Gonna start Cimzia next week. So here's my journal...

Long story to follow... :)

So it's been just over a year since my Crohn's diagnosis. Up until mid September, I was on 25 mg/day pred, 100 azathioprine, bi-weekly humira. The goal has been to see if we could get a combination of meds that would allow me to reduce/remove pred from the equation. In mid September, that became more of a priority; I went to the opthalmologist and discovered I had severe "occular hypertension" (glaucoma). They firmly believed it was because of the prednisone. So my GI increased my azathioprine to 150 mg/ day, and put me on weekly humira. This allowed me to drop to 20 mg/day of pred, and was going to drop another five mg when I had a "side effect" to the weekly Humira: fatigue that was un freaking believable. I couldn't get out of a chair. Walking up a flight of stairs caused my legs to feel like I'd just done a two hour leg workout.

So I had to discontinue the Humira. I've had to increase the pred back up to 25 mg/day, and I'm still not doing really well on the crohn's scale. I went back to my GI after the Humira episode. He said we were done with the Humira, and gave me my choice of other anti TNF's to try. His recommendation was Cimzia. So of course I went with that. His office people went to work, got my insurance co's approval, and now I have a Cimzia kit sitting in my fridge. Unfortunately, I've had both a URI and my 18 month old daughter has shared her GI bug with me. GI bugs on top of Crohn's is just nasty, nasty, nasty. Anyway, I can't start the Cimzia until cleared of all infections.

The Cimzia people insist that a home health care provider comes to your house to administer the Cimzia injections. Sheesh, I've been doing my own Humira shots for almost a year with no problems. I'm hoping that after a few visits I can talk them in to me doing them myself; I hate having to arrange yet another appointment into my busy schedule. I have the kit sitting in my fridge right now.. I'm so tempted to just take it out and start jabbing... but I'll play by their rules

I'm really hoping that Cimzia has more of an effect than Humira did. The cocktail I had been on (20-25 mg of pred, 100 azathioprine and bi-weekly humira) was fairly effective, but I (and my GI) hoped for better; we *both* want me off the pred. So once again, I'm hoping that the 150 azathioprine and Cimzia will allow me to get off or at least lower the pred. The glaucoma is being controlled pretty well by eye drops, but I'm still not having the best of times with the other pred induced side effects.

I'm going to share my Cimzia experiences with you guys/gals in this thread, and am hoping that you all will share yours here as well.

I'm interested in hearing everyone's Cimzia experiences, but I'm *especially* interested in hearing from those of you that didn't really have a very good response to Humira, but that have responded well to Cimzia.

I'm going to wait until things settle down after Thanksgiving to get started with the Cimzia shots. I'm hoping to start next Monday.

Anxious to hear from you guys/gals...

I was on Remicade for 3 years every 8 weeks and just switched to Cimzia in September. So far it has been fine. The first 3 injections were every 2 weeks and I was having major fatigue afterwards. Now they are every 4 weeks and I am not quite as tired. I mainly have very low appetite (have to remind myself to eat), one sinus infection, etc. My GI said that Cimzia would probably be self-injectable in about 2 years and has to be done by a home health nurse since just approved by FDA in April this year. I like the nurse coming out as I would have a hard time giving myself the shots. They are here for 45 minutes because it has to be mixed together and the needle looks big but doesnt hurt much. Remicade was becoming a big major ordeal, couldnt find veins for the IV, had infiltrations, IV's in my feet and nurses recommending a port a cath be surgically implanted in my chest for the infusions so my GI said lets switch to Humira or Cimzia. I wonder about the side effects long term some times. I hope you have good luck with the Cimzia. The first 3 doses were free and and then they do have co-pay assist for 6 months to 1 year through a Cimplicity program too.

Thanks for the responses, guys/gals.

I finally started Cimzia today. A very sweet lady at the Cimzia help line had to go above and beyond to get the local Cimzia trained home health nurse to call me. It took five days of numerous phone calls. Anyway, I digress...

The guy showed up this morning. I was amazed at how long it took to reconstitute the solution. I must admit, I was getting a bit anxious about the whole thing. The needle is huge (23 gauge), long, and the solution is *very* thick. Seriously thick. Like it took him *five minutes* to draw the stuff from the bottle into the syringe. And no, I'm not kidding.. it really took him five minutes to draw the stuff into the syringe. He'd pull the syringe plunger back, and get about one drop out of the bottle every fifteen seconds. Did I mention how thick this stuff is??

I'm usually *very* tough about needles, shots, all that stuff, but I was actually getting nervous. So while he finished drawing the syringes, I got out an ice pack and iced up my thighs.

This guy was a pro. I didn't feel *a thing*. Probably the most painless shots I've ever had in my life. These shots are sooooooooooo much easier and less painful than Humira, it's not even comparable.

