Cimzia Club Support Group

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ThanksP

Joined
Mar 5, 2010
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I know there aren't a lot of us yet, but I have a feeling our numbers will grow. So I figured we could start a Cimzia Club, the newest addition to the biologics group. If you have the Remi's and Humis, what are we? The Cimzians, Cimheads, Cimis?


I've been on it since March '10 and so far, so good. No problems here for me. Cimzia has given me my life back.
 
ThanksP said:
I've been on it since March '10 and so far, so good. No problems here for me. Cimzia has given me my life back.
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I am in the process right now of a pre-test for cimzia. Doc wants to do a TB test and chest xray before i go on it. Looks like Cimzia has been working well for you, i hope it goes well for me too.

Have you had any surgery? My GI doc stated that there is a 90% chance i would have to have surgery in the future. My Crohns is very localized from what they say: it is where my small and large intestine meet. If i go under the knife, it will be in December. I will update you all.
 
I did the start up shots then we lost our insurance and I have to stop when I was due for my 4th shot... hence the crazy flare I am in right now.. I hope to have insurance soon so I can restart it..hope that is an option
 
I had my first Cimzia shots yesterday. One in the stomach and one in the thigh. So far no side effects. So far --it hasn't changed me from male to female. I haven't ever tried these type medications. But--all is well that ends well.
 
I wanted to try Cimzia but my insurance (Aetna) would only cover half of it. So I was forced to try Humira after being on Remicade for the last 6 years. Doesn't look like the Humira is working after about a month so I'd like to eventually try Cimzia if I can get my insurance to cover it.
 
don1jones said:
I had my first Cimzia shots yesterday. One in the stomach and one in the thigh. So far no side effects. So far --it hasn't changed me from male to female. I haven't ever tried these type medications. But--all is well that ends well.
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Did it hurt in the stomach? I initially wanted to do it in the stomach but the nurse who taught me, told me that it was more painful. So, I never tried. It seems like it would be easier to grab a good bit of skin on the stomach rather than the thigh. Although, somewhere along the way, I turned into a wimp anyway and now have my husband do my injections.
 
kayvank said:
I am in the process right now of a pre-test for cimzia. Doc wants to do a TB test and chest xray before i go on it. Looks like Cimzia has been working well for you, i hope it goes well for me too.

Have you had any surgery? My GI doc stated that there is a 90% chance i would have to have surgery in the future. My Crohns is very localized from what they say: it is where my small and large intestine meet. If i go under the knife, it will be in December. I will update you all.
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Nope, luckily, no surgery for me yet. Hopefully the Cimzia will work for you and you won't need surgery either. My doctor told me that he has sometimes seen Cimzia actually heal the damaged spots in the intestines to the point you couldn't tell Crohn's had been there. I don't know if that's true or if he was just trying to make me feel better. But it is hope either way!
 
ThanksP, I was taught with the stomach. One time I tried the thigh and surprisingly it hurt much worse! Having said that, some of my injections don't hurt at all and others are pretty painful and I haven't figured out what causes what. I have to say though, it's never been as painful as it was in the thigh and my thighs have some meat on them. And yes, the abdomen is a bit easier to get to.
 
To everyone who is taking Cimzia in here. Did you get your insurance company to cover all of it? Or are you paying for a good portion of it out of your pocket? If you did get your insurance to cover all of it, what kind of insurance do you have? And what previous medication did you have to try?
 
I have a $22 co-pay but other than that TriCare pays the majority of it. I didn't have to try any other biologic first. My doctor spoke with the insurance company and explained to them that this was the drug I needed. No problems.

If your insurance company doesn't cover all of it, I know that there is the CimPay program which will pay up tp $500. Have you tried that? http://cimzia.com/cimpay/#fUORTnQdrFbD Hope that helps you a little. Good luck to you!
 
Cimzia

Had my first injections last Friday. Two more coming in 2 weeks from last Friday. I have had no side effects. Nothing has fallen off -- thank goodness. Can't say as I feel different in any way.
 
Poppysocks, Cimpay paid the first year of my insurance co-pay ($100) but now I have to cover it. They've only been charging me per delivery though so since my pharmacy ships 3 mos. doses I only have to pay the $100 every 3 months, which is better than once a month. Also I work at a non-profit theater and since they had to renegotiate our insurance co-pays which doubled my co-pay they are going to reimburse me for some of that money.
 
