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

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CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 11/25/2008 2:47 PM (GMT -7)   
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 eyes
 
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...
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Hoping to start Cimzia around Thanksgiving. 
 
I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/25/2008 7:51 PM (GMT -7)   
good luck!
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Azstrait
Regular Member


Date Joined Dec 2005
Total Posts : 259
   Posted 11/26/2008 8:53 AM (GMT -7)   
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.
42 yrs, diagnosed Crohn's 1988, 2 bowel resections, 1 strictureplasty, 1 botched exploratory surgery, 1 emergency surgery for ruptured ulcer, Remicade every 8 wks, Immuran 100 mg, Protonix


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/27/2008 8:43 AM (GMT -7)   
Hi Best of Luck and waiting to hear how it goes? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 12/4/2008 3:03 PM (GMT -7)   
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! :)
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Hoping to start Cimzia around Thanksgiving. 
 
I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 12/4/2008 3:12 PM (GMT -7)   
Kasper87 said...
Perfect.
Humira i stopped responding after about 3-4 months. Though i still took ot for a long time.

I switched to Cimzia and i felt like superman for awile. Best i felt in years but i don't do bio's very well. Nothing serious like lupus or swollen nodes but i get the fevers, the itching the dry skin and all the other B.S.

Cimzia is fine but do yourself a favor and stay away from the 6-mp. Cimzia stays in the body for nearly a month at a time...I recommend Entocort + Cimzia over 6-Mp.

P.S. Prednisone is a miracle drug no matter what :D :D...

Kasper87, did the Cimzia stop working for you, or did you quit due to the side effects?
 
The doc is closely monitoring the azathioprine, and not just CBC but enzyme levels, the whole shebang. It makes me much more comfortable taking it knowing that he's really keeping an eye on it.
 
Yeah, prednisone really is a miracle drug. I just wish they could take the nastiness out of it, cause it sure seems like *nothing* else is able to knock Crohn's to the canvas like pred can.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Hoping to start Cimzia around Thanksgiving. 
 
I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 12/4/2008 3:14 PM (GMT -7)   
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?
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Hoping to start Cimzia around Thanksgiving. 
 
I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


chocolate_stains
Regular Member


Date Joined Dec 2008
Total Posts : 61
   Posted 12/4/2008 6:00 PM (GMT -7)   
Good luck with the Cimzia.


Something to consider if you ever need to try another treatment option is Cortisol. It is another steroid but is bio-identical to the cortisol produced in the body, so at physiological doses it does not produce the same side effects as the high doses of the synthetic steroids. You can read up on Dr. McK Jefferies and his experience with cortisol http://www.amazon.com/Safe-Uses-Cortisol-William-Jefferies/dp/0398066213 Read the book before talking to your doctor about it and watch how funny the reaction will be: "steroids, you can't stay on steroids for any long-term", and then ask them if they are even remotely aware of McK Jefferies work. Just something to think about if prednisone is the only think that works. You could even switch to the cortisol in the meantime in order to limit the side effects until you can hopefully withdraw from steroids completely.


David

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 12/8/2008 12:55 PM (GMT -7)   
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.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. 
 
I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 12/8/2008 1:48 PM (GMT -7)   
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). 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 12/16/2008 9:50 AM (GMT -7)   
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.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. 
 
I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/16/2008 10:04 AM (GMT -7)   
Woo Hoo CrohnsDaddy so glad to hear the Cimzia is working so well for you. Hoping you continue to have good results.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 12/16/2008 11:30 AM (GMT -7)   
Great news!!!
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 20mg prednisone. Udo's Choice Probiotics (30 billion).


Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.

Tried SCD, didn't work, now avoiding gluten and dairy.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 12/17/2008 10:36 AM (GMT -7)   
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).


ZenaWP, I'm now experiencing what you did: Yesterday was day 12 since my first Cimzia injections, and I suffered a bit of a setback; two cramping sessions yesterday evening. Boy, was I discouraged after having such great results. I'm hoping it's just cause I'm getting close to the two week point, which is when I have my next two injections. The new dosing schedule for Cimzia is two shots at day zero, two shots at day 14, two shots at day 28, then two shots every 28 days later (as you mentioned... once a month). This has me a bit worried, as here I am still one day away from my next shots (which will be day 14 from my first set), and I'm having CD symptoms return. This med has only been approved since April, and I'm concerned that they still don't have the dosing schedule down to where you get the med before the symptoms return. I wonder why they changed the dosing to every 28 days from every two weeks like they did in the trial you were in?

Funny thing about the arthritis relief... I got very good arthritis relief from the Humira. Especially when it was combined with 20 mg of pred and 100 mg of azathioprine. As soon as the Humira wore off, my lower back pain came back with a vengeance, although my elbows and knee never did flare back up. My LBP has been gradually getting better with the Cimzia, although it's still not as good as it was on Humira. The dexterity in my fingers is getting back to where it was, too.

