Need some opinions on starting treatment

[chrisnsteph1022]

I've been on Apriso for 3 years, Cimzia for 1 year and azathioprine for 4 months. Nothing is working. At my last appointment, my GI told me he doesn't know what else to do for me and wants me to see an IBD specialist. However, I asked if I could try Remicade before going that route. He's fine with that, so I'm pretty much deciding my own treatment course.

Here's my question: should I stop all 3 drugs before starting Remi? The aza never did anything for me (and I had the test to make sure I was on the correct dosage). I'm also afraid of the aza+biologic risk of lymphoma, so if I stayed on it, it would be short-term. I'm just wondering if staying on aza will make the remi work better? Even though it didn't help the Cimzia.

Also, I have the option of taking Entocort to help until the remi kicks in so I'm trying to weigh that option. I dislike steroids (and refuse pred). I may just try to tough it out. It's been 13 months...what's another few weeks? Plus, I want to know if the remi is working and not wonder which drug is helping.

I have my appointment tomorrow so I'll be joining the Remicade Club soon!

 

[s nunn]

remicade

I've been on Apriso for 3 years, Cimzia for 1 year and azathioprine for 4 months. Nothing is working. At my last appointment, my GI told me he doesn't know what else to do for me and wants me to see an IBD specialist. However, I asked if I could try Remicade before going that route. He's fine with that, so I'm pretty much deciding my own treatment course.

Here's my question: should I stop all 3 drugs before starting Remi? The aza never did anything for me (and I had the test to make sure I was on the correct dosage). I'm also afraid of the aza+biologic risk of lymphoma, so if I stayed on it, it would be short-term. I'm just wondering if staying on aza will make the remi work better? Even though it didn't help the Cimzia.

Also, I have the option of taking Entocort to help until the remi kicks in so I'm trying to weigh that option. I dislike steroids (and refuse pred). I may just try to tough it out. It's been 13 months...what's another few weeks? Plus, I want to know if the remi is working and not wonder which drug is helping.

I have my appointment tomorrow so I'll be joining the Remicade Club soon!

I had a bad reaction to Remicade after about a year and ended up in hospital with a bad rash - the dr want me to start humira and I'm really hesitaant

 

[s nunn]

remicade treatments

I had a bad reaction to Remicade after about a year and ended up in hospital with a bad rash - the dr want me to start humira and I'm really hesitaant

Have you read all the side effects of remicade??

 

[Emily]

I'm glad your gonna start Remicade, I hope it is a miracle worker! Never been on Remicade so I can't give good opinions on the first things you were talking about but...
Re trying Entocort: I hate pred with a passion but am an advocate of Entocort big time. It's like the magic of pred on your intestines minus all the horrible side effects of pred. It really was great for me and kept me sane in the months before my surgery. It might make you feel a lot better while waiting for Remicade to kick in, it's a great short term fix.

 

[chrisnsteph1022]

Yes. They're no worse than Cimzia. It sucks, but nothing is working, so I have to take the risks.

 

[ThanksP]

I went from Cimzia, apriso, and 6MP to Remicade. I switched doctors when the Cimzia cocktail failed and he told me not to even bother trying Remicade because it wouldn't work. So in between switching docs, I was on nothing. Now I am on Remicade, and only Remicade and it's been working great for me. In the interest of full disclosure, I also started an awesome juicing regimen at the same time and I have to say, I swear it has helped immensely. I've been on Remicade and Remicade alone since September. I figure I'll save the 6MP or Imuran in case the Remi starts to fail me as well. Until then, I'm not touching it.

Interesting that a lot of people seem to drop off the Cimzia right around the one year mark.

Good luck to you! I figure that it can't hurt to try the Remicade if Cimzia stopped working.

 

[SarahAnne]

Stephanie - I'm totally not qualified to give advice, so here goes. (just kidding!)

If it was me, I'd probably just start with the remicade for the same reasons you already mentioned. I suppose you could add the aza later if you (or doc) felt the need. I definitely have a "less is more" attitude when it comes to medication, only because I hate taking a lot of pills. I'd rather add to what I already take if it's necessary, rather than take a lot of pills. I have problems sorting out which ones cause which side effects. That being said, I'm probably going to have to go on a maintenance med along with my remi since I've had surgery. Pills, no pills, surgery, our options totally suck any way you look at it.

 

[Johnnysmom]

Stephanie,

I was just reading some statistics, taking remi with another drug increases your remission rate about 12%. I know there are concerns about the increased risk of lymphoma but I also read most of those cases are adolescent boys/ young men who have been on treatment for a while. My son falls into that category so I do worry about him but as an adult female I would not worry as much. I wish I could post links as to where I got this info but I am not that handy with the computer. It was a thread by Izzi's mom I believe and Dustykat has posted too. It is recent so you can probably find it.

Good luck,
Tiffany

 

[Grumbletum]

Hiya
I was on Pred tapering and had been on Aza for about 2 months when they put me on Remi to deal with persistent inflammation. They advised me to keep taking the Aza as it helps prevent the body rejecting the Remi.
The combo seems to have worked and I think the idea is to stay on Aza as a maintenance med if I don't need more than the three infusions.

 

[PaulPhoenix]

I'm in virtually the same situation except my GI wants me to start Humira rather than Remicade. I've been on Aza for 3 months and it seems to have done something but not enough to bring the inflammation down completely. I've asked to give it a little longer because I read it can take 3-6 months for full therapeutic effect to be felt.

They're not keen on entocort because I have inflammation in the descending colon as well as the ileum. I'm going to mention predfoam enemas in case that might work with the entocort.

Have you thought of trying an elemental diet for a couple of weeks? I've not tried it yet and if the remission rates are only slightly lower than steroids why not while sitting around. No side effects etc...

Oh and LDN might be worth a try. I'm trying to think about how to mention that one to the GI. I expect he'll be very cynical

Good luck. I'll keep my fingers crossed for you!

 

[Pipergirl]

I would defiantly recommend remicade! it worked fantastic for me! but it sounds like you need to get a new, more aggressive GI doctor. you seem to be more of the leader in the situation. I am on the 6mp, pred. and the others in my signature. My GI is having me taper off of these while on the remicade. his goal is to get me completely off of the other drugs and just on the remicade and sulfazine. hopefully you figure out a treatment that works for you. and with the side effects, they are scary, but most people dont experience them, and they give you pre-meds of Tylenol and benedryl to fend off whatever small allergic reaction may happen. GOOD LUCK

 

[chrisnsteph1022]

I asked him last time if he had heard of LDN and he had not. I printed out an abstract from the American Journal of Gastroenterology about the effects of LDN on Crohn's. I'm planning on giving that to him today. Maybe he can read up on it and prescribe it in the future if needed.

I am more of the leader in my care, but I was like that with my last GI, too. I take their opinion into consideration, but I figure I know my body better and do a lot of research into different treatment options. As rare as Crohn's is, I can't imagine each GI has a ton of Crohn's patients (I live in a town of about 30k). I know he does have other Crohn's patients, because I asked him when I interviewed him. I don't know how many, though. I do know he's not comfortable prescribing methotrexate or Tysabri, which is why he wanted me to see the specialist at the IBD clinic at Vanderbilt. This Remicade is my last shot at remission before going that route.

 

[chrisnsteph1022]

He read the print-out on LDN and said he wouldn't prescribe it. Oh well!

Here's the plan: starting Remicade on Friday (that was quick!). Switching from Apriso to Lialda and staying on Imuran. He refilled my Zofran and oxycodone, too. He also gave me Entocort, if I decide to take it.