Hello Fellow Cimzians, Cimheads, and Cimi's (I think I like that one). My son, RJ, 16, has been on Cimzia since April 5th after failing Remicade (severely allergic) and Humira. He is on other meds as well...methotrexate, prednisone, flagyl and starting entocort in the hopes of weaning the prednisone and also starting LDN! However, since this is the Cimzia club let's stick to that. We have not seen miracles from Cimzia but he has had some periods of relief. I beleive with all the immunosuppression he picks up things so easily and it starts him in another flare. I also think he is steroid dependent as we go down only to be forced to go back up again. He is on 15mg right now. It is true, Cimzia, like other biologics helps to heal the gut as well as nasty fistulas. In terms of insurance, we have Oxford ..Liberty plan...and up until July when we had to go to a self pay plan with them the Cimzia was completely covered because we applied for a Cimcard. Have you all done that? Cimzia will pay up to $500.00 (I believe...its a little foggy now) of your copay. So, it cost zippo. Now it is $250.00 month because we are paying our own insurance. Keep me posted on your progress and good luck with the payments. This is one very expensive disease..:frown:
 
Cimzia

The shot in the abdominal area did not hurt at all. Neither did the one in the thigh. I have Federal Blue Cross Blue Shield insurance. They use Medco. I pay $65 for a 3 month supply of CIMZIA. I realise just how fortunate I am. Had my first two injections a week ago and no side effects at all. Can't see that I feel any different but get 2 more injections in a week.
 
One little annoyance about the pharmacy that delivers my Cimzia...they DO NOT STOP CALLING ME! Ugh, not one week after my delivery, they start calling me EVERYDAY to remind me to set up my next delivery. And it's not even a person calling, it's an obnoxious robovoice. I have memorized this recording so sometimes I pick it up and speak along with RoboChick. I can remember the script, but I can't remember to ask them to stop every month when I do call in to set up delivery. Curascript is going to drive me insane if this disease doesn't already. OK, silly, trivial vent is over....
 
Just curious... have you all been told Cimzia will help to heal the mucosa lining? A friend of ours, who actually referred us to this forum, said that Cimzia healed him so quickly he actually had "scar tissue" from healing so rapidly. I beleive all the biologics are supposed to act in the same way but I never heard of such rapid healing. Any thoughts?
 
The nurse that gave me the injections mentioned that some patients have blockages after taking the injections. I am concerned about that as I avoid surgeries at all costs--unless life threatening. After one week of Cimzia-I am having some abdominal pains that I haven't been having. They aren't bad pains. But I am concerned about just what you just said--scarring--which can cause blockages. Will keep you posted.
 
Wow, I have never heard about the scarring and blockage associated with Cimzia. My doc did tell me that he has seen the drug heal previously inflammed areas as if the disease had never been there.

I'm a little slow so I don't quite understand how healing would cause scar tissue. Wouldn't it be from the original cause of the damage in the first place that caused the scarring? I'm not trying to be snide, really, just can't seem to wrap my wee little brain around the concept.
 
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The type of healing that occurs is generally dependent on the extent of the damage in the first place. The higher the degree of damage the greater the bodies response is to healing it and therefore the higher degree of scarring.

The healing process is essentially no different on your skin to your intestine. Extensive but superficial inflammation in your bowel is like sustaining a "gravel rash" wound on your skin. It will heal and there is no scarring. However once the damage extends beyond those superficial layers the ability to heal becomes far more complex and intense and the area becomes overloaded with the ingredients necessary to heal and it is this overload that causes excessive tissue building and hence scarring.

Dusty. :)
 
But how would a medication (Cimzia) make the scarring worse? Does healing faster cause more scarring than slowly healing?
 
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Exactly. The inflammation, and as Dusty said, the degree of the inflammation, plays a role in how it will heal. So what I took away from this is that you may heal so rapidly that the scarring can be worse.....On another note, anyone notice hair loss or thinning? I am trying to figure out what is causing it...prednisone, Cimzia, methotrexate or the combo. My son's hair is extremely oily now too....was always dry, but that I am certain is the pred. Hair loss is side effect on it all and I didn't really see his hair change until the Cimzia. He went from thick, wavy, coarse hair to thin, more straight, oily hair.
 
