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Cimzia Club Support Group

Manzyb, I didn't know I was in a flare until I got the results of my colonoscopy back. Then they wanted me to do a pill cam. By the time I got the pill cam results I was having D every day. So since they caught it so early my only symptom this time has been the big D. That is slowly getting better. Next week will be my third set of shots and at this point I am only having D once a day instead of 5 times a day. Slow steady improvement but no overnight success! Sorry to hear you are in so much pain, I hope it kicks in for you soon.
 
I'm happy that you're only having the D once a day! that is great. Is that the only time you go to the bathroom, once a day? It's been such a long time since I've only gone to the bathroom once. I don't know if i remember what its like! LOL

I'm really hoping it starts kicking in soon as well! I feel like I have a little more energy, but still going to the bathroom 10 or so times a day. I remember when i did the humira loading doses...the improvement was immediate. i want to say by the 2nd or 3rd day after my first 4 shots i was feeling fairly better. I guess that's why I thought i'd wake up one day and magically feel amazing! LOL Wishful thinking!
 
I'm getting my first injections tonight...FINALLY :) Did anybody notice feeling any different like, sickness wise overnight. I'm really nervous.
 
Let us know how it went! Some people feel fluish or have headaches. I just felt really achey and tired afterwards.
 
Well I got them last night. Has anyone ever actually felt like the Crohns got worse after the injections. It's hard to explain but I can't even stand up straight because of the pain in my right side. Theres also a sharp pain in the same area when I take a deep breath. I went to the hospital a couple days ago for something similar and they sent me home saying I was "backed up" but today it feels much much worse. Not sure what to do here.
 
I just get really tired and feel a bit like i've been run over by a truck after the shots. I had my second set of shots yesterday, but today I don't feel like I did right afterward. I can't really say it made my crohn's feel different either way. I hope you get to feeling better.
 
Does anyone have a complete lack of appetite while on Cimzia?? It's just a little something I've noticed. By the day food seems less and less appealing and when I do eat, can only eat a little bit before I feel so full I could vomit! Crazy. I guess it could be the stricture I have doing it too. I had that happen before.
 
I was on Remicade for 10 years and then my doc. said it wasn't really working, but I felt it was. I had gone from every 8 wks to 7 to 6 to 5 to 4 then I would have been fine with every 3 weeks, but my doc. said that meant it wasn't working any more. I don't think the frequency changed that much over a 10 year period.

Anyway, now I've been on CIMZIA for the last year and a half and I don't feel like it's working. I haven't had even a month without a flare the entire time I've been on it. Now my doc wants to do another colonscopy because he says CIMZIA is still working and now I have IBS, which is causing all of my pain, not!

Btw, I rotate between thighs and stomach every othere month, 2 in thigh one month, then 2 in stomach the next and so on. I think they both hurt the same. The stuff is like molasses.

How long have people actually gone without pain between shots? I'm trying to see if he's right about it working or not. I don't think so.
 
Alexis, I feel like I've been hit by a train the next day after my shots every time. I feel nauseous and just plain horrible when I wake up the next morning, but it always goes away later that night.
 
I sleep most of the day after I take the shots. I have switched to one injection every 2 weeks because I was having break through pain by week 3 taking the 2 shots once a month. I'm now having break through pain by a week in, and was worried it wasn't working. My rheumatologist told me this is my new normal, that I will never be completely free of all pain. She has me on Celebrex and a muscle relaxer (forgot which one) and wants me to take these everyday as a maintenance routine.

I have to be honest... at 40 with crippling arthritis I was not prepared to hear that. I truly believed that because it came on so fast, it would go away just as quickly and stay away unless I had another flare of my Crohn's. Reality bites. Any advice for me on how to deal? I'm tired of feeling sick, I'm tired of having to tell my kids that I just don't have the energy to go play, I'm tired of feeling like I just can't keep up at work.

Thanks for listening to my whine fest. It's been a rough day.
 
hi taxdaycrohnie!

My doc, too, told me that there is no silver bullet that will make me feel completely better. I just refuse to believe this. I've had Crohn's for 12 years, never been in remission, but I keep trying to hold out hope.

I don't have a whole lot of advice, as i am a new mom and haven't had to deal with really active kids yet. My 6 month old takes her toll on me, and I feel bad about that, but I just keep trying to lift my head up and hope for a better day tomorrow.

