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12-02-2010, 10:25 AM   #61
ThanksP
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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
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?
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12-02-2010, 10:30 AM   #62
goofyrn2
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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
12-02-2010, 06:19 PM   #63
Donna1
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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
12-03-2010, 05:32 AM   #64
goofyrn2
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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
12-03-2010, 06:50 AM   #65
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Thanks P....Happy to hear your positive news! Congrats!
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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

Last edited by Stacyface; 12-03-2010 at 06:53 AM. Reason: forgot to send it to Thanks P
12-03-2010, 07:11 AM   #66
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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.
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...
12-03-2010, 07:17 AM   #67
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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
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..
12-10-2010, 02:40 PM   #68
Donna1
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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!
12-10-2010, 11:14 PM   #69
susanfrances
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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
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.
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Diagnosed in 2007/ Crohn's (ileocolitis) Fistulatomy with seton placement 2007, 2008
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Pentasa/Entocort: no luck
Humira: allergic
Cimzia: started 12/10..fingers crossed

Also, sweet, precious 9 year old daughter with hx of weight loss, diarreah, abdominal pain and cramping, CD- terminal ileum- 11/10- trying every possible homeopathic route first
12-18-2010, 01:50 AM   #70
bry33
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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
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i've tried, pentasa, flagil, 6-mp, remicade, asacol, ennemas, prednizone, humira, daily mineral oils, liquid diets and many others that i can't remember
I've been on Cimzia since August 400mg
Lamotragine getting up to 200mg
ambien 10mg
12-18-2010, 08:36 AM   #71
goofyrn2
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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
12-18-2010, 09:50 AM   #72
bry33
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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!
12-18-2010, 12:38 PM   #73
goofyrn2
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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.
12-20-2010, 01:26 AM   #74
bry33
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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
12-22-2010, 04:36 PM   #75
Donna1
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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.
12-22-2010, 04:38 PM   #76
Donna1
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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.
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.
12-23-2010, 12:04 AM   #77
bry33
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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.
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
12-23-2010, 12:06 PM   #78
bikebiddlah
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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
12-23-2010, 12:32 PM   #79
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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..
12-23-2010, 11:38 PM   #80
ThanksP
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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
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.
12-24-2010, 01:00 AM   #81
bry33
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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
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
12-31-2010, 03:14 PM   #82
Nytefyre
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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.
01-07-2011, 03:50 PM   #83
bry33
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could someone please sticky this so it doesn't get lost
01-07-2011, 05:12 PM   #84
ThanksP
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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.
Is Ustekinumab known as "Tysbari"? What was your experience with it?
01-07-2011, 09:09 PM   #85
Nytefyre
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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 by Nytefyre; 01-08-2011 at 11:46 AM.
01-08-2011, 09:40 AM   #86
ThanksP
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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
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!
01-08-2011, 09:58 AM   #87
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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.
01-08-2011, 10:00 AM   #88
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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.
01-08-2011, 10:09 AM   #89
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is cimzia better then humira?
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01-08-2011, 10:45 AM   #90
ThanksP
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is cimzia better then humira?
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.
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