I noticed quite a bit of hair loss but I think it was an after effect of the Prednisone. I noticed a large amount of hair loss a month or so after stopping the Pred. However, it has since stopped falling out, THANKFULLY. I started taking Biotin at my doctors suggestion and it has DEFINITELY helped. I went to get my hair cut a few days ago and the lady was stunned at how much new hair growth I have. My stylist also suggested using Biotin shampoo after seeing great results from another client of hers. It can't hurt so I'm going to try that as well. Got both of them at GNC.
 
Thanks P...I am on it! I have heard about Biotin...very tough getting him to take one more pill but if it's for his hair maybe that will influence him a lil. :smile:
 
Hi guys. I've been reading your posts because after talking with my doctor today she said at my next appt. we would discuss switching me to the Cimzia. My Humira has reached it's peek of effectiveness is what she thinks. She told me the Cimzia is stronger than the Humira. She is starting the precert for this so we shall see. Blood work today checking CBC, B12, Thyroid, A1c. My blood sugar has gone haywire and I cannot seem to keep it from going down. Also being referred to a nutritionist to try and see how would be the best for me to eat between the blood sugar problems and the crohn's. Hopefully all this will help.
 
me a cimhead

been takin cimzia for 3 months now i dont have alot of stomach pain all the other meds didnt work
 
Hi Everyone:

I've been on Cimzia now for about 5 months. I have had some ups and downs with Cimzia but told myself to go through 6 months and not form an opinion until I give it a chance. Things did start to get a little better about a month ago and then this past week not so good. So I think Im still in the ups and downs, but Im not giving up yet. I do feel a whole lot better, the pain in my bones went away after only one week. My energy level also increased (love that part). I did have some issues with sores in my mouth, but that was after the first two injections, then that stoped. I went on Metronodizol and that caused D, so that threw me off a bit, not knowing if its the Cimzia or the Metronodizol but as soon as I stopped it went away. All in all I have to say Im glad I'm on Cimzia and Im still hoping my Crohns will continue to improve. I do get more pain in my abdomin then I did before Cimzia, that stumps me a bit. Good luck to eveyone and I hope Cimzia helps you all!!!!!!!!!

-Donna
 
I just had my second set of injections. I too don't want to form an opinion for a little more time. Can't see any real improvements the first two weeks. And where they sewed my intestines back together many years ago has hurt a lot more. Blood pressure has risen in the last week. Just have to keep the faith that things will get better.
 
Got some really bad news today. Last week, after reading something in the Humira thread, I was tested for Toxoplasmosis antibodies. I had Toxo as a young child, but never thought anything of it ever since until I read that topic. The doctor's assistant called this morning to tell me that I had highly elevated antibodies and that I need to see an Infectious Disease doc ASAP. She said that I may have to stop Cimzia and if so, I would not be able to use any of the other Biologics either. I'm in absolute shock right now. I'm also mad, VERY mad at my GI doc for not asking any questions, etc before putting me on Cimzia. I'm freaking out because I have a friggin' parasite eating at my brain and now I'm might have to stop the only treatment that has worked for me. Ugh, I should stop freaking out until I see the ID doc, but damn, this sucks.

Sorry,I had to vent somewhere. Plus, I want to get this out there so it'll give everyone else something to think about before taking this med, or any other Biologic.

ugh.
 
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ThanksP--that does suck. My doctor did no blood tests and didn't have the test for TB done. Medco pharmacist is the one that told me I needed a TB test. Hope you get some good news as it sounds like you could use some. This Cizmia scares me and I don't scare easily. Your story is a good example of why it should be feared. Good luck and wish you the very best.
 
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.
 
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? :mad2: 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.
 
goofyrn2 said:
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.
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Just curious as to what kind of stem cell trial? Placenta? What was the procedure?...
 
Stem cells

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:thumleft:
 
Ibd

Unfortunately I am of the 10% of the population that is diagnoses by colonoscopy to have both Crohn's and UC. Good grief.
 
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
 
Stacyface said:
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? :mad2: 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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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.
 
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.:hang:
 
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..
 
Fellow Cim :)

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!
 