Within about two hours after my Humira injections, I'd start getting fatigue and the "Humira headache". I'm *very* happy to report that it's been five hours since my Cimzia injections, and I have zero fatigue, and no headache. Wow, I hope it stays this way.

I'm sure hoping I have a positive response in the Crohn's department quickly; I've cut the prednisone back to 15mg/day due to very bad mood swings, and it seems that anytime I go under 20, I start to flare. I've had four very bad cramp sessions so far today, two of which were completely non-productive; just sit in pain on the porcelain while nothing happens. Yeesh, I hate that. It's partly my fault, though. In addition to cutting back on the pred, I had a glass of orange juice yesterday. Stupid, stupid, stupid.

Anyway, enough of my ramblings... I'm still anxiously awaiting to hear from everyone with their Cimzia experiences.... Love the stuff that's been posted so far.... keep it coming! :)

Azstrait said...
I was on Remicade for 3 years every 8 weeks and just switched to Cimzia in September. So far it has been fine. The first 3 injections were every 2 weeks and I was having major fatigue afterwards. Now they are every 4 weeks and I am not quite as tired. I mainly have very low appetite (have to remind myself to eat), one sinus infection, etc. My GI said that Cimzia would probably be self-injectable in about 2 years and has to be done by a home health nurse since just approved by FDA in April this year. I like the nurse coming out as I would have a hard time giving myself the shots. They are here for 45 minutes because it has to be mixed together and the needle looks big but doesnt hurt much. Remicade was becoming a big major ordeal, couldnt find veins for the IV, had infiltrations, IV's in my feet and nurses recommending a port a cath be surgically implanted in my chest for the infusions so my GI said lets switch to Humira or Cimzia. I wonder about the side effects long term some times. I hope you have good luck with the Cimzia. The first 3 doses were free and and then they do have co-pay assist for 6 months to 1 year through a Cimplicity program too.

Thank you very much for your response! I'm sorry to hear  about the fatigue. Besides the BM problems, the fatigue is the worst Crohn's symptom for me anyway. Then throw a drug that causes fatigue on top, and I'm about worthless.

Has Cimzia given you any relief from your Crohn's symptoms? If so, how long did it take from the first dose to see an improvement?

Well, it's been four days since the Cimzia shots. I've lowered the pred to 15 mg/day. Mixed results/feelings so far.

I got *zero* fatigue from the Cimzia. That right there is enough to make me stand up and cheer. I did get a bit of a headache, but certainly no worse than I got from the Humira, and it didn't last long.

My energy level is *much* better than when I was on Humira. In fact, I haven't had this much energy since I was at 40 mg/day of pred.

CD symtoms are kinda mixed, really. Yesterday and the day before, I had some pretty bad cramping sessions, a couple of which were non-productive (just sit and cramp with no...umm.... "results" if you know what I mean). Today has been pretty good. What I consider to be remission for me is to have one to three urgent crampy BM's in the morning, shortly after getting up, but then having no more for the rest of the day. Today was just one urgent crampy one after breakfast, and I've been fine since. Combine this with the fact that I have no headache, much more energy, no joint pain, no muscle pain, and I'm pretty happy. I did pick up a URI yesterday, but it's just a cold, so no biggie.

So anyway... no real improvement in the CD department yet, but no nastiness, either.

ZenaWP said...
I was on Cimzia for about a year (in a clinical trial). I had no problems other than a white whelt around the injection site...no headaches, fatigue, etc. BUT, I was getting it every 2 weeks, not once a month like it is now approved for. Now that the trial is over, I'm on Humira. I have considered going back to Cimzia, but don't think I can do it just once a month. When I was getting it every 2 weeks, I still had a couple of days when it seemed like it wore off...don't think I can handle two weeks of every month with it having worn off. The only difference I've noticed on Humira is that it took longer to really work at it's strongest and that I get itchy red whelts at the injection site. Oh, and yes, Cimzia is much less painful! Good luck on it, I hope it works for you. It kept my gut in remission but just didn't take care of the arthritis like I'd hoped (although neither is the Humira).

Thanks for the info! Yeah, the Cimzia really is much less painful.

What a difference eight days can make (since my last post). I'm *very* happy to report that the Cimzia has knocked my CD symptoms to the canvas. I honestly haven't had such relief from the CD symptoms since I was on 40 mg/day of prednisone. For the last six days, it's been (almost) like I don't have CD; no cramps, decently formed poops (which never happens for me. Excuse the visual, but it's either always D or like oatmeal), and normal feelings of "Hmmmm. I guess I should go poop when I get the chance." Wow... that never happens, unless I'm on very high doses of pred. I've tapered my pred down to 10 mg/day for the last week, and still haven't flared. I normally flare at 20 mg or less. It took six days for the Cimzia to start having an effect.