Keep your head up. It's really hard, but just hang in there.
 
So, i had my 3rd set of loading doses this past Friday. Still not doing so hot, although, from the results of my CT scan and blood work I did win myself a nice prescription of prednisone. Awesome. I'm doing 40mg for two weeks and then every week going down another 10, and then after that will continue on 10mg I guess until I see the doc in December. I believe if i'm not feeling much better, or we dont' see much improvement its either going to be Tysabri or resection time. The doc told me to think really hard about changing my mind to take Tysabri. We'll see.

I hope all of you out there are doing amazingly with the Cimzia!
 
With the side effects of Tysabri, I think I would do I a resection. I have a friend on it, who has MS, and she swears by it, but I'm not ready for the possibility of a brain infection. I'll be praying for you.

Btw, you're daughter is absolutely adorable.
 
I have switched to one injection every 2 weeks because I was having break through pain by week 3 taking the 2 shots once a month. I'm now having break through pain by a week in, and was worried it wasn't working. My rheumatologist told me this is my new normal, that I will never be completely free of all pain.
I am in the same situation. I switched to one shot every 2 weeks about 4 months ago. My symptoms are gradually getting worse. I just had another scope, which showed ulcers in several spots in my colon and TI. But it wasn't as bad as my pre-Cimzia scope back in January. I refuse to let this be my new norm, without trying other measures. We added Imuran and I'm giving it a couple months to kick in. If this doesn't work, I'm going to ask about switching to Remicade.
 
I recently started talking to my doc about switching my shot to 1 every 2 weeks; she currently does not have any other patients on this schedule. I've been on Cimzia since July 2010 and although it has helped in some ways, I'm a little concerned now that it may be causing other issues. My main problem was always bleeding; which caused me to be severally anemic, even on 4,000mg/day of Pentesa. However, more recently I've had more issues with cramping and vomiting (hospitalized for the first time in August for 3 days and was put on Prednisone for about 2 months) I had cramping before starting the Cimzia, but only occasionally, and never vomiting. I was diagnosed in Oct 2006 and did pretty good for the first few years. Has anyone else had a similar experience with the Cimzia? The pain from the cramps is horrible, but I refuse to believe this is just how it is going to be.
 
Thank you Snowchic!

I talked to my doctor about the possibility of the brain infection. He said it was extremely unlikely to get it. What he told me that it occurred in people with MS that were taking the drug who already had a disease of the brain. I'm not sure if that's entirely accurate, but I trust the doctor a whole lot. However, I'd rather just go for the bowel resection. This damn part of my intestine has been really bad for the last 8 years and not gotten any better.

I did the last set of shots a week and a half ago, and I really just don't feel any different! I did get a prescription for friggin prednisone again. ugh.
 
Manzyb, after reading what I wrote about the brain infection, I realized that it was insensitive and for that I am sorry. I'm a very blunt person, but I have to realize that I don't need to say it, just because I think it. With that said, if you feel comfortable with trying this new med. then you should go for it if that's what you want to do.

As far as Cimzia working yet, I've been taking the shots for about year and half now, and I don't think it works nearly as good as Remicade worked for me. Since I have been on Cimzia, I am now severely allergic to garlic, which is not fun, when it comes to going out to eat anywhere. Also I haven't had an entire week without at least one Crohn's attack (that's what I call them, because that's what they feel like to me, flare just doesn't even come close). When I was on Remicade I could go an entire month without one.

I'm glad you trust your doctor, that is great. I don't have that privilege yet. I'm fighting my doc on this Cimzia thing all the time. He won't take me off until he does another scope and I'm not for that, at least by him. I'm about to go back to my original doc that diagnosed me with Crohn's and put me on Remicade 10 years ago. He's in my home state, Maryland, but I have to wait until I get different insurance so I can go to an out of network doc and not get charged an arm and a leg. I'm going to see if I can get back on Remicade and give it another try.

So about the Cimzia, I'm not one that has had great success with it, but I wish you luck whatever you decide to do.
 