Sarac8275 said:
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..
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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!
 
krbuerg said:
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!
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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
 
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.
 
ThanksP said:
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!
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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.
 
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 :)
 
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.
 
brenda1 said:
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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Congrats! That's amazing... Definitely gave me some hope :)
 
Cimzia

Congrats Brenda. That is such great news. Keep positive and enjoy the holidays. Cindy aka goofy:thumright:
 
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.
 
Hard time

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:hang: 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
 
Don, so sorry to hear of your problems. Hopefully being home and able to rest will help you out some. Hang in there!
 
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.
 
ThanksP said:
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.
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Yay! :thumleft:
 
Cimzia

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:hug:
 
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!
 
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.
 
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
 
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....
 
Donna1 said:
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
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I have done mine a few days early and a few days later. I never noticed any difference. The pharmacy that delivers mine can do it for the next day delivery if I call early enough. Can you call them and set up a January 2nd delivery so you wouldn't have to delay your shot very long?
 
Cimzia

Hi Donna. I was unable to take Cimzia but I am on Methotrexate and Embrel. I have had to postpone them for whatever reasons and it did not have a negative effect on me. I think you will be fine. Hugs and good luck. Cindy
 
Thanks for the info, I think I'll try it and see what happens. Unfortuantly I need to wait until January 1st for the insurace to pay for it so they will not even process the order until then and since its a holiday I will have to wait until the Monday January 3rd with the earliest delivery of Thursday the 6th. If I postpnone this Saturdays until next week then I will be due on January 8th so I will be covered. I was afraid I might flare if I postpone so that is why I wanted to do it now when I have the shots to give incase I start flaring. I guess I'll be the guinne pig and test it out and let you all know how I do:dog:
 
Donna I know with Embrel and Methotrexate I had to have a TB test done. You may want to check on that before you start the insurance process. It should be on the web site. I would hate for you to have more delays because of that test. Cimzia gave me too many side effects so I had to stop it though other folks have done well with it. Good luck and happy holidays. Cindy aka goofy
 
ThanksP said:
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.
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Hi Thanks P:
My son started Cimzia in early April this year after Remicade and Humira failed. As I have said before, I can't say he has seen great relief. However, in June, after an abcess he flared so badly that our GI doc did a reintroduction of Cimzia...it seemed to help for a short period but now he is getting it closer to every 3 weeks and moving up and down on Prednisone which he is definitely dependent on at this point. Add 25mg of Methotrexate and it's a lot of med's. So, it is certainly worth a try if it will keep you off the Prednisone. We are currently at our wits end. About to try completely elemental through NG tube. If that doesn't help we discussed a gastric tube for feedings...Anyone ever try this route? My doc said it takes a good five months for Cimzia to kick in... someone also mentioned their doc said 12 months?..How long have you been on it? FYI.. We also scheduled an appointment at Northwestern with Dr. Burt and his HSCT team...
 
Donna1 said:
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
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My son starts flaring worse around the three week mark...I get the feeling he is in a category of his own though...Has not had more than a three week period of relief or being "more comfortable" would be a better term than remission in over a year. If your doing well on it in general, seems like it would be okay..
 
just wanted to update on my one week delay...I have to say I thought I would not see any difference, its just one week ...well I was wrong, I cant wait to get my shots tomorrow. This week was very tough. I have this cramping pain under my left lower ribs. I also feel like I'm getting sick, I have not even had a slight cold since I was on Cimzia now I feel like my body is back to fighting itself. I do not think Cimzia is putting me in remission but it definatly is helping with the inflamation and the exhaustion. I have more energy since I have been on Cimzia then I have in a very long time. Though this last week I feel the energy draining away..... one more day and hopfully I jump right back to feeling better!
 
