New to Crohns ---scared of remicade

[Prince]

Hi everyone,

I was diagnossed with Crohns this year, April, after having a colonoscopy for my fistula which poped out in Jan. I started with pentasa, metronidazole, then added cipro to stop my everyday mild fevers. I had to get off of the antibiatics after a few months due to tingling in my feet and wierd nerve and I am now on AC Amox which seems chill. None of them have closed my fistula but I have been feeling good with no symptoms and the drainage is less.
Im trying to live my new happy life in boston but the doc wants me on remicade. I rejected and told him my case is mild and Im happy with the current meds. Im 23 and dont wanna go under strong meds for lifetime with side effects. On the other hand Im scared that suddenly things get worse and out of control. Im so confused. Doc wants another colonoscopy. I dont see a bright future. Im tired of MRI, CT scan, blood tests, blah blah blah. I think I can coexist with my fistula. Is it worth getting on remicade when I have no symptoms but a fistula? I wish I was normal. It all happened so fast. I still cant accept the fact :runaway:

 

[Angrybird]

Hello and welcome to the forum

I myself have not had a fistula so could not advise on whether it will work to continue living with one like this, we do however have a sub forum for these that is worth checking out to see if the folks here have other options to try before the Remi: http://www.crohnsforum.com/forumdisplay.php?f=76. Whilst not the most pleasant of things I do think that the colonoscopy is a good idea, this can give a clear picture of what is going on and to make sure that things are settled as unfortunately it can happen that whilst you are feeling well things are bubbling away inside.

Please keep us updated on how you get on.

AB
xx

 

[theresad]

I'm here because my son (now 19) was dx'd with Crohns in November of 2011 after CT and colonoscopy confirmed. He started on Entocort, it slowed down his symptoms but then we had a horrible anal fistula debacle from Jan-March w. 2 surgeries.

I really sympathize w/ you - that is really a tough thing to go through. You are so right - it is very hard to get used to it, and you go from never even thinking of doctors, to getting poked and prodded and tested every week until you want to go crazy.

I argue alot with our GI to avoid stronger drugs, but during the fistula thing, he had a lucid moment and told me that the fistulas were a sign that the disease process was not under control and that we had to fix what was happening vs. worry about what could happen. That made me agree to Imuran. After that, my son's fistulas healed very well, and he has felt much better physically all year. Still I think this has been mentally hard for him, but he's been dealing with it and is relieved that he is not acutely sick and he is so glad that the fistulas are healed and over. Unfortunately he had his repeat colonoscopy this month, and his colon looks totally improved and clear, but his ileum still looks like crap. The GI said the dreaded word Remicade - we (ok, I) said NFW. We're going to spend the next 30d with alternative medicine + LDN consults and see what else we can try. In my opinion, at least for my son, Remicade is a very scary last resort and although we may end up there, I dont' want to start there.

I'm not at all recommending anything here because everyone is so different, except that if I were to give you advice, I would say you might want to pick something vs. concede living with fistulas. No matter what you do, even if it's through nutrition, alternative treatments, or lesser treatments than Remicade, - at least you can try something and give yourself more control over your life rather than be at the mercy of it.

I also agree that getting a colonoscopy will at least give you a baseline that you could use to see how some of the things you're trying are working.

Good luck to you and I hope you find an answer. And Boston is an AWESOME city so you at least get to live somewhere cool!

 

[Prince]

Thanks AB for the link, I found some good stuff there. And thanks theresad for sharing your sons story. alot of what u guys said r the same as what my doc says. I guess they all read the same books ! lol. I think I have to go with the colonoscopy to at least see how things are going on inside and then decide from there. I have question for you theresad, do you know if ur son's fistula was a simple one or complicated? (mine is a 3 in 1 complicated so no surgery is ganna work) and how did it take to heal? and did the doc say it might come back if u stop meds?