Snowchic- I didn't think you were insensitive at all!! I didn't take anything by that. I apologize if I made it seem that way :)

I know a lot of people talk about the possibility of the brain infection with Tysabri. From what i understand though, its just like Remicaid and Humira saying that you can get cancer from taking it. I guess they all have their scary risks that they have to make you aware of. I personally don't want to keep holding on hope for the "next" medicine to work.

I LOVED being on Remicaid! That's the last time I can remember feeling good. Like a normal person good and not just a good crohn's day!! I still never reached remission, but I could at least handle it and make the best of my life. Unfortunately for me, I developed a severe allergic reaction after taking it for 5 years.... crazy, I know.

I hope that you get some answers that you are looking for too. We all deserve nothing less than being able to feel somewhat human.

My next Cimzia dose isn't for another 2 weeks. I guess it was doing something during the loading doses because I had less trips to the bathroom.. but now I'm back up to 10+ times a day and back on pain medications some days. oh well. I had some hope in the medicine at the beginning, but that's fading very quickly.
 
I just gave myself my shots for this month, let's see if it works, I'll keep you all posted.

Manzyb, you did not come across that you thought I was being insensitive at all. I felt it about myself and wanted to communicate it. And you are right, Remicade, Cimzia, Humira and Tysabri, they all have bad side effects. It's unfortunate that we have to choose our poison, but I guess it beats the alternative. This is the last time I'm going to accept this one, if it doesn't work. I'm giving it one more chance.
 
In the beginning I was all for this medication because it seemed like it worked after the first two shots. I just did the last of the loading doses and I just have felt like crap ever since I posted on here I was feeling good, I guess I spoke too soon :(
 
Well I found out today that I will too be joining the Cimzia Club, if all precerts go well. I will be having a chest x-ray and a TB test soon! I see the GI this week on the 8th and hope to get more info. I am currently on Pentasa, oh so many pills and the dreaded Pred since Saturday! Entocort or budesnoside did not work!

Having been reading up on the Cimzia here and plan to go to their site soon!
Thanks for sharing all your infomation, it has been so helpful!
 
New to Forum
started Cimzia at least 2 years ago, Remicade didn't work at all.
Doing well on Cimzia, no side effects. Dr has me on 1 shot every 2 weeks instead of 2 shots 1x month. Luckily, my wife doesn't mind giving me the shots, I don't like needles.
I do find the longer you let it warm up, the less it stings. I still have Cimpay, not sure why, but not complaining, have you ever seen how much this stuff costs if you don't have insurance? not good for those.
hope everyone stays well
 
The cost is insane! My GI has changed his mind and now I am going to be on Humira, once this chest infection goes away. I am so ready to taper off the pred. So glad to hear the Cimzia is working well for you! I am not too scared of needles, but I think I will have my husband help!
 
Hi all, I have been on Cimzia for about 2 1/2 years. It took almost 3-4 months to feel better. I think it was working, but these past few months I ended up having surgery for fistulas. I was off for 2 months and am back on it again. The surgery helped, but I am still recovering. I could tell about the 3rd week after my shot it was wearing off. I didn't know there was an option to take it every 2 weeks or maybe 3. I may talk to the dr next visit about that. Has anyone had luck with Cimizia and Methotrexate together? Have you seen any research articles on it?

If you need help paying look into Cimzia's Cimpay. They will cover up to $500 a prescription for a year. I have had it for 2 years.

Kit
 
I was allergic to Cimzia and many of the TNF drugs so they are treating me with steroids and methotrexate. You can take them together but I was not successful due to my "dirty gene allergies"....lol.Good luck Kit.
 
I have been reading through the thread and I would be almost embarrassed to list all the drugs I had an adverse reactions too. I'm afraid I am one of the unfortunate folks whose body (GI) is in constant turmoil. My C-reactive and sed rates stay elevated and I am in constant battle with Addison's from the steroid use. The list of drugs and their complications would be too long. I am always so happy to hear when folks have success. Just because I have had a rough road, I wish the best for anyone else.
 
I am soo sorry you have had a rough go of it. Have you tried any Probiotics? My GI likes that I am taking some. Keep your chin up!
 
I have tried yogurt and probiotics. My GI doc has diagnosed me with Chronic Crohn's colitis. I do keep my chin up but I also am realistic...it is what it is...I am okay with that. As I told my doc its a daily "crap" shoot....lol.
 