Donna1 said:
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
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Call your doctor ASAP. Could be nothing, but many blood clots start as painful/tender lumps in the legs before traveling to the heart and lungs. I don't mean to scare you, it may very well be nothing.... but any changes warrant a call to the doc. Catching them early on in the legs make them much easier to treat. My sister ignored hers and ended up quite sick with pulmonary embolism.
Also- ask your doctor about postponing. I wait if I have an active infection (just like on the Humira), but the bilogics are more immunomodulators and work best at consistent levels. :goodluck:
 
Hi I've been on cimzia since august remicade didn't work so well humira...i got tired of taking it every two weeks and got lazy and didn't take it(fooled my doc all cbcs and blood tests were good) i asked to be switched because it's once a month and its in a syringe(i'm a nursing student and thought well why not learn how to give shots now) i got shingles about two months after and doc told me to stop taking it until the rash goes away i still have a spot and still itch(it's been since late oct) and i have scaring around my belly button so im still afraid to take it since i still have a spot and still itch i might take it this weekend but im wondering if it ever burns when you inject yourself? because the two times i have taken it it burned so badly i couldn't do the full two injection and the second time i had the nurse at the wellness center at my college inject it for me and it still stung she even had me ice it and set it out for 30 min should it be set out longer? ive been hearing it should be set out for up to 1 1/2 hours for it not to sting as bad what do you guys do for prep? I can't do my tummy since when i had shingles it was on my tummy i always did the humira in my arm but since i can't do cimzia in my arm i need some help since i stopped the cimzia ive been constipate (2 months) i've tried everything high fiber, laxitives, softeners im starting to worry that something else is going on althoug i haven't had a flare in almost three years should i call my doc or give cimzia a try again and see what it does? sorry for asking so many questions im just a little worried
 
Hi Bry33. If you had shingles in Oct you should be really safe to go on with your treatment but if your doc says no then you need to follow his instruction. I do the embrel twice a week, but in the small self inject dose units. The large pen you were using, yes is painful, no matter how long you leave it out. I tried Cimzia but personally I had no luck. I had a reaction to it but I have seen where it has helped others. It's what works for you. As for constipation, I have heard over and over Miralax is the ticket. Now if you think something else is going on you need to sit down and have a heart to heart with your doc and not ignore what your instincts may be telling you what could be a problem. You will not be able to rest until you have an answer that satifies you. I hope this helps. Cindy
 
lol thank you cindy im probbly going to call my doc monday and see if there is anything i can do about it ive been taking the benefiber chewable my psychologist said i need a high fiber diet..but im a little iffy on it but i think its ok i haven't had an actual flare up in years i might try miralax if the benefiber isn't working and the cimzia doesn't do any good i'll try the miralax thank you!
 
bry you are very welcome. I have heard from some of my friends who do not have irritable bowel disease that the chewable benefiber makes them worse. I personally am not on a high fiber diet because I have the opposite problem. I can't hold my bowels so I am a depends queen. It doesn't bother me. I have learn to accept "it is what it is" and I have to be prepared. So if the benefiber isn't working I'm not sure I would fool with it anymore. I hope you find a drug that works for you. Poor pun but having IBD of any form is a crap shoot. Happy Holidays and a Blessed New Year.
 
lol thank you goofy no ibd in any form isn't fun i used to have the opposite too but it wasn't that bad and only when i first woke up but i was so busy with school and everything i started to not notice what was wrong but i learned my lesson and thank you for the benefiber advice idk i just went to a clinic today and although they couldn't do much without my docs approval they thought that i am in a flare they took my cbc and sed rate and gave me some sterroids and an antibacterial in case there is some bacteria but told me to call my doc and i called them of course its the weekend and my doc isn't available so i get the one thats on call and i can't understand most of what she was saying so i had to ask her to repeat herself but she said that she will give the info to my doc and in the meantime try magnesium citrate...ugh tried it and the damn stuff made me throw up then diluted it in some soup but poured too much in and then tried a little in ramen so im crossing my fingers
 
Hi bry33 - when I inject my Cimzia it stings really bad. Its not as bad in the abdomin as in the legs. I have my husband do the injects since there is no way I could do it myself. I feel bad for him as Im constanly saying is it almost done as he is injecting it. I do notice that if we inject toward the inner side of my thigh its not as bad. and remember to let go of your pinch as you are injecting.
 
susanfrances said:
Call your doctor ASAP. Could be nothing, but many blood clots start as painful/tender lumps in the legs before traveling to the heart and lungs. I don't mean to scare you, it may very well be nothing.... but any changes warrant a call to the doc. Catching them early on in the legs make them much easier to treat. My sister ignored hers and ended up quite sick with pulmonary embolism.
Also- ask your doctor about postponing. I wait if I have an active infection (just like on the Humira), but the bilogics are more immunomodulators and work best at consistent levels. :goodluck:
Click to expand...

