Newbie needing cimzia?

[alicia]

Hey there fellow Crohnie"s? I am 32 and have been dealing with this crap(no pun intentented!) for 9 yrs now. I have tried literally all the meds and had a bowel obstruction then a few months later had a bowel resection (they rhemoved 2 ft). It as made me unable to work due to the at least 10-15 urgent bathroom trips. With severe nausea and stomach cramping. And am tired all of the time! I have a wonderful GI doc whom I trust. Just spent a3 days in hospital with a flare up back on entocort. Cant do prednisone cuz it makes me manic...unless its absoluteley necessary. So doc wants to start me on CIMZIA INJECTIONS. After readeing some reviews im pretty nervous . Any advice?/?? Thank you in advance

 

[Astra]

Hi Alicia
and welcome

sorry you've had a bad time, especially with meds. I have an appt today with gastro and I'm going to ask about Cimzia too, I have done a lot of research on it, and Humira, and I am looking forward to the prospect of starting on a biologic, I don't want to be on Pred ever again!
have a read thro the threads on Remi club, and humira club and see how everyone has nothing but praise for them!
good luck, glad you found us, here to support you
lotsa luv
Joan xxx

 

[My Butt Hurts]

Hi Alicia! Glad you found us!
I have been on Humira, and I am now on Remicade (they are similar to Cimzia). They both have worked amazingly well, and I have my life back right now.
Tell us exactly what you are nervous about, and I'm sure we could calm your fears.
Welcome to the forum!
MBH

 

[Crohn's 35]

Hi Alicia..Welcome:bigwave: We dont have Cimzia here but I have heard it does help a lot of people. All meds not without risks, including nexium. The biologics are the way to go, and more convienent. The best thing to do is educate yourself so you know which way to go. NOT all meds affect us all in the same way.

Being without pain and symptoms...it is worth it.

 

[alexandros8]

I agree with educating yourself on the risks v. benefits. I had to do the same about a year ago and came to the conclusion that biologics were necessary. I wasn't happy about it, but its the best option out there right now for aggressive CD.

I took Cimzia for about 7 months. While my condition was past the point of being able to be helped by meds, I can say that Cimzia dramatically helped my energy levels. I had a strange situation where I didn't have much pain yet my CD was very active, so I needed to get to surgery... so I can't attest to its ability to reduce pain.

As far as taking it goes, its really simple and relatively painless. I'm not a needle person and was able to cope just fine doing it myself.

Good luck!

Alex

 

[alicia]

Thank you everyone for the warm welcome and replies! I guess a major concern is that it said that you CAN NOT come in contact with anyone who is sick w/the common cold/flu or anything because it could be life threatning.! Thats a concern for me because I have a 14 yr old daughter who is very active in band , church, dance, etc.. So I am around a lot of people all of the time/ Also I am hoping if I take it and it works...... i could get my life back))) Then I could go back to work and finish school.

 

[Astra]

Hi Alicia

That is one of my major concerns too!
I work with kids with ASD, not the most hygienic of little people, but I'm prepared to take the risk, and I will be embarking on the journey called Humira soon!
go for it, and good luck!
xxx

 

[Lisa]

I've been on remicade for about 5 years - have a 5 year old daughter at home.....she and my husband seem to get sick more than I do!.....although everyone is different.......I don't do anything too special, just try not to get too close to someone who is sick.....

 

[ThanksP]

I've been on Cimzia for only two weeks now but so far it's been great. When I talked to my doc about going on it, my first concern was lowered immune system, risk of infection, etc. I love to travel and am planning on going to India later this year. My doc reassured me that there is no reason I can't travel, etc. Although it is important to remember NEVER get a live vaccine. I've read all the literature I can on the drug, both good and bad, and I feel quite comfortable taking it.

It seems that the benefits of the biologics (Cimzia, Humira, Remicade) far outweigh the negatives. I'm just happy that I am able to enjoy life as much as possible and the Cimzia is helping me to do that.

Hope you find that it works for you and you too can get your life back!

 

[alicia]

Once again thank you everyone to your quick response. Seeing that I had to schedule my TB test todat(yay). Someone gave me the book called "The Makers Diet" by Jordan S. Rubin..gonna try to read it before my test on Tues so I can talk to my GI see if he thinks icould go 40 more days only being on the Entocort.(lets pray) The Professor who wrote it develloped Crohns in collegge. Made it his goal to fin the right diet to "cure" his disease and other issues. It says ... The 40 day health experience that will change your life forever! Hey i'm very open minded and beleive we should all keep ourselves informed of this disease and treatments of all kinds! Love and blessings to all. Hope you all have a crap free night)LMAO i know im a dork

 

[alexandros8]

Another tip- get a couple bottles of hand sanitizer and keep them around in different places (car, family room, kitchen)... It will help you stay away from more common bugs. From what I remember the biggest thing they want to watch out for on Cimzia is getting an infection. So if you've got any open cuts or anything make sure to keep care of them!