I think my GI doctor wants to switch me from humira to cimzia. I haven't tried taking anything alongside the humira, upping the doses or trying to boost it though.

I am worried because I've read through this thread and it doesn't seem like there's a single person that this drug has really helped in the long term..

Now there's really no activity in this forum, so I'm wondering if this switch too soon might be a bad idea..

I've only heard from him right after a colonoscopy so I barely remember anything he said. I showed inflamation and he couldn't get through a part with the scope. I've had the CI scan where I was only able to drink 1/3 of the berium and that showed more "Chron's" activity. I'm going in in about 2 weeks for all the results and to start talk on what to do next with a medicine change and talk about possible surgery. I'm sure I'll have more info to bring to light then.

It really seems like whenever I have gas is my really bad days. I haven't been able to find anything to help this part yet. Once it's passed I barely feel any cramping at all.
 
I ended up with two fistulas and a really bad stricture while on Cimzia; I started Cimzia July 2010. I had surgery March 22, 2012 after horrible pain started in August 2011, and also switched GI docs (my story leading up to the surgery is in the surgery forum). The new GI doc didn't recommend I continue treatment with Cimzia. Since I'm now considered to be in remission he has me on Apriso as a maintenance drug. I seem to be doing really well...about 4 months out. I did really well in the beginning on the Cimzia and thought it was the miracle I was looking for, unfortunately it didn't turn out that way.. :(

I think there are people who have done really well with it, I'm just not one of them. So far so good with the surgery and Apriso, so I'm keeping my fingers crossed! Good Luck!
 
I ended up with two fistulas and a really bad stricture while on Cimzia; I started Cimzia July 2010. I had surgery March 22, 2012 after horrible pain started in August 2011, and also switched GI docs (my story leading up to the surgery is in the surgery forum). The new GI doc didn't recommend I continue treatment with Cimzia. Since I'm now considered to be in remission he has me on Apriso as a maintenance drug. I seem to be doing really well...about 4 months out. I did really well in the beginning on the Cimzia and thought it was the miracle I was looking for, unfortunately it didn't turn out that way.. :(

I think there are people who have done really well with it, I'm just not one of them. So far so good with the surgery and Apriso, so I'm keeping my fingers crossed! Good Luck!
Thank you for the quick reply. That's scary and I'm glad to hear you're in remission now. I'm really freaked about even thinking about surgery but sounds like it's a big possibility for me.

I also am thinking about trying to push out starting cimzia.. Squeeze as much out of the humira as possible and continue to make my diet more strict..

I feel the diet change really seemed to help the most out of anything..
 
I was really freaked out by surgery at first as well. I ended up in so much pain daily that once it was booked I actually felt relieved. The pain I was in prior to the surgery made the pain from the surgery seem not so bad (I was off all pain meds the 4th day post-op). From what I have read from others, those that were in a lot of pain prior don't seem to think the pain from is too bad. Hope your doc is able to get things under control with meds; I actually didn't really have pain before August of last year so the Cimzia was for other issues.
 
Just joined the Cimzia club and have been reading. I have seen a couple places mention that it can cause a blockage... can anyone explain how/why that happens?
 
I honestly think in my case it 'healed' the issues I was having before I started it. I had a lot of bleeding issues (one of my largest symptoms from the beginning); that stopped a few months after I started on Cimzia. So, I believe that in the healing process it caused a lot of scar tissue in my intestines which eventually lead to blockage issues because my intestines were narrowed so much. The doctors haven't really been able to tell me exactly what happened, as I'm not sure anyone really knows. This is just kind-of my feeling as to what happened. I have been off Cimzia since the surgery and on Apriso. Not all meds work for everyone with IBDs,so unfortunately there seems to be a lot of trial and error. GL!
 
Location
SC
I'm so glad I found this club. I have been on Cimzia since April 2012. Hate giving myself injections, but up until November I had been flare free. However, I'm not quite sure if I have UC or Crohns - it is being called Regional Colitis and my dr. refers to both conditions. I had crazy itching on Imuran after 1 1/2 years, so my dr. decided to try Cimzia. I skipped Humira, and Remicade - why I really don't know.