I saw my primary care doctor yesterday and I asked her about these bumps on my legs, she said they are called Erythema Nodusum. I didn't find too much info on them except they are painfull red bumps on your lower legs that go away after weeks. She did say to watch out for what I read online but I did not find anything bad, hmm. I will tell by GI when I see him and see what he says. I hope they do not tell me to go off Cimzia.
 
Donna1 said:
Hi bry33 - when I inject my Cimzia it stings really bad. Its not as bad in the abdomin as in the legs. I have my husband do the injects since there is no way I could do it myself. I feel bad for him as Im constanly saying is it almost done as he is injecting it. I do notice that if we inject toward the inner side of my thigh its not as bad. and remember to let go of your pinch as you are injecting.
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Thank you i wanted to have my boyfriend do it but he really can't do anything that he knows will hurt me but i did pinch it the whole time and it kind of took the sting away for me
oh on another note i got my blood tests back and i still have no signs of inflamation hmmm idk what it could be i called my gi doc and he said that since there is no inflamation or anything wrong with the tests its not crohn's related and he put me on miralax...the first day i had to take five caps of it all within two hours apart and dissolved in either water juice or pop...lol a lot to drink but nothing happened the first day today it was better
 
Cimzia Risks and Benifits

After my Crohn's diagnoses in September I was put on Entocort and Prednisone. These drugs made me feel much better. Although, I have not been able to taper off the Prednisone very well. My doctor has suggested I look at Cimzia as an option.

I have read that it (Cimzia) increases the risk of certain cancers and bad infections. Does anyone have any experience with this? Are the probability of these risks menial? I have not been able to find any information quanitifying these risks.

If anyone has done any research on this and can share (particularly on the cancer risk) I would much appreciate it.

Thanks!

Spencer
 
I'm still unsure about Cimzia. I started in Sept., and just had my December shot the other day. I seem to be getting worse. More trips to the restroom and more pain. And I believe it's caused some viral infection that I thought were hemorrhoids for the longest til I saw a colon-rectal surgeon the other day..
 
bikebiddlah said:
After my Crohn's diagnoses in September I was put on Entocort and Prednisone. These drugs made me feel much better. Although, I have not been able to taper off the Prednisone very well. My doctor has suggested I look at Cimzia as an option.

I have read that it (Cimzia) increases the risk of certain cancers and bad infections. Does anyone have any experience with this? Are the probability of these risks menial? I have not been able to find any information quanitifying these risks.

If anyone has done any research on this and can share (particularly on the cancer risk) I would much appreciate it.

Thanks!

Spencer
Click to expand...

In my opinion, the risks are better than living in pain 24/7. but having read up as much as possible, it seems that the hightest risk (which is still small) is for adolescents who are taking it for arthritis. I was worried at first but there was no way I could live the way I had been living without it. You have to remember they put those warnings as a CYA for the companies. If one person grows a purple horn out of their forehead, they'll list it in the effects so as not to get sued. It may help to read up on Remicade and Humira. They are similar drugs therefore the side effects are sometimes similar. Cimzia is newer so it's harder to find a lot online. To me, the benefits farrrrrrrrrrrr outweigh the risks a hundredfold. Best of luck to you and hope you find a good solution to get some relief.
 
bikebiddlah said:
After my Crohn's diagnoses in September I was put on Entocort and Prednisone. These drugs made me feel much better. Although, I have not been able to taper off the Prednisone very well. My doctor has suggested I look at Cimzia as an option.

I have read that it (Cimzia) increases the risk of certain cancers and bad infections. Does anyone have any experience with this? Are the probability of these risks menial? I have not been able to find any information quanitifying these risks.

If anyone has done any research on this and can share (particularly on the cancer risk) I would much appreciate it.

Thanks!

Spencer
Click to expand...

The risk is very small but when i first started with humira the docs thought i had lymphoma and my scan showed all my lymph nodes swollen and they kept an eye on it but nothing ever came up from it it was just a margin of error you do get sick a little bit more but its not that bad just do the usual wash hands and clean your area before using at an office place or something else ummm i haven't had any complaints from it just make sure to leave it out for at least an hour otherwise it will hurt very badly...like my first experience
 
As soon as I get the C Diff cleared up, I will be on a 6 month Cimzia study. I have taken Remicade, Humira, and Ustekinumab.
 