 

[theresad]

Hi prince - my son's fistula was perianal one that they treated with a cutting seton. It was a simple one but it was abscessed and infected so it was really painful and gross. They said (and I read) that if you're prone to them, they keep developing if you stay in a flare so not that the healed one would return but that he would get them repeatedly if he remained flaring which is why they wanted him on Imuran. Even with the Imuran he healed vey well and fast (after he got over the c-diff he got in the hospital which was a pleasure :lol.

So yeah, they said that if he didn't stay under control that this would be a continued problem.

Sometimes they're worried that repeated perianal fistulas can compromise the sphincter muscle so there was no way for us to avoid the surgery. I don't know much about fistulas except for the perianal kind (I never in my life thought I would say that ) - what is the nature of yours?

 

[Prince]

Mine is a perianal as well. Its external so the puss does not stay inside and drains thats why I never had pain and it does not bother me that much I think the infection is in control with my antibiotic. I've heard internal abscess and fistulas can be very painful though. Im meeting with my doctor on Tuesday, I never heard of imrun, he only recommended remicade or humira. So I will ask for alternative treatments now. Hopefully there is an easier way to keep this under control. Thanks again and I hope ur son stays well and happyyyyyy :dance:

 

[my little penguin]

Deciding on which drugs to use is very hard place to be in.
Remicade is a strong drug.
Most doctors do not recommend it unless they feel its warranted .
The colonoscopy is a good idea to see where you are at.
Ideally remicade would work well and you would be on it for the rest of your life and ONLY have to worry about the side effects.
I have found nothing about Ibd is ideal or predicted .
Most lose response to remicade .
We put DS age 8 on it after trying ever other drug.
We had no other option complications of crohn's were a given for my son.
The possible side effects of remicade were not.
I would talk to your Gi and ask the what if I leave things go how bad will it get- that may help you decide .

 

[David]

Hi there and welcome to the community

I agree with what the others are saying as well. I'm afraid that you having a fistula means that your disease is not mild. I'm sorry

Yes, Remicade can be scary and I understand that. But improperly managed Crohn's disease is MUCH scarier in my opinion.

Again, welcome to the community. We're here for you anytime.

 

[colin470]

Hi .... dx WITH Crohns in '08 and was put on Remicade ... after having operations for a perianal abscess which didnt heal.
Got immuned to Remicade after 8 months (due to the "monkey molecule in the drug I was told and the body starts rejecting the drug). Am on Humira now for almost 2.5 years and touch wood its working so far. Tried azathioprine (prob spelt wrong) and I had a reaction to it.... hair started falling... and looked like a cancer patient undergoing Chemo. Bone marrow shut down due to Aza... so it wasnt pleasant....
Had 7 operations in 2 years... had a stoma for 10 months, fistula from my bum at the start... 2 fistulas from my tummy.... so dont really have much choice with regards to not taking on the drugs....

I know of all the possible side effects .... cancer and all.... BUT for me, without the drug... I will not be living the life I am right now.... sailing competitively and enjoying my time with my family..... may sound irresponsible... but am living each day as though its my last...

 

[Prince]

So I met with my doctor today and he said the fact is you are ok now is great and hopefully I will stay the same withour symptoms for long. However, just as most of you said I have to do a colonoscopy to get a baseline. Hopefully if thing are the same or have got better I stay on my current meds. Only if the wounds have got worse I will have to choose remicade. Twisting my finger for colonoscopy in January!!!

(***Live and enjoy the moment, dont ruin it by thinking about what has not happened! Cheers)

 

[Angrybird]

Thanks for the update hun, I will be keeping fingers crossed that all goes well with the upcoming scope.

 

[Prince]

so I did my colonoscopy and the results were great!!! 90% of my rectum ulcers are clear and half of my ileum ulcers. I guess pentasa or my new diet or yoga is working. so i wont be taking any remicade for now. I will give the fistula some more time and monitor it till i figure whats the next step

 

[Angrybird]

Glad to hear the scope went well hun Definetly keep an eye on things with the fistula, I have not yet heard of these clearing up with a med like Pentesa. How often will you continue seeing your doc for check ups?