Now I'm wondering if it's going to take another six days after tomorrow's shots to get CD symptom relief again. I'm assuming so, because of your statement, "don't think I can handle two weeks of every month with it having worn off." Yeesh.

Humira really never helped so much that I could tell when i was getting close to my two week dosing point. Cimzia, on the other hand, seems like it has it's own built in alarm clock. Unfortunately, that alarm clock is my colon. cry

Anyone else out there on Cimzia having CD problems return when it's close to their next dose, or are you finding the dosing schedule to be adequate?
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. 
 
I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 12/19/2008 12:38 PM (GMT -7)   
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!
Just trying to be a "Regular Member".


Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. Down to 10 mg/day of Pred now, and will continue to taper until completely off as long as the other meds keep me off the porcelain.



I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 12/19/2008 1:22 PM (GMT -7)   
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
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 20mg prednisone. Udo's Choice Probiotics (30 billion).


Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.

Tried SCD, didn't work, now avoiding gluten and dairy.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 12/20/2008 12:36 PM (GMT -7)   
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.
Just trying to be a "Regular Member".


Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. Down to 5 mg/day of Pred now, and will continue to taper until completely off as long as the other meds keep me off the porcelain.



I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 1/7/2009 1:40 PM (GMT -7)   
Well, it's been one month and three days.

I'm down to 2.5 mg/day of prednisone. That's the good news. The bad news is that the Cimzia hasn't been able to completely replace the pred as far as CD symptoms go.

I had an appointment with my GI yesterday. I told him that the Cimzia was helping alot, but that I wasn't in remission. Given the fact that I'm on enough meds to be controlling a *bad* case of Crohns (let alone my *mild* case), he thinks something else may be amiss. So I'm going in for an upper GI scope in a week. He's going to take a biopsy to check for Celiac. Apparently, a biopsy from some portion of the upper GI tract is more accurate for diagnosing Celiac than the Celiac blood test.

Anyway, I'm going to wait until after next week's scope to go back on the prednisone roller coaster again. At least there's light at the end of the tunnel: I'm almost positive that 20 mg/day of pred, the Cimzia and the azathioprine should be enough to get back in remission. I'm just a bit disappointed that the Cimzia wasn't able to do the job by itself.
Just trying to be a "Regular Member".


Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. Down to 5 mg/day of Pred now, and will continue to taper until completely off as long as the other meds keep me off the porcelain.



I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


xraygrrl
Regular Member


Date Joined Aug 2004
Total Posts : 102
   Posted 1/7/2009 2:17 PM (GMT -7)   
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.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 2/11/2009 5:02 PM (GMT -7)   
Any update for us, CrohnsDaddy?
Dx'ed in 1999. No surgeries.

Current meds: 25mg Methotrexate. 8mg prednisone. Udo's Choice Probiotics (30 billion).

Tried SCD, didn't work, now avoiding gluten and dairy.


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 3/1/2009 2:34 PM (GMT -7)   
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?

cry
"The earth laughs in flowers"


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 3/8/2009 12:11 PM (GMT -7)   
I'm right there with ya, Becoming.

Today I can barely move, so I'm going from 5mg of Pred back up to 7.5mg. My pills are 5mg pills for now, and I can't cut the stupid things any smaller. As I taper down, the CD symptoms increase. I'm only 2 rounds into my Cimzia, so I'm trying to remain hopeful... but man. I wish it would kick in already!

You're not weird. At least not because of this bull-doody. I also have pill-fatigue. Lol. Some days the vitamins DO just sit there because I can't bare to take another frickin pill. ARG!!!!!!!

I wish I had something more hopefull to pass on, but just know you're not alone!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (loading doses 2-12-09)
Probiotics, Digestive Enzymes, and Prednisone


jackies
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/13/2011 1:48 PM (GMT -7)   
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.

amytupelo
Regular Member


Date Joined Nov 2009
Total Posts : 38
   Posted 12/22/2011 3:45 PM (GMT -7)   
i've been on cimzia for about 7 months. i started it after surgery that removed all active crohns - so i dont really have any input on that. i also hate the idea of being on this the rest of my life especially since i have no active disease. i was hpoing to get some feedback on side-effects. i've noticed a lot more with cimzia than with humira.. more hair loss, no libido, and my earring holes? have been infected for about 3 or 4 months now. i've always had problems with them but a little bacitracin usually clears it right up - but this is crazy - they just will not heal no mattter what i do. but its the complete loss of libido that is the hardest to deal with.. anyone else?
34/F
crohn's terminal ileum - 12 years
cimzia, b12 - ileocecectomy 3/22/11
allergies: remicade, imuran, 6-mp, cipro, levaquin

BostonGirl
New Member


Date Joined Mar 2010
Total Posts : 8
   Posted 2/23/2012 3:53 PM (GMT -7)   
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!
Diagnosed with CD in 2002
Currently on Cimzia
Been in remission since September 2010
Previously have been on Asacol, Prednisone, and Remicade (at different times)
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