No. Ustekinumab is aka Stelara. It is currently used as an fda-approved psoriasis med.

It is a randomized, double-blind, placebo controlled, parallel-group study to evaluate the efficacy and safety of Ustekinumab therapy in subjects with moderately to severely active crohn's disease previously treated with tnf antagonist therapy.

I got that off the consent and information packet, haha.

Anyway, it seemed to control serious flares. I was taking cipro/metronidazole -1000mg of each a day- so that may have helped. I had some issues with the antibiotics. I had several minor issues with blood loss in the beginning but was doing iv iron at the time, so no biggie. I did have blood loss after each colonoscopy and toward the end of the study. Not sure from what or where...

Towards the end of the study, which was 11 months long, I was losing a lot of blood. Found out it is c diff, so on another antibiotic to clear it up.

I had three infusions, three colonoscopies (which were filmed) where 18 biopsies were taken each time (can we say blood loss), and three stool tests. I had to keep track each day how many times i went to the bathroom, what the poo was like (diarrhea or solid, blah, blah) and what meds i was taking and whether there had been any change. I would meet with the research coordinator and she would take a lot of blood. She also collected the diary cards and went over my health and bathroom habits in detail. She was a very cool lady! All the meds and appts and colonoscopies and stool tests and blood draws and parking were free! There was no pay for the study, however.

I did a prometheus test during the study and got $100 :)

By the end of the study though, I was over it, haha! 11 months is a looooong time! Most disconcertingly, I will probably start a 6 month cimzia study after the c diff clears up. Hopping back on the merry go round:)
 
Last edited:
Nytefyre said:
No. Ustekinumab is aka Stelara. It is currently used as an fda-approved psoriasis med.

It is a randomized, double-blind, placebo controlled, parallel-group study to evaluate the efficacy and safety of Ustekinumab therapy in subjects with moderately to severely active crohn's disease previously treated with tnf antagonist therapy.

I got that off the consent and information packet, haha.

Anyway, it seemed to control serious flares. I was taking cipro/metronidazole -500mg of each a day- so that may have helped. I had some issues with the antibiotics. I had several minor issues with blood loss in the beginning but was doing iv iron at the time, so no biggie. I did have blood loss after each colonoscopy and toward the end of the study. Not sure from what or where...

Towards the end of the study, which was 11 months long, I was losing a lot of blood. Found out it is c diff, so on another antibiotic to clear it up.

I had three infusions, three colonoscopies (which were filmed) where 18 biopsies were taken each time (can we say blood loss), and three stool tests. I had to keep track each day how many times i went to the bathroom, what the poo was like (diarrhea or solid, blah, blah) and what meds i was taking and whether there had been any change. I would meet with the research coordinator and she would take a lot of blood. She also collected the diary cards and went over my health and bathroom habits in detail. She was a very cool lady! All the meds and appts and colonoscopies and stool tests and blood draws and parking were free! There was no pay for the study, however.

I did a prometheus test during the study and got $100 :)

By the end of the study though, I was over it, haha! 11 months is a looooong time! Most disconcertingly, I will probably start a 6 month cimzia study after the c diff clears up. Hopping back on the merry go round:)
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Interesting. But yeah, that sounds like a huge pain to go through. Funny, I saw a commercial for Stelara an hour or so after I asked you about this. Hope the Cimzia works well for you!
 
About two weeks ago I finished the third loading dose of Cimzia. I thought that the side effects were much less than that of Humira, which I couldn't tolerate. I caught a cold that really wiped me out. Turns out my white cell count had dropped to 2.5. It taught me to stay on top of my lab work.
 
I should add that we didn't follow the week 0, 2, 4 schedule. Mine were a little closer together- may have had something to do w/ the low counts.
 
maxibear said:
is cimzia better then humira?
Click to expand...

I don't know if one is better than the other. Everyone seems to react differently to meds. But I prefer Cimzia because it's a once a month dose (2 injections once a month). I don't find the injections painful at all, although they do take awhile since it's more of a gel than a liquid.

I am on double dosage right now because it seemed to have lost it's effectiveness on me. Thankfully I haven't noticed any ill effects doing 400mgs every two weeks as opposed to the 400 once a month. I'm just hoping it works for me or I'm done with Cimzia.
 
thanx for the info, glad your doing ok, i read that all these meds lose there efficacy after a certain period. my gi gave me 3 choices, cimzia, humira or 6 mp and i really dont know which one to take. i feel ok on pentassa, but its really not a great drug for someone who gets obstructions. have had 2, so i have to decide. lucky me, ty again
 
ThanksP said:
I don't know if one is better than the other. Everyone seems to react differently to meds. But I prefer Cimzia because it's a once a month dose (2 injections once a month). I don't find the injections painful at all, although they do take awhile since it's more of a gel than a liquid.

I am on double dosage right now because it seemed to have lost it's effectiveness on me. Thankfully I haven't noticed any ill effects doing 400mgs every two weeks as opposed to the 400 once a month. I'm just hoping it works for me or I'm done with Cimzia.
Click to expand...

Tell ya what, I'm about to be done with it myself. Colonoscopy less than a week ago, and they found ulcers. My GI said he might up my dose of Cimzia, or do another loading period, or whatnot, but I'm thinking it'll probably be pointless.
 
I suppose I'll be joining this club. I got the TB and hepatitis panel done this week that were required before I could start. I'm just waiting on the med.
 
so I just did my 3rd set of 2 shots at the 2 week intervals. Now I am supposed to wait 4 weeks and do it again? I do not have insurance and I am able to get the meds for free for a year.. total blessing. Questions:
Have been so tired that I go to bed at 7:30 and wake up at 7am. No energy at all. It seems that most of you have an increase in energy while on this.. and I am feeling so wiped out. Anyone else feel this way?
I have went from 20 times a day race to the bathroom to about 5 so its helping but I thought I would feel better and I seem to be slowing back down to how I feel when I am flaring super bad.. I'm not as bad as I was when I went in the hospital for a week in November.. but still so weak. But hey I "look great" ( I kinda wish that I looked sick so people would know that I am not feeling well) instead of me having to explain that I am wiped out and not really feeling well. And being skinny is NOT everything..
 
I think it is quite normal to feel tired. My son is always wiped for a few days after the Cimzia...runny nose too. Have you had bloodwork lately? Where is your hemoglobin at? Hang in there...:smile:
 
Stacyface said:
I think it is quite normal to feel tired. My son is always wiped for a few days after the Cimzia...runny nose too. Have you had bloodwork lately? Where is your hemoglobin at? Hang in there...:smile:
Click to expand...

I do not have insurance so I am not getting regular labs.. not since I was in the hospital the week before thanksgiving.. I am guessing my red count is low.. YUCK.. hope we get insurance soon..
 
So, I don't mean to go off topic but is anyone else experiencing some hair loss? I started to notice it more and more the last few days, and told my boyfriend about it-- he commented that maybe it was due to medicine I was taking. I looked online and sure enough, hair loss is a possible side effect of Cimzia. I'm starting to worry! Anyone else have a similar experience?
 
The Cimzia may well be the culprit. My son's hair changed from thick, wavy and coarse... to thin, straight and oily. Oily hair is the result of the prednisone for sure. I don't recall what other meds you are on. Prednisone and methotrexate can contribute. Thanks P suggested Biotin shampoo and biotin supplement and it has really, really helped. Give it a try:thumright:
 
Stacyface said:
The Cimzia may well be the culprit. My son's hair changed from thick, wavy and coarse... to thin, straight and oily. Oily hair is the result of the prednisone for sure. I don't recall what other meds you are on. Prednisone and methotrexate can contribute. Thanks P suggested Biotin shampoo and biotin supplement and it has really, really helped. Give it a try:thumright:
Click to expand...

I'm so glad it is helping! It's bad enough all we have to go through and then add hair loss on top of it is just horrible.

Regarding the hair loss question, I don't think it was the Cimzia that caused the hair loss for me, I think it was an after effect of Prednisone. Either way, try the Biotin supplement, it truly worked for me and not a minute too soon!
 
Thanks for the advice :) I am only on Cimzia at the moment, but I take Ultracet/Tramadol as needed. I will definitely give the Biotin a try! Recommend any certain brand?
 

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