 

[Prince]

Thanks I'm also taking augmentin for the fistula to control the infection. I have met people here who have lived with a perianal fistula for 3 years with no pain or anything just drainage. I meet my doctor every 2 month. I guess I might do an MRI in a couple months to check on the fistula. For now, we coexist )

 

[Angrybird]

Do keep us updated on how you are getting on, I will be keeping fingers crossed for you.

 

[David]

What is the new diet that you're on?

I'm sorry, but if you have a fistula and active ulcerating disease like you describe, I'm very worried that being only on Pentasa (and some antibiotics) isn't going to be sufficient and may lead to problems in the longer term

Please take no offense to me saying that, I'm just worried about you.

 

[Prince]

Thanks for ur opinion David. I have learned that when it comes to crohns people and Drs have different opinions. Some are even contradicting like bottom up vs top down treatment. I'm sticking w the bottom up one but already taken X-ray and all preparations to start remicade if the slightest problem occurs. Things have been much better since my diagnosis and hopefully this will continue. My new diet involves cutting all inflammatory foods such as fried food, white bread, red meat and adding anti inflammatory foods such as wild salmon, avocado, olive oil and so on. With the speed of my recovery my colon may be clear in 6 months to year, that's when I will consider biological treatments. Again thanks for your opinion and I greatly appreciate it

 

[jmule24]

@Prince -

I've been on Remicade (Inflixmab) for 10+ years now with NO side effects other than feeling crummy the next day. After that I feel GREAT!!!! I've never been healthier in my life and I've been through quite a bit with my Crohn's, they tried every drug you can think of before turning to Remicade, which at the time was "new" to treating Crohn's so I understand your fears.

Hope this eases your mind slightly :thumright:

-Joe

 

[kiny]

I think something is left out in the discussion of the top down approach sometimes and I think it's really important.

The issue as I see it of the top down approach is twofold, one is the increased danger of long-term use, but another issues is underappreciated.

It's the issue that with a top down approach no one considers what happens if infliximab stops working. When this happens, in some people there is a change in T cells, this evens out, but for a number of months after the infliximab therapy, people are extremely vulnerable for relapse, and relapse will likely be much harder because of the prior infliximab therapy, especially in people who were on it long-term, changes in T cells are dose and duration dependent. I think it's also important that the GI has a plan and knows what to do when infliximab stops working.

 

[David]

Kiny, link to that study please? Thanks!

 

[kiny]

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017890

this details the changes of one particular T cell type, those T cells need to in balance since they regulate each other, this is one of mechanics why our inflammation isn't completely out of control, The change in T cells of remicade is dose and duration dependent, at least a subgroup of people who go off remicade will have an unbalanced T cell demographic, (this should even out after a number of months I have been told) it's that delicate balance of T cells that is keeping inflammation somewhat under control.

 

[kiny]

(I'd like to say that I'm not suggesting anything, I hope you just take this as advice Prince, I have a whole shoebox of pentasa next to me, all I can tell you is that it worked well for me long-term, but in case of a flare you need stronger stuff to get you over the flare, augmentin or pentasa aren't going to do it, I am just as worried as David that you put so much faith in pentasa. I have had access to pentasa for 12 years, got crohn's disease as a child, my GI doesn't care and subscribed me a whole box of the stuff since he doesn't care if I take it or not, he knows that it might work long-term but pentasa is extremely light medication and like some studies have shown, it is marginally helpful)

 

[kss]

My experience with Remicade was that it worked for years effectively and then slowly lost it's efficacy. My physicians were really unaware this could happen and I ended up in the hospital for a long time. My point being that when it stopped working I was much worse off than before I started taking it.

There's also this thread that I just started because I was so shocked at how dangerous Remicade is: http://bit.ly/WQp73n And then kiny pointed out that it's just not just Remicade but all the TNF-alpha blockers.

 

[David]

Remicade is a potentially dangerous drug, no doubt about it. But improperly managed Crohn's disease is much scarier in my opinion. Of course, if the GI isn't good at managing Remicade, then you get a double dose. Improperly managed Crohn's AND an improperly managed, potentially dangerous medication. It's a tough situation for anyone having to make this decision