare, been on pred @ entocort 2 months with no results yet.  GI told me if I don't take remicide, surgery is the only option left.

 

Post Edited (I need help) : 6/26/2012 10:04:00 AM (GMT-6)

Posted 6/26/2012 4:39 PM (GMT 0)
I would have your Gillain Barr doctor consult with your GI.

Sue
Posted 6/26/2012 5:46 PM (GMT 0)
I agree with Sue. Whatever doc is treating you for your Guillain-Barre syndrome or seizures should be consulted.
Posted 6/26/2012 5:56 PM (GMT 0)
I really can not comment on the Guillain - Barre or Seizure disorder, but I know I was having difficulty for years trying to go in remission with UC taking Imuran, Prednisone, Pentasa... ect anyways I will say I was really nervous to take Remicade and I to read that Drug sheet and it scared me white as a ghost but I bit the bullet and brought my mom to my first infusion. I was happy I did try Remicade as I have felt a lot better since starting it and have finally had relief.
Posted 6/26/2012 6:06 PM (GMT 0)
I would make appointments with the docs you see for Guillain-Barre and the seizures. If it's a long wait to see them, I'd try calling the office and seeing if they'll comment over the phone.
Posted 6/26/2012 6:24 PM (GMT 0)
I agree to get the docs to state the big NO to your GI, who obviously has his head up his own butt.

Are you not able to take any of the 5ASA meds such as asacol, Rowasa, etc?
Are rectal meds not part of your regimen?

Where exactly is your UC...throughout or limited?

welcome to the forum!
q

Posted 6/26/2012 7:50 PM (GMT 0)
I'm also currently on asacol, however, I think it makes things worse.  I've told my GI that but he does not want me to go off. (I might anyway).

I have been in the hospital twice in the last year.  Last scope showed it has spread throughout. 

Posted 6/26/2012 8:55 PM (GMT 0)
This is just my two cents but I would not take that risk to go on the Remicade with your history.
Posted 6/26/2012 11:12 PM (GMT 0)
Thanks for your input.  

The last thing I need is another seizure.  Another one and my license will be history.  Taking remicade is too much of an unknown for me.  I think it's time for a second or third dr. opinion.

Posted 6/27/2012 12:01 AM (GMT 0)
I need help,
I don't know how bad your UC is but I had j pouch surgery 2 years ago and its been nothing short of a miracle for me. Its a tough surgery(s) to get thru but once it's done you are rid of UC for good. No more drugs. I had the surgery because I exhausted all the meds, had zero quality of life and I was in a really dire situation. I wish I hadn't waited until I was that sick.
Posted 6/27/2012 2:15 AM (GMT 0)
 

ByeByeUC

Could you tell how long your recovery was for both surgeries?  How long were you in the hospital?  I'm starting to think about surgery now.

Greg

Posted 6/27/2012 11:41 AM (GMT 0)
My first surgery I was out from work for 6 weeks, I think my takedown (2nd and final surgery) was 4 weeks. It was really hard and the first year isn't easy (although after a few months it was much, much better than UC). I am so happy I got this done. I have a normal life again. It isn't what it was like before I was sick with UC, but it is so much better than with UC. No urgency or pain. I go when I pee. I had takedown about 15 months ago and it still is getting better. The only medication I am on is OTC lomotil.

I had awful reactions to Imuran and 6MP and I knew that the success rates were low for Remicade and Humira and I knew that even if they did work, they wouldn't work forever, so I didn't go that route. I was done with drugs that made me feel awful in addition to feeling awful from UC. I also knew that the younger you are the better the j-pouch works so at 45 I didn't want to wait any longer.

If you are thinking about doing this, please do your homework and get a very skilled, experienced j-pouch surgeon. It is a very complicated surgery and people who have inexperienced surgeons or have to have it done as emergency surgery don't have the success that I have had. That's not to say that there aren't risks, but why take additional risks. I went to the Cleveland Clinic and my surgeon was a Godsend!

Good luck whatever route you take. I agree with the above, you need listen to your G-B doctor before you do anything.
Posted 6/27/2012 12:02 PM (GMT 0)

I need help said...
ByeByeUC



Could you tell how long your recovery was for both surgeries? How long were you in the hospital? I'm starting to think about surgery now.



Greg

I had the two step laparoscopic procedure. So I had my colon removed and they created the j pouch at the same time. I had my first surgery June 2010 And had an 8 day hospital stay. I had the temporary loop ileostomy 3 months until the reversal that October. That first month after the first step was pretty rough. Just recovery from it all and getting used to the ileo. And i had to go back to the hospital because I developed an abcess and had to get it drained. Then after that month I felt a lot better. I'm a stay home mom so I didn't have a job to return to but I could have gone back to work after that. The takedown surgery was very easy for me and I was only in the hospital for 4 days. I was very fortunate to have a really quick recovery from that step and I was back to my crazy daily routine running my kids around two weeks later. I haven't looked back since. I am enjoying life again without UC.

If you are considering it, you need to get all your doctors opinions and to discuss it since you have a history of other things going on. It's a huge surgery. You would probably have to have it done in 3 steps because of your other medical issues. Best wishes to you. :)
Posted 6/27/2012 7:09 PM (GMT 0)
 

Thanks for the info,

I just made an appt with a colon surgeon. One of my concerns is work and how much time I might miss. It's been pretty stressful there lately.  That is probably why I had a relapse.

Posted 6/27/2012 7:50 PM (GMT 0)
Definitely get at least a second opinion about your IBD treatment, and have your treating physician for your other problems (non-UC) discuss the risks of Remicade with your GI doc. If you are uncomfortable with your present doctors please take the time to find ones you trust, and work together with them for what is definitely in your best interest.

I'm presently in the infusion center getting my fifth infusion. It has given me slight relief this year, but I'm still waiting for it to really kick in.

Best of luck to you.
Posted 6/27/2012 8:02 PM (GMT 0)

I need help said...
Thanks for the info,



I just made an appt with a colon surgeon. One of my concerns is work and how much time I might miss. It's been pretty stressful there lately. That is probably why I had a relapse.

Please do your homework on the colorectal surgeons in your area or even of you have to travel a bit. I interviewed a few before making my final descision. You need someone who has done many j pouch procedures. You will miss a fair amount of work...that is for certain. Good luck. :)
Posted 6/27/2012 8:48 PM (GMT 0)
 

Thanks,

The tough part for me is I have kaiser.  I live in San Diego,Ca and was told there is only 1 rectal/colon surgeon for SD.  You can imagine how busy he is. I will have to talk to him and play it by ear.

Posted 6/28/2012 1:01 PM (GMT 0)
I hate that most people think surgery is the better option before even trying Remicade.  "Remi" is considered a "miracle" drug for many refractory UCers.  Either it will work for you or it won't...its that simple.  Yes, the safety profile is scary, but that is because of the long term unknown.  As far as its history thus far, it has been proven to be extremely safe.  The only recorded issues are from allergic reactions that are easily remedied...OR, when combined with 6mp.

The downside is you have to go to an infusion center, and its extremely expensive.  However, its kind of nice getting your labs read every couple of months.   

 

Post Edited (trojen) : 6/28/2012 1:38:09 PM (GMT-6)

Posted 6/28/2012 2:46 PM (GMT 0)

trojen said...
I hate that most people think surgery is the better option before even trying Remicade. "Remi" is considered a "miracle" drug for many refractory UCers. Either it will work for you or it won't...its that simple. Yes, the safety profile is scary, but that is because of the long term unknow. As far as its history thus far, it has been proven to be extremely safe. The only recorded issues are from allergic reactions that are easily remedied...OR, when combined with 6mp.
The downside is you have to go to an infusion center, and its extremely expensive. However, its kind of nice getting your labs read every couple of months.

Its really just someone's personal choice. Maybe someone just doesn't want to go the heavy duty drug route. There isn't anything wrong with that and this poster... I need help...has a history of seizures and other medical issues so Remicade may not be a safe choice for him/her. And in many cases, Remicade is just a time buyer anyway as it tends to lose its effectiveness over time. I tried Remicade and I don't regret trying it but knowing what I know now after having surgery, I wish I had just skipped it because I wasted another year of my life. Just my personal experience...I know it has helped many people. My mom is on Remicade to treat her RA but now after a few years on it, it's not working so well anymore.
Posted 6/28/2012 3:39 PM (GMT 0)
Remi is not entirely safe. I know an RAer who has terminal cancer due to Remi. The drug is fairly new, as drugs go so we won't see long term side effects for many years.

Sue
Posted 7/1/2012 4:57 AM (GMT 0)
I need help,

So glad you are questioning Remicade. If I could do it all over again, I would have never gone on it! If you want to read my story here it is http://simplisticwholistic.com/blog/2012/06/my-gaps-gut-healing-journey

You could always consult with Dr. Thomas Cowan in San Francisco.....
Posted 7/2/2012 2:14 AM (GMT 0)
 

Well, I just spent 4 days in the hospital.  Flare went out of control and surgeon sent me to hospital.  I HATE THIS DISEASE.  Talked to many doctors and decided remicade is not for me.  Too many past medical history for me.   I had to get 120mg pred IV a day pumped into me.  Having to start at 80 now at home.  I had a nurse with UC and has been in remission for 10 years. She swears by cod liver oil everynight plus a couple of other things and for the short term I'm going to try them.  I see surgeon in couple of weeks of weeks.

ByeBye UC,

do you have any must questions or advice for me to ask surgeon?

Thanks,

Greg

Posted 7/2/2012 2:36 AM (GMT 0)
w.t.f. 120mg pred a day....wow heavy stuff lol... I had 60mg tops a day.


Oh yeah, this disease sucks monkey balls.
Posted 7/2/2012 2:45 AM (GMT 0)
I was told 120 IV is similar to 80 orally.   Someone correct me if I'm wrong.  That is what two of my doctor's told me.

Post Edited (I need help) : 7/1/2012 8:48:10 PM (GMT-6)

Posted 7/2/2012 2:51 AM (GMT 0)
Dude!....

120 IV is FARRRRRRRRRRRR stronger than anything orally. Who ever told you that 80mg pred is the same as 120 I.V. you should tell him or her to put the pipe down.

Iv goes directly in your bloodstream and is by far the most effective method. Orally doesn't even compare.
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