 

[acg101]

dont be afraid to try cimzia

Hi Alicia,
I have been on Remicade for 3 years, out of which one year was great in terms of pain reduction but I developed an alergy after 3 years and I have been on Cimzia, double dose since Nov 2009 and it took my pain level from 7-8 24/7 to 2-3 few times a week. I also changed my diet to a glutten free food.
Dont be afraid from the Cimzia. I get the same side reaction from steroids so my only other option is surgery which I am trying to avoid.

diagnosed UC/CD 1995
meds:
imuran 100
vitamin c
vitamin b12
folic acid

 

[pcbgirl227]

Hi Alicia! Wow, I thought I was reading about myself for a minute. Your story is so close to mine, it is unreal!! I too had a resection, and am now at 10-15 bathroom trips daily, and now been told I have to go on Cimzia. I am worried about infections as well since I have an 8 yr old wih her friends around all the time and I work in a call center with about 700 co-workers. Lots of infections going on between the two. I told my husband I guess I would need to start wearing a mask to avoid being sick. Just kidding, but certainly makes you feel that way! Anyway, good luck and keep us informed on how you do!!

Candace

 

[acg101]

Hi Candace, I would not worry about infections. Take normal precautions and you should be fine. If one reads all the possible side effects for all the meds we are on, ….

Currently MX :
Cimzia 400mg every two weeks
Imuran 100mg
Vitamin C, vitamin b12
Folic acid
Gluten free diet

 

[brenda1]

Hello Everyone,

I have been on Cimzia since Jan 2010 and I love it! I have 2 daughters who are involved and alot of sports and music events and everyone in the house has been sick except me! My husband evenhad pneumonia and i never even got a cold. I also got a total hip replacement in April and never got an infection or an illness. We scheduled my surgery for 2 weeks after my shots and everything worked out perfectly. The cimzia helps me so much, no pain, only pooping maybe 2 times a day, more energy and I feel almost normal again. The only thing for me is it doesn't quite last the full 4 weeks. About 5 days before my shot is due my body starts hurting again from the arthritis and I have to use the bathroom more. But it is fast acting for me, the day I have my shots I start feeling better within 4 hours usually. I would recomend cimzia whole heartedly. It has given me my life back and my story proves that getting sick and infections doesn't happen to everyone!!! Good luck with your decisions.

 

[belle1999]

Alicia, I started out on Cimzia and was nervous too. But since my CD was so aggressive, the doctor wanted to get just as aggressive from the get-go. I was probably most nervous about actually giving myself the injections. It is pretty thick and looked like it even took the nurses awhile to feel comfortable giving it.
I work with infants and toddlers. I wash my hands constantly and try to let my assistant handle the children who are more sneezy (lol!). I also carry hand sanitizer in my purse to help clean my hands when out in public.
Good luck on the Cimzia! I hope it does great things for you!

 

[slice]

Alicia (& Astra),
I had many of the same concerns when I started Cimzia but I have been on it a year (also work with kids) and have had no problems with infections or any other side effects. In March I went up to 400 mg every two weeks because it was losing impact and again, I was worried that the higher dose might be a problem. But actually, steroids are much harder on your immune system than biologics because they are more targeted to just attached (and block) to tnf inflammatory cells which are overreacting. Too much inflammation in the body (and I get it everywhere) is about the worst possible thing for your health. If this is your issue and the drug works for you, you will not believe the increase in energy when you aren't having to fight systemic inflammation. Good luck to both of you and keep us posted!

 

[Mike]

I was on Cimzia for 5 months and it did not do to much for me. I also went through hell to try and make sure I got it everymonth by leaving multiple voice messages to get called back. I now avoid the CVS specialty pharamacy like the plague.

 

[Crohn's 35]

Hello Everyone,

I have been on Cimzia since Jan 2010 and I love it! I have 2 daughters who are involved and alot of sports and music events and everyone in the house has been sick except me! My husband evenhad pneumonia and i never even got a cold. I also got a total hip replacement in April and never got an infection or an illness. We scheduled my surgery for 2 weeks after my shots and everything worked out perfectly. The cimzia helps me so much, no pain, only pooping maybe 2 times a day, more energy and I feel almost normal again. The only thing for me is it doesn't quite last the full 4 weeks. About 5 days before my shot is due my body starts hurting again from the arthritis and I have to use the bathroom more. But it is fast acting for me, the day I have my shots I start feeling better within 4 hours usually. I would recomend cimzia whole heartedly. It has given me my life back and my story proves that getting sick and infections doesn't happen to everyone!!! Good luck with your decisions.

Hi Brenda, welcome to the forum. You should tell us your full story on your own thread of YOUR STORY, that way everyone can greet you and wish you well, and joining us too. I am so glad Cimzia is working for you! Too bad Canada hasn't gotten it here yet :yfrown:. They have some trials but I also been on Remicade (allergic) and Humira (peter'd out on me, didnt work) so they dont think I would be a good candidate for it. Glad you found us!

 

[DDCleveland]

I've had Crohn's for 37 years. I was on Imuran for about 8 years until it stopped working and about 2 years ago went on Cimzia. I was also concerned since I am a school bus driver so I am around kids all the time. Have not had any problems with getting sick and Cimzia has done an excellent job keeping me in remission. From my personal experience from all these years is I have had to manage my disease. I exercise and stay fit, eat healthy, get plenty of sleep, avoid stress, minimize alcohol and do what my doctor tells me to do.

 

[Crohn's Mom]

Hey DDCleveland

I just saw your post ~ kinda late, but welcome to the forum.

I was glad to read your story about being on Cimzia for 2 years and it working so well for you!
I am so sorry no one responded ~ if you see this and want to come back and share some of your experiences with Cimzia ( maybe start your own thread) I'm sure it would be greatly appreciated !
Would love to hear :hug: