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Crohn's Disease Forum » Treatment » Cimzia/Certolizumab » Cimzia Club Support Group


 
10-29-2010, 05:07 PM   #31
goofyrn2
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I started Cimzia and had a violent reaction to it by the third shot and then taken off. The first shot I felt tired, ached like the flu, and seem to lose concentration. Two weeks later with shot two, I was sleeping more, nauseated, join pain, Crohn's pain increased but I was still going strong to do this. Shot three went out of the ball park. I was sleeping up to 18 hours a day, confused, no concentration, nauseated, tingling in my arms. End of that for me. I hope all of you have good results. I have been on remicaide and developed serum sickness. I was on 6mp and developed liver failure. I have been on Humira (anaphlyaxsis) and now I am on methotrexate and steriods. I even did stem cells through a trial progress. My Crohn's is tough. All I can say is keep the faith. You can always come off a drug if you feel you should. I am always agreeable to a new treatment as long as the doc understands if its not right for me I'm off.
11-01-2010, 10:57 PM   #32
Stacyface
 
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Thanks P... I cannot believe what I am reading. I am so sorry...like your Crohns isn't enough to deal with everyday....? So GI's should be screening all biologic candidates before subscribing? I don't remember any discussion like this. I am guessing none of this shows up in routine bloodwork either? When do you see the ID doc? Oh my...more to think about. Well do your best to stay calm...the anxiety is not going to make things any better (easier said than done I realize). Good Luck and keep us posted.
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RJ: Age 16
Dx Dec 2009: Indeterminate Colitis/UC?
Dx June 2010: CD after surgery for abccess
Current Meds: Cimzia ; Methotrexate 25mg; Prednisone 15 mg tapering; Flagyl; Cortifoam
Previous Meds: Remicade, Humira, Cipro; Unisyn, Vancomycin, Pentasa, Canasa Suppositories
Starting: LDN; Entocort
Supplements: Vit D, Fish Oil, Flaxseed Oil, Multi Vit, Liquid Cal, Mag, Zinc,Iron, VSL#3; Folic Acid; B12; Calcium Gummies
11-01-2010, 10:59 PM   #33
Stacyface
 
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I started Cimzia and had a violent reaction to it by the third shot and then taken off. The first shot I felt tired, ached like the flu, and seem to lose concentration. Two weeks later with shot two, I was sleeping more, nauseated, join pain, Crohn's pain increased but I was still going strong to do this. Shot three went out of the ball park. I was sleeping up to 18 hours a day, confused, no concentration, nauseated, tingling in my arms. End of that for me. I hope all of you have good results. I have been on remicaide and developed serum sickness. I was on 6mp and developed liver failure. I have been on Humira (anaphlyaxsis) and now I am on methotrexate and steriods. I even did stem cells through a trial progress. My Crohn's is tough. All I can say is keep the faith. You can always come off a drug if you feel you should. I am always agreeable to a new treatment as long as the doc understands if its not right for me I'm off.
Just curious as to what kind of stem cell trial? Placenta? What was the procedure?...
11-02-2010, 09:44 AM   #34
goofyrn2
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I recieved the placental cells not bone marrow transplantation or chemo. Thanks for asking. I recieved infusions only and did it at the VA hospital. It was a government trial.Have a great Thanksgiving and a blessed Christmas. Cindy
11-02-2010, 09:54 AM   #35
goofyrn2
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Unfortunately I am of the 10% of the population that is diagnoses by colonoscopy to have both Crohn's and UC. Good grief.
11-02-2010, 10:03 AM   #36
Stacyface
 
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Actually they thought my son was in the Crohns/UC category too...when he developed an abcess they thought it was Crohns but still not 100% definitive. He might in that 10% with you!..thought it was like 2% though...hmmm...not sure
11-02-2010, 04:55 PM   #37
ErikaHouston
 
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I am joining this club as soon as all the insurance stuff is finalized. Hoping this drug works!! :-)
11-02-2010, 05:18 PM   #38
goofyrn2
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Hey Stacy. Well my GI doc said 10% but I have not actually looked at the research.
11-03-2010, 10:17 AM   #39
ThanksP
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Thanks P... I cannot believe what I am reading. I am so sorry...like your Crohns isn't enough to deal with everyday....? So GI's should be screening all biologic candidates before subscribing? I don't remember any discussion like this. I am guessing none of this shows up in routine bloodwork either? When do you see the ID doc? Oh my...more to think about. Well do your best to stay calm...the anxiety is not going to make things any better (easier said than done I realize). Good Luck and keep us posted.