My scare now is that I am having a flare the dr. would like me to do 400mg every 2 weeks instead of every 4 weeks. Has anyone taken this dosage other than the starter doses? We are also adding predinsone to it as well. I hate pred - makes me eat like crazy (I'll fight you for a french fry) and alters my mood, my skin, and just YUCK. My next worry is I have always heard one you go up you can't go back, so if I start taking this 400 mg every two weeks, will I never be able to back to 400 mg every 4 weeks? I have started itching with the Cimzia as well as having alot of joint pain. I'll keep watch on that closely, too.

Lastly, where do you go if the Cimzia becomes ineffective? Sometime I would like to quit all medication and start all over just to make sure - I know I am not well, believe me, but when I read these forums, I have to wonder, I don't seem to be on as much medications, I've not ever been hospitalized or had surgery on the colon - did have my gallbladder out last year though - maybe related/maybe not. I am thankful that I have not had to undergo anything like that, but it also scares me too.

Krista

Diagnosed regional colitis 2005
tried ASA's and Imuran
Currently on Cimzia (400 mg/mo)
Wellbuterin
Vitamin D
Probiotics
Prevacid 30 mg

Will be on starting 30 mg pred and 400 mg/2weeks Cimzia.
 
Krista - My daughter progressed rapidly through all of the biologics, having only limited success with Remicade and none at all with Humira or Cimzia. A year ago last August her peds GI suggested we try a medicine call Leukine [(sargramostim) a man-made form of granulocyte-macrophage colony-stimulating factor (GM-CSF)]. It is also an injection, though not as painful as the Cimzia, my daughter reports. The med is used to boost bone marrow, thus white blood cell production. Seems counterintuitive for someone whose immune system is in hyper-drive, but it is akin to giving stimulant medications to someone with ADHD - it appears to shock the body into self-regulating. For whatever reason, it has worked quite well with Hannah. If I remember correctly she started on daily shots and then after a month and a half went to three a week, then to once a week, which is where she is at now. There aren't a lot of long term studies for this one. It had great success in early small trials, achieving remission in most of those studies. But when they blew it up to large trials the success was greatly diminished. Hannah's doc said researchers now believe there are different sub-types of Crohns and that is why in larger studies they don't always get as good of results. Either way, it was a God send for Hannah. 2012 was her first year in five that we didn't spend at least a week in the hospital. Might be worth checking out with your doctor.
 
We are moving Hannah to an adult GI this year. Her rock start peds doc was recruited to Mayo :-( I was diagnosed with UC in the fall (I think I have Crohns, but am also switching docs due to insurance change so wasn't thoroughly evaluated and the first GI doc I saw knew nothing about IBD) so Hannah's doc referred us to the same GI. I am hearing people talk about not staying on Leukine for too long, so am guessing we will have that conversation with the new doc next month. Another med that is increasingly on my radar is low dose naltraxene (LDN) so we might look into that if Hannah can't stay on the Leukine.
 

nogutsnoglory

Moderator
Has anyone with chronic inflammation shown by scope or imaging gone on Cimzia and had it reduced or eliminated as shown by another scope or imaging test?
 
I've just joined the Cimzia Club. God, I hope it is the answer. I don't know how much more of this I can take. I've been steroid dependent for awhile and my bones are turning into dust. I NEED Cimzia to work :(
 
Hannah didn't respond to Cimzia (or Humira or any other biologic after a short improvement on Remicade, which of course she ended up having an allergic reaction to). She has since been on an off label med called Leukine. Its done wonders for her. We aren't sure about long term side effects and are now consulting with hematology as they have the most experience with the med. However, her new rockstar doctor has recommended we stay on a low dose of it as long as she's doing well. The next meds in the line up, for consideration, should we need them are Tysarbi and another RA med (can't think of the name right now). Interesting improvement with Tysarbi is that they can now test the patient for a specific antibody. If the patient has the antibody, they can't take it b/c of the risk of a fatal brain infection. If the patient doesn't have the antibody they can (nobody without that antibody has ever gotten the brain infection). I am thankful that there is an expanding horizon of treatments for this awful disease!
 
Hi all!

I'm new to the site and will be starting cimzia some time this week. My doc says that because my past history with biologics has been shown to lose effectiveness quickly she wants to combine it with another treatment. She wanted to do 6mp but my mom reminded me that i had a possible pancreatic reaction to it years ago.

