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


 
10-14-2010, 05:51 AM   #1
ThanksP
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Cimzia Club Support Group

About this Support Group

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.

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10-14-2010, 05:48 PM   #2
kayvank
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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.
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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10-14-2010, 06:24 PM   #3
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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
10-14-2010, 08:40 PM   #4
slice
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How about the Cimzies?
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Dx'd Crohn's Colitis 2008
Dx'd Ankylosing Spondylitis 2011
Cimzia (400mg every 2 weeks)
15 mg Methotrexate
Rowasa (as needed)
10-16-2010, 08:29 PM   #5
don1jones
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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.
10-16-2010, 10:26 PM   #6
Poppysocks
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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.
10-17-2010, 08:13 AM   #7
ThanksP
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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.
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.
10-17-2010, 08:19 AM   #8
ThanksP
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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.
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!
10-17-2010, 04:24 PM   #9
slice
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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.
10-17-2010, 11:39 PM   #10
Poppysocks
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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?
10-18-2010, 09:15 AM   #11
ThanksP
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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!
10-19-2010, 01:36 PM   #12
don1jones
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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.
10-19-2010, 09:15 PM   #13
slice
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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.
10-20-2010, 07:11 PM   #14
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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..
10-21-2010, 12:43 PM   #15
don1jones
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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.
10-22-2010, 09:16 AM   #16
ThanksP
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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....
10-22-2010, 11:08 AM   #17
Stacyface
 
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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?
10-23-2010, 12:54 AM   #18
don1jones
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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.
10-23-2010, 06:51 PM   #19
ThanksP
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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.

Last edited by ThanksP; 10-24-2010 at 09:58 AM.
10-24-2010, 12:09 AM   #20
DustyKat
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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.
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10-24-2010, 08:48 AM   #21
ThanksP
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But how would a medication (Cimzia) make the scarring worse? Does healing faster cause more scarring than slowly healing?

Last edited by ThanksP; 10-24-2010 at 08:50 AM.
10-24-2010, 01:59 PM   #22
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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.
10-24-2010, 03:41 PM   #23
ThanksP
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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.
10-24-2010, 07:44 PM   #24
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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.
10-27-2010, 07:12 PM   #25
Lucy
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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.
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10-27-2010, 09:15 PM   #26
jackster
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been takin cimzia for 3 months now i dont have alot of stomach pain all the other meds didnt work
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10-28-2010, 08:48 AM   #27
Donna1
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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
10-28-2010, 12:29 PM   #28
don1jones
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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.
10-29-2010, 08:29 AM   #29
ThanksP
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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.

Last edited by ThanksP; 10-30-2010 at 07:23 AM.
10-29-2010, 04:29 PM   #30
don1jones
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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.
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