Yeah, it's been difficult to be calm and not dwell on it. Well, I found out about the results on Friday and had an appt with the ID doc on Monday. It's amazing how quick things can happen when the doctors want it to. The ID doc was VERY interested in my case and has never seen it before. He was thinking out loud to himself wondering about other diseases such as Herpes, Hepatitis, CMV, etc etc in conjunction with TNF blockers. He even told me that he can't believe he hasn't seen other cases such as this regarding the biologics (or zumabs as he called them). I didn't get any answers yet and am waiting on more lab results. But he did say as of right now, I can do my injections tomorrow. But he is going to research regarding treatments while on biologics, etc. The doc kept saying over and over again, "wow, how interesting". I could almost see the wheels turning in his brain. Like I told my husband, it's always better to be an interesting case to a doc than a boring, run of the mill patient.

In doing some research online, I have found that Remicade and Humira have reactivated Toxo in some patients. Nothing for Cimzia yet, but it's a much newer drug. You'd think there would be some sort of list of questions a doctor would ask before putting a patient on a biologic. I was asked NOTHING as apparently others have experienced as well.

Going on Cimzia scared me at first. But I knew that not treating Crohn's was even worse. Now I don't know what to think. However, I hope people will read this and have a good conversation with their doctor before they use Cimzia.
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11-03-2010, 01:14 PM   #40
Stacyface
 
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Well I am sure there isn't much that will make you feel any better about being in this predicament. Thank you for enlightening us.
11-07-2010, 10:01 PM   #41
Sarac8275
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So glad to have found this forum! I've been seeking out personal experiences with Cimzia. I just finished my loading period with.. week 0, 2, and 4 have gone alright so far, and I'm about to be monthly. So far not much in the area of change, good or bad (other than feeling achy and sick most days, kinda like weak flu symptoms?). I'm also on two 1.2 gm of Lialda, which never really seemed to do much but the doc suggested I stay on it. I can't help but notice alot of people on Cimzia saying they're also on 'Humira'. A little curious about that also..
11-08-2010, 12:39 AM   #42
krbuerg
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I have been taking Cimzia for approx 7 months. I was also on 60 mg of pred. Now, I am weaning off the pred and down to 15mg. I honestly haven't felt any changes since starting Cimzia. I did have a colonoscopy last month and to my surprise, the three areas of inflammation were gone! Couldn't tell there was anything there before. I hope it was the Cimzia working and not the pred. I still have an awful lot of bleeding.Don't know what that's about, but we are working on finding out where it's coming from.

So glad we have a group!
11-09-2010, 01:05 PM   #43
ThanksP
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So glad to have found this forum! I've been seeking out personal experiences with Cimzia. I just finished my loading period with.. week 0, 2, and 4 have gone alright so far, and I'm about to be monthly. So far not much in the area of change, good or bad (other than feeling achy and sick most days, kinda like weak flu symptoms?). I'm also on two 1.2 gm of Lialda, which never really seemed to do much but the doc suggested I stay on it. I can't help but notice alot of people on Cimzia saying they're also on 'Humira'. A little curious about that also..
I've never heard of anyone taking Humira and Cimzia at the same time. In fact, I think in the warning pamphlet it says never to mix Cimzia with another TNF blocker. But I kknow a lot of people tried Humira, it failed for one reason or another, so they tried Cimzia. Perhaps that's why you keep hearing Humira and Cimzia in the same sentence. I was put on Cimzia first and have not tried either Humira or Remicade...yet.

Oh, and I get really weak, tired, and achy the day after my injections. But it seems to clear up the second day after I take it. Good luck to you, hope it works!
11-09-2010, 01:08 PM   #44
ThanksP
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I have been taking Cimzia for approx 7 months. I was also on 60 mg of pred. Now, I am weaning off the pred and down to 15mg. I honestly haven't felt any changes since starting Cimzia. I did have a colonoscopy last month and to my surprise, the three areas of inflammation were gone! Couldn't tell there was anything there before. I hope it was the Cimzia working and not the pred. I still have an awful lot of bleeding.Don't know what that's about, but we are working on finding out where it's coming from.

So glad we have a group!
That's awesome they showed no inflammation! Hopefully you can get the bleeding under control and have some relief. Good luck to you and welcome to the C-club
11-10-2010, 01:54 PM   #45
Arby
 
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I am waiting on Insurance approval for Cimzia. I've been on Humira for 3 years. 1st for Psoriasis then when that went away now for Crohns. It's done nothing for the Crohns. My new GI said why take it if it isn't helping and recommended Cimzia. I pray it helps.
11-11-2010, 01:52 PM   #46
Sarac8275
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I've never heard of anyone taking Humira and Cimzia at the same time. In fact, I think in the warning pamphlet it says never to mix Cimzia with another TNF blocker. But I kknow a lot of people tried Humira, it failed for one reason or another, so they tried Cimzia. Perhaps that's why you keep hearing Humira and Cimzia in the same sentence. I was put on Cimzia first and have not tried either Humira or Remicade...yet.

Oh, and I get really weak, tired, and achy the day after my injections. But it seems to clear up the second day after I take it. Good luck to you, hope it works!
Thanks, that clears up some things! I do get the achy feeling alot, from day to day it differs, but hopefully it'll level out when my body gets used to the medicine.
11-16-2010, 06:24 PM   #47
brenda1
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Staceyface,

I just had a follow up colonoscopy today. My Dr. wanted me to have one 1 year after starting Cimzia, it's been 11 months and I got great news! My colon is 80% healed, no scarring, it looks smooth and normal considering last year the whole thing looked like raw hamburger. Dr said it may take up to another year to really be good but I am very pleased with my Cimzia results now
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11-16-2010, 06:45 PM   #48
bangarang
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Just had my colonscopy yesterday, after almost a year of cizma didnt get to speak to my doctor afterwards but the nurse said alot of my colon was healed, thought it was my change of diet but after reading the above comment guess cizmia really does work.
11-20-2010, 10:24 PM   #49
Sarac8275
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Staceyface,

I just had a follow up colonoscopy today. My Dr. wanted me to have one 1 year after starting Cimzia, it's been 11 months and I got great news! My colon is 80% healed, no scarring, it looks smooth and normal considering last year the whole thing looked like raw hamburger. Dr said it may take up to another year to really be good but I am very pleased with my Cimzia results now
Congrats! That's amazing... Definitely gave me some hope
11-21-2010, 06:04 AM   #50
goofyrn2
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Congrats Brenda. That is such great news. Keep positive and enjoy the holidays. Cindy aka goofy
11-21-2010, 08:21 PM   #51
don1jones
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Been a bad couple of weeks for me with two stints in the hospital and two kidney stones removed. I had just made the decision with my doctor to stop the CIMZIA. It showed every appearance of a blockage. Then every thing went crazy. They had to call in a special doctor. He took me off Cipro and started a penicillin type med. Problem is--I have been told since I was six I was allergic to penicillin. I am at home but feel horrible.
11-22-2010, 07:24 AM   #52
goofyrn2
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Hey Don. Sorry to hear you are having a rough time especially nearing the holiday season. I had a friend who was told was allergic to penicillin as a child and she does fine with it now. There are so many synthetic type drugs out there now they do well. I hope you recover swiftly. I too was on Cimzia and take off due to problems with it. Right now I have asked to just left me rest for the holidays and after the first of the year re-evaluate all and see where we are. Sometimes I'm not sure all these drugs they have us try doesn't just kick up the Crohn's. Happy Holidays. Cindy
11-22-2010, 11:19 AM   #53
ThanksP
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Don, so sorry to hear of your problems. Hopefully being home and able to rest will help you out some. Hang in there!
11-24-2010, 10:25 AM   #54
ThanksP
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Here's an update to my scare with Toxoplasmosis being reactivate due to Cimzia. It seems that my active antibodies aren't too high. The ID doc did a different test than my GI that shows how active the disease is. Since it's not too bad, I can continue my injections and life is good. I'll just get tested for it every couple months to put my mind at ease. Phew. The ID doc told me I could take medication "just on case". But please, I take enough meds as it is, I don't want anymore.