With that being said, she now says 6mp is out of the question for fear of pancreatitus. So she wants me to do methotrexate and cimzia. Is anyone doing this? is it working? are there any side effects that i should expect?

I'm extremely nervous and i hate needles. The thought of a needle once a week for at least of year is rather depressing. But i know i need to do something quickly because apparently my crohns has been out of control, i just wasn't feeling it due to my ostomy. Any info would be helpful. Thanks.
 
As mentioned above, I just started Cimzia. I'm also doing methotrexate, 7.5 mg (orally) every week. Are you doing methotrexate sub-q along with the Cimzia? Because if so you might be able to switch to oral methotrexate (not sure what the pros/cons of shot vs pill are) and then Cimzia would only be every 4 weeks (it's every 2 weeks for the first few doses, though), which would be a lot better than shots every week, since you don't like needles.
 

nogutsnoglory

Moderator
I'm considering adding methotrexate in addition to Cimzia. Just be aware that if you desire a family (male or female) this drug is not for you. It acts as an abortifacient.
 
Josh, I am told i'll be doing the needle, the pills werent given as an option. The doc just said my levels are so out of wack that she wants to hit the crohns hard. I only read about the pills on this forum. I will ask tomorrow when i get trained on how to self inject what the difference is.

No guts, i was told that while i can't get pregnant while on it, i can after three months of being off of it. She wants me to try for a year. Funny too, because the only reason i started going back to the doc two months ago was because i wanted to be proactive so that I could get ready to move towards having a family. Now I end up with new conditions and back on crappy meds ...go figure
 
I am two weeks post op from ileum and cecum resection. I am feeling better, just dealing with the recovery from the surgery. I saw my GI today and we are starting cimzia Monday morning. I have been on Remicade for the past two years and it hasn't been doing anything to help me. I am one week discharged from a 2 week hospital stay where I was on super high dose of iv steroids, Cipro, Flagyl, fluids, and pain medication. My dose of steroids while in the hospital was 120mg iv and eventually brought down over a 2 week period to 40mg pill form. I also had some complications with my kidney and right ureter being so scared that it was actually attached to my intestines. So I had a couple stents put in and they were just taken out yesterday thank god! Currently I am on prednisone 35mg, kelfex 1500mg daily for 5 days, enalipril 10mg daily for high blood pressure, xanax 1mg every six hours, norco 10/325 prn as needed for post op pain, multi vitamin, calcium with d, vitmain b, probiotic, and colace 100mg 1-2prn for constipation. My last Remicade infusion was a month ago 10mg/kilo every 6 weeks and I recently just stopped taking asacol 2400mg 3 weeks ago. I am nervous and excited to start cimzia Monday, I am not to sure what to expect. I got a call from the specialty pharmacy telling me what to look out for and that the most common side effects after the loading doses are flu like symptoms, fatigue, nausea and vomiting. Redness and swelling from injection sites. What place is the least painful place to inject? Anyone have and suggestions. I am thinking my upper thigh because my stomach is still all bruised and sore from surgery.
 

nogutsnoglory

Moderator
The fatty parts of the thigh are the least painful. I would definitely avoid your stomach now and certainly if you inject there be sure it's at least 1 inch from any scars.
 

ameslouise

Moderator
Not me. I just finished my loading set. I can't report any changes yet. ��
Hey Sue! Fancy meeting you here!

I just started Cimzia too - about the same time as you.

Does Cimzia make anyone else an emotional wreck? I start crying almost as soon as I inject it.....
 

nogutsnoglory

Moderator
Why are you crying from it? Due to the injection pain? I don't like it but don't find it too painful.

Are you letting it sit at room temp 30 min before? Best thing is to just plunge otherwise pushing against the skin hurts. There may be numbing creams too but id ask your GI.
 
Does Cimzia make anyone else an emotional wreck? I start crying almost as soon as I inject it.....
I hope it doesn't have that effect on me. Humira used to do that to me.I'd start balling as soon as it was time to take it, and it would take an hour for me to settle down....i was emotionally unstable with that pen
 

ameslouise

Moderator
It's not the injection itself or the pain of the shot (though it is def more painful than Humira IMO but not as painful as a heprin shot!). It's just emotional for some reason. I guess I am just pissed and sad that I have to be on all these meds...
 
Just got my 2nd dose. I definitely was feeling better after the first dose, but still having on and off nausea. Still, improvement that quickly is great, so hopefully the nausea goes way down now as well! :)

Comparing it to Humira, it doesn't seem as painful to me. Interesting about that.
 

nogutsnoglory

Moderator
I find it less painful than Humira. First injection I felt so tired and had a sharp headache and body aches, second injection felt fine and third felt tired and body aches.
 
Ames!
It just sucks! Right! Go ahead scream cry and yell! I'm listening....and so is everyone here! 😄 I curious about that leukeline drug..I googled it and they seemed to have stopped their research (see lannaklingenbergs post). Mmm...
Sue
 
Does anyone get bad gas from this? The past week or two I've had the worst gas. All day, every day, and it's making my stoma crazy, especially at night. I've had 2 leaks so far as my bag fills with output, and mostly air, and then it has nowhere to go but force itself out.

In the past 2 weeks, the only things that have changed are starting Cimzia, feeling somewhat better and being able to eat some real food rather than just feeding tube stuff, and I've started taking my acne medicine again.

The food I've never had problems like this with before when I could eat fine, and I'm eating different stuff every day, so that definitely isn't the problem. The acne med I've been on for close to 2 years and again never had the problem when I was taking it before. I only stopped because my throat was so bad that I was avoiding anything I didn't need to take by mouth. So that leaves me with the Cimzia...
 
I have been on Cimzia for over 3 years and have not had that reaction. If I was to make a guess it is your body trying to adjust to eating more solid food again. You also might want to try not to eat gas producing foods. That all being said, everyone seems to react differently to things.

@Ames- Crohn's can be very frustrating and having to take medication constantly can be overwhelming. Hang in there and let your body heal.
 

ameslouise

Moderator
I had a little breakdown today - but I think that was because I found out I have another two months on the Flagyl which means I will have a SOBER birthday! Not that I need to get drunk but it would be nice to enjoy a little glass of wine over dinner.....
 
Ames, just to let you know my husband found me Alcohol free wine. It is called Fre. It has many different varieties. I like it, but have been alcohol free for almost 6 years. There is also alcohol free (well .05%) beer and you can get mixed drinks alcohol free. I know it is hard to adjust how you are used to living, but unfortunately welcome to the Crohn's world. It sounds like it is time to find someone to talk to for a while to get out some of your frustrations, worries and such. Just a suggestion.

Have a wonderful, wonderful birthday!
 

ameslouise

Moderator
Thanks everyone! I guess I am just overwhelmed by it all. I have good days and bad days - I' know you can all relate to that!
 
Just a quick update for me. A couple days after my 1st loading dose my symptoms were a lot better. That lasted until a couple days after my 2nd loading dose, when my previous symptoms started coming back, gradually. I just got my 3rd and final loading dose today; dose 4 is in 4 weeks. I'm feeling about the same as pre-Cimzia.
 

nogutsnoglory

Moderator
Josh is it possible you had a placebo effect at first? Cimzia usually takes a while to kick in but as many as 20% do find a benefit in as little as 8 days.
 
It's definitely possible. I thought it was very quick to work so well, but I always had an immediate response to remicade this past year when I was taking it, and then it would wear off quickly. So similar situation. I'm just going to give it time before drawing conclusions. I know it's typically given like 3 months to really start working, right?
 

nogutsnoglory

Moderator
It usually takes 4-6 weeks to see a marked difference and 3 months for full effect. That's typically but individuals vary. Cimzia usually has a longer half life than Humira so it may work longer for you in the body.
 
I think that they told me that it takes a few months to get in the system and help. I seem to remember that is how it worked for me. I have been on it for quite a while now. I did have a flare and surgery, but now I have doing well for over a year now. yes, I am still on Cimzia.
 

nogutsnoglory

Moderator
Kit that seems awfully long. A drug rep told me 4-6 weeks for physical changes and 3 months to get a sense of whether to stay on the drug or not.
 
Noguts, awfully long to be on the drug or for the changes after starting the drug? I did feel some changes sooner than 3 months, but I would say it took 2-3 to see the full effects. What is your opinion about me going back on Cimzia after surgery, should I have changed drugