Which one?

[crohnicaly stinky]

I saw my GI for the second time yesterday as a follow up on the Lialda. He asked me how things had been with it and I said basically it's been working OK, no D and not any bad symptoms. He reminded me that his preference is a biological but left it up to me. He said just listen to your body and if your starting to have issues call me. I think it's a pretty honest approach. I asked him which biologic to take and he said it is really up to me. Remecade, Humira, cimzia, he said there are pros and cons to each. Do I want to self inject weekly or come in every 8 weeks for a treatment. So how do I decide?

BTW I do feel like the Lialda is working but I keep thinking about what the doc said on my first visit. I told him my last GI suggested Humira and when I read the information it said, "when traditional treatments stop/ don't work" So I said I have never had any other treatments why go to the big gun right off the bat? He said the thinking now is that it is better to try and prevent scarring and other damage from the start rather than wait. I am thinking he is right and why not go big guns and try to preserve what I have until new treatments come out.

He also offered to put me into a clinical trial for vertlizumab. I can't find it on google and so I am not sure what it is.

 

[Regular Joe]

Hi Stinks...

His approach might be the "top-down" treatment protocol. It's not the most common approach, but it is very effective. There is good theory and rationale behind it. Here's a very basic link to the "debate" You can Google for more.

http://www.ncbi.nlm.nih.gov/pubmed/17827952

 

[sunflower]

It is now the protocol for RA. They used to limp you along until you got really sick, then tried to play catchup. Now the theory is to prevent as much damage as possible in the beginning. That makes total sense - for both diseases.

The deciding part is hard, but just pick one - eeny meeny miney mo! and try. I did Remicaide a few years ago and it was WONDERFUL! The only thing I didn't like is that I had my treatments in a chemo ward. That was Hard. Most people were there for cancer treatments.

I had to stop because I started getting constant sinus infections. But, I wish I could take it again. And you have to be able to spend the time getting the infusions. I was able to at the time, but not all jobs are that understanding.

 

[crohnicaly stinky]

Joe, thanks for the link I'll read through it.

I've read somewhere that people start getting flares before they feel them and so by the time the "truck" finally runs over you, you've already been going down hill and possiboy suffereing damage for a long while, up to a year I remember reading. Have you read similar?

If that's the case I'd think thats all the more reason to get on the hard stuff.

 

[crohnicaly stinky]

Sunflower thanks for the post. I like the every eight weeks rather than weekly self injections, and right now my job would allow for it.

I'm no doctor but occasionally I get a little sinus infection and I have good luck with some, dang it, drawing a blank, the disinfectant in a yellow box with a unicorn on it, shoot brain kick in. Anyway put some on a cue-tip (sp?) and swab it around in your nose. Feels like you have a nose full of Vaseline but it works. Probably not recommended.

 

[sunflower]

Thanks stinky! I will look for it.

Sinuses are my achilleas(sp?) heel, so you may not have that side effect. I have had 2 surgeries and (yeah for me) probably need another one. I grow ginormous polyps in my sinuses and so of course that is what the Remicaide would pick on.

And, though I haven't done much research on this, I would tend to agree from my own experience that you are very sick before you get blind sided by this stuff.

From my first colonscopy, I learned that there were mere inches of my colon that were not inflamed and/or ulcerated. I knew I was ill, but had no idea of how bad. Plus, I think we get used to feeling awful and don't notice unless we are BAD. This starts happening long before we seek medical attention for the first time. And then, it is sometimes years before they figure it out.

Cheering for you to keep your digestive system as healthy as possible!!

 

[My Butt Hurts]

He also offered to put me into a clinical trial for vertlizumab. I can't find it on google and so I am not sure what it is.

Is it vedolizumab?
http://www.crohnsforum.com/showthread.php?t=9066
Here is a thread on it, and if you do a search on here with that spelling, you should find some more threads too.
Rob is on it right now I think, and Shmooda was too, but I haven't seen her here lately.

As far as deciding which high power med to take, your insurance might make the decision for you. Some of them want you to go in a certain order.
Both Remicade and Humira are very easy to take. I started with Humira and it worked amazingly well, but only for a short time. The injections were not a big deal at all. The biggest problem was making sure that we were home to get the package out of the sun because it was delivered to the house with ice packs.
Remicade is working very very well for me now, and the only problem for some people is taking off work every 8 weeks (2, and 4, for loading doses). For me, I look forward to my Remi infusions.
I haven't had negative side effects with either one.
Whichever one that you go with, I wish you the best of luck!

 

[crohnicaly stinky]

Thanks My Butt Hurts. Love that screen name BTW. My doctor has the worst handwriting ever, so maybe that's it. I'm leaning toward remecade but great point on insurance, however my insurance rocks on drugs.

Oh and Sunflower thanks for the well wishes! I wish the same for you!

 

[sunflower]

Stinky, your screen name is rather clever, also! LOL!!

I WISH I could still take Remicaide. It was the first time in years that I had felt well. And it put me in remission for a long time. I am tempted to beg my Gstro into letting me be on it again - side effects and all. Just to feel that well again.

 

[crohnicaly stinky]

I'll have to search the forum on side affects for remicade. One trouble for me and these drugs is I work with my hands and so I get lots of cuts, work in lots of dirt and muck and because I work on air conditioning systems, there is always a chance for mold, mildew, and general biological gunk around. I really can't have a depressed immune system.

 

[Crohn's 35]

My two cents, to I think Remicade is the most potent, mouse protein (hope you like cheese lol) Humira is I think the same as cimzia but heard Cimzia stays in the body longer. I was allergic to Remi, Humira was too mild and Cimzia aint here ;(.

 

[crohnicaly stinky]

I love cheese! I like cheesy jokes and I was thinking for Fathers day my family should take me to where I can get some cheesecake! yum I love that stuff. OK but seriously thanks for the info.