Freaked out, panic mode OVER.
11-24-2010, 11:06 AM   #55
Jessica
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Here's an update to my scare with Toxoplasmosis being reactivate due to Cimzia. It seems that my active antibodies aren't too high. The ID doc did a different test than my GI that shows how active the disease is. Since it's not too bad, I can continue my injections and life is good. I'll just get tested for it every couple months to put my mind at ease. Phew. The ID doc told me I could take medication "just on case". But please, I take enough meds as it is, I don't want anymore.

Freaked out, panic mode OVER.
Yay!
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11-24-2010, 11:37 AM   #56
goofyrn2
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I am amazed at all the different responses to medications...one helps one person and the same drug causes more problems for others. We all fight to find the right combination for ourselves with reactions documented by fellow Crohn's victims to know what one may face. I thank all for putting their experiences on the board so we all benefit from them. I send prayers to all as we fight to get control and keep it. Each person here is a wealth of information and support. Blessings to all this holiday season. Eat as much as you can but enjoy those you spend time with and those you cannot. Happy Thanksgiving. Cindy AKA Goofy
11-25-2010, 01:21 AM   #57
ophia921
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I was diagnosed with Crohns back in 2007. I've been on Azathioprine pretty much the whole time (minus a few months in the beginning when I was unemployed and had no insurance) I seem to end up in the hospital every year since for 2-3 days due to inflammation that is so bad that it just about caused blockages. December 2009 - I spent Christmas eve and day in the hospital because of my Crohn's. It was at that point I just about had enough. So when I saw my gastro back in January, he wanted to have me give Remicade a try. I had infusions in February, March, and April. I was still experiencing symptoms and met with a surgeon at the end of April. She thought I would benefit greatly from the surgery. Ended up scheduling my resection on June 7th. My surgeon ended up removing 9.5 inches of small intestine (the part at the end where it connects to the large intestine) and "the largest fistula" she had ever seen. I was in the hospital for a week and off from work for another 3 weeks. For going through all the pain and frustration of being in the hospital and having surgery, I was expecting one to two years of remission. I was in remission for 2 months before I started having flares again. Gastro checked my Azathioprine levels and they were too low. So I went from 200mg to 250mg. They checked the levels again 3 weeks later, and then my Azathioprine levels were too high. So now they have me on 225mg. I'll go get tests done again in like 2 weeks (follow-up with gastro on Dec. 29th).

Oh, I forgot to mention....my gastro has also put me on Welchol (625mg..2 tablets in the AM). It has made a significant difference on the number of trips I make to the bathroom during the day. Has anybody else taken Welchol for Crohn's?

Anyways, a friend of mine who has Crohn's takes Cizmia and she has been happy with the results. I'm debating if it is even worth my time to try. What do you think?

Also, local clinical trials are finally getting ready to start here with the use of Vedolizumab for patients with moderate to severe Crohn's. I think I may request more information, as I can't keep going on like this. So far this week I've already had 3 flares. Its so frustrating!
11-30-2010, 10:11 AM   #58
ThanksP
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After having an MRE (similar to a regular MRI but have to drink Barium) I found out that the Cimzia is no longer working. We are going to try doubling the dose for two months to see if that jumpstarts some healing again. It was that or Prednisone, and I'll do anything over taking Pred again. Hope this stuff starts working again like it did previously.
12-01-2010, 04:49 PM   #59
Donna1
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Has anyone postponed their dose of Cimzia? My next does is due Saturday which means the following does is due January 1st. My insurance will not cover it unless I call it in after the 1st and it needs to be mailed to me. I was thinking of postponing this Saturdays injects for one week? Any thoughts?

Also has anyone had any issues with lumps in their legs since they have been on Cimzia? I keep getting these quarter sized painful lumps that come and go.

Thanks

Donna
12-01-2010, 08:09 PM   #60
TheyCallMeRC
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We have a club???? Hell YEAH!!! LOL

I have had 8 doses of Cimzia so far.....

My medicare approves Cimzia in 6 month increments.... The first 6 months was interrupted by surgery. I took it for 3 months then off for three then for 3 again....

I have been on it for 5 consecutive months now and I can't stay on it on it's own just yet.

I still have to take a low dose of Prednisone..... My G.I. says it can take 12 mos. or so to fully take in some patients...

How long have you people been on that it has helped?

I have tried Remicade before with no luck and he never tried Humira because he said if the Remicade didn't work then 9/10 the Humira wouldn't work either....
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