Humira never even came close to giving me this much relief. I really didn't have much faith that Cimzia would help after I got hardly any benefit at all from Humira; I just figured that TNF blockers weren't going to work for me. But when you have CD, I guess you need to give everything an honest try, even if you don't think it's going to work. I'm sure glad I did. The results and side effects I've gotten Humira vs. Cimzia don't even compare. It's like they're two *completely* different categories of drugs. With Humira, I got terrible fatigue, headaches, and hardly any CD benefit. So far, with Cimzia I got a very slight headache, *no fatigue*, and *fantastic* CD symptom relief. Honestly, I'm stunned.

Moral of the story: If you have failed a TNF blocker, and haven't tried another one, thinking that they just won't work for you, you might very well want to try another one. NOTE: I'm not a doctor, and I'm not trying to give medical advice here, I'm just saying that just because *one* TNF blocker didn't work for you, that doesn't mean that *none* of them will work for you.

So my current meds of 150 mg./day Azathioprine, 10 mg/day of pred, and Cimzia has kept me in full remission for a week now. I'm going to continue to taper off of the pred, but I've been on it for so long it's going to take another couple weeks to get all the way off of it.

I am *very* happy and impressed with Cimzia so far. I'm keeping my fingers crossed that it'll stay effective for a long, long time to come.

Now if you'll excuse me, I'm gonna take my wife to a Christmas concert at the local mall, and I'm not even going to keep track of every piece of porcelain between here and there.

Great news!!!

I had the second round of shots yesterday. They went just as well as the first time.

Yesterday was just an average CD symptom day. Not good, but not too bad. I went ahead and lowered the pred another 5 mg today, so now I'm at 5 mg/day.

Today has been yet another average CD symptom day, too. Not good enough to go out and do the Christmas shopping I was hoping to get done.

C'mon, Cimzia... show your stuff!

Rider Fan said...
I usually taper by 1mg at a time once I get to 10mg, to make it easier on myself. Just a thought, CD. Good luck and keep us posted!
Mike

I woke up this morning, shaking like a leaf, dizzy, feeling like I was going to pass out. I barely had the strength to get out of bed. I immediately ate a protein bar and took my prednisone. Within an hour, I was better. This was after dropping from ten to five mg of pred yesterday.

I'm definitely going to take your advice and go down 1 mg at a time. Wow, I had no idea pred withdrawal could be so brutal. The only problem is my tablets are 10 mg each. Makes it really hard to take 1/10th of it off. Guess I better call the GI for a script of 1 mg tablets.

My Cimzia doesn't seem to be doing much for me. I finished up my 2 week dosing about 3 weeks ago & will take my next shot next week. At least it doesn't give me arthritis & fatigue like the Humira did.

know this is from an old post...been on this since December 08. Though I do better than the Humira (down to only 5 mgs of prednisone after 2 years), it does not seem to be as good as the Remicade for the arthralgias. I soooooo need the injection now...I feel better, only got 2 days to go (all the meds started to wear off, the Remicade I was on 10 mg/kg every 4 wks at the end, Humira: might as well spit in the wind for all the good it did).

I only get the injection monthly...but it is wearing off at the third week. I have known remission, I WANT IT SOOOO BAD. I've tried everything. The one thing that makes me feel good is the prednisone (10 mgs or greater). I am so tired of meds...I have pill fatigue. I don't want to have to take another pill again, not even a vitamin!!!!

My doc is frustrated, I am frustrated. Nothing is working like it should. Am I just weird? How have you all done on this med?

I just started cimzia two weeks ago to treat RA. Is anybody here still using? I hate the thought of being on this for the rest of my life, but I cannot deal with the RA either. Much advice on how to make it work is soooo needed. I really hope all of you are doing well.

Just wanted to post a quick note about my Cimzia experience so far. I have a serious fear of needles and have been very anxious about self-injecting. I've been in remission for the past year and a half, but after I started developing antibodies to Remicade last November, I have not been on anything. Thanks to my 15-month old, I have been sick with either a cold or sinus infection all winter long however and have not wanted to start the Cimzia while I was already sick.

I finally am feeling well and worked up the nerve to give myself the two shots in my abdomen today! I can honestly say it hardly hurt. I did get a little faint towards the end of each shot, but I have a tendency to do that when needles are involved. I can't believe I was able to do it. I had pulled the Cimzia out of the fridge a couple times before to warm up to room temperature, but chickened out. I was going to have my husband do it this weekend, but I just reached a point today where I just needed to get it over with. Now if they could just get my full dose in one shot (or better yet, a magic pill!), I will be a happy camper. Hopefully this will help keep me in remission!