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12-15-2009, 06:16 PM   #1
metahi
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Location: boston, Massachusetts
Cimzia

Hi Everyone

My Doctor is starting me on Cimzia as a maintenance med for my Crohn's - anyone have any good reviews? or bad...

I tried searching the forum and didn't come up with many concrete responses.

For those on Cimzia:
Did you have a decrease in BM's?
Did you get to the "Solid state" BM's?
Any bad side effects?

Thanks!
12-15-2009, 07:59 PM   #2
Peaches
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I'm interested also as this med might be in my near future Metahi. Good luck and let us know how you progress with it. We don't have very many users on this site who are taking it I think - maybe because it is the newest of the bioligics?
12-15-2009, 08:17 PM   #3
Jeff D.
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I'm on it but I can't comment on your first two questions as I have a lot of scar tissue and need to keep my BM's fairly liquidy so it doesn't irritate the scar tissue further. I haven't had any bad side effects although since I started getting them in my stomach I seem to get a bad stomach cramp, more in my muscle and skin then actual intestines, but it only lasts a few minutes. When I got it in my quads I would get some pain while driving for a few minutes after the shot but it got better. A few days after and I'm back to normal.
12-15-2009, 08:46 PM   #4
Peaches
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Hmmm - so Jeff - is your goal to stop the rectal inflammation, but not to get your actual guts too quiet as to give you normal BMs? Sounds kinda tricky...... How long have you been on the Cimzia?
12-15-2009, 09:02 PM   #5
slice
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I've been on Cimzia about 5 months. The only side effects so far are increased fatigue the day or two after taking it. Also, starting two months ago I got a bit Nauseous on and off days 3-6. So for my last injection when I started to feel sick I took folic acid and it completely took care of it.

Strangely it's really been the last couple of months that it's started working. It started helping with my arthritis and uveitis after the third loading does but it was 3 plus months in (right after the nausea started) before it really helped my bowels. Now it seems my joints and uveitis are not as completely taken care of but my bowels are much better. It's like it can't do it all at once so it picks and chooses.

On the flip side I don't feel overly immune surpressed and aside from a short cold have not been sick at all. It's also pretty easy to inject after you get used to it (not as painful as what people describe with humira) and you can't beat once a month. In general people either do well with it or not but not many people are too bothered by it or allergic to it so that's cool too.

Good luck with it metahhi and let us know how it goes!
12-15-2009, 10:36 PM   #6
saidinstouch
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I've been on it for two months and so far that combined with entocort has been really good for me I think. The only side effect I can comment on is nausea that started a month ago then faded for a couple weeks. It returned today (5 days after my last injection) but wasn't terrible. We split the dose this time so instead of 2 every 4 weeks gonna try 1 every 2 weeks so I think the nausea will be less this time hopefully. I'll let you know if the nausea persists, but I think the dose split will do the trick. Also, promethazine worked really well to deal with the nausea for a couple days and is fairly cheap.
12-15-2009, 10:41 PM   #7
metahi
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Will do - my Crohn's is a bit different than Slice & Jeff's - terminal/distal illeum, with secondary involvement of the transverse colon due to wrapping of the TI. I have stricturing and possible internal fistula's but no other involvement. Most days I am "normal" and have a couple of obstructive episodes a year - dianosed at 18, now 35 and had a "flare" September and October which was calmed by Entocort and Cipro. I was concerned about the skip to biologics but went in for a 2nd opinion this past Monday and the top specialists in Boston are tending to sway towards the "top down" approach. I was on Pentasa for 13 years and was taken off due to the belief that it was merely a placebo by my current GI. I was med free until October and now the jump to Cimzia - a bit worried but with the 2nd opinion confirming...not as much!
12-15-2009, 10:53 PM   #8
Jeff D.
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I've been on Cimzia for about a year now as a maintainance drug. It's done it's job so far. All of my problems are now scar tissue related and not really Crohn's problems as I don't have any active Crohn's. I just don't have remission of symptoms due to the extreme narrowing in my rectum
12-16-2009, 12:50 PM   #9
CrohnieCarolyn
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I have been on Cimzia since the beginning of October after Remicade failed and so far I have had three flares so I am heading back to the doctor...Hope you get more success with it!
12-16-2009, 02:27 PM   #10
metahi
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When you say you have had three flares, what are your symptoms? I am curious b/c what I considered to be flares for more than 16 years were really obstructive episodes that would linger for 24-48 hours and then I would be fine with the exception fo the usual 3-6x a day bathroom trips.

CrohnieCarolyn said:
I have been on Cimzia since the beginning of October after Remicade failed and so far I have had three flares so I am heading back to the doctor...Hope you get more success with it!
12-19-2009, 04:22 PM   #11
BWS1982
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metahi said:

For those on Cimzia:
Did you have a decrease in BM's?
Did you get to the "Solid state" BM's?
Any bad side effects?

Thanks!
No decrease, no solid ones, and I stayed in what has now been a 28 month long flare. Side effects were unnoticeable, if existent (I'm sure they were at some minute "behind the scenes" level), however, so were "effects" ...I had just failed on Remicade after a six month stint (trying both half the space between infusions and double the dose) and had to give up Cimzia after 6 months as well, also trying half the frequency between injections.

Luckily I had not a single bit of soreness or anything at the area of injections, just a "lump" where the substance remained until it became absorbed. The shots hurt less than blood draw ones too, so there was virtually no pain involved.

I think there actually are "newer" biologics, but this is the newest one that is also widely used and fully approved. The others are finalizing their phase 3's and FDA approvals, or they are still getting their "off-label" statuses removed so they can be used on Crohn's/IBD specifically (such as Enbrel, although I don't know if that's still a viable drug for IBD now, but it was to some). Some universities and well connected GI's can get you into Vedolizumab trials and there are even others as well. I was told by my GI, a VERY knowledgeable one (he was one of 6 GI's in the nation to be at a local meeting with the Tysabri manufacturer recently to discuss the current state and understanding of the drug as far as risk and IBD application), has said in the next 3 years or so, IBD treatment is going to have a huge shift in dynamic and focus, and will be almost revolutionized. Hopefully we can all hold off that long if we are in a holding pattern of sorts.
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-diagnosed with Crohn's Disease in Sept. 2006, currently 28 years old

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Last edited by BWS1982; 12-19-2009 at 04:35 PM.
12-19-2009, 05:20 PM   #12
Peaches
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I hope your doc is right on that last bit Benson - I'd love to see some new really effective drugs out with less side effects (but then again- wouldn't we ALL).
12-19-2009, 05:40 PM   #13
BWS1982
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Vedolizumab is one of several shining lights in that, and he called it-- if it works out as planned-- the "silver bullet" because it would bypass the brain target and hit the gut specifically, it's like "Tysabri for IBD" (my words, not his). He said without PML risks, Tysabri would be the "miracle drug" that everyone needs, beating out Remicade, because he says that everyone of his patients who's ever been on it and hit remission, has never had a relapse. That is monumental.
12-19-2009, 07:27 PM   #14
Peaches
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Holy crap - I just realized that Vedolizumab is the drug my hubby is a medical advisor for on the study team with Millennium! He seems excited about it as well - said he wants me on it if I fail Remi - but he would have to get off the study in order for me to be able to do it. Not sure if that could happen or not, still hoping Remi is going to keep working for me but it isn't feeing like it is. I hate this......I hate it for Mike too since he has been on so much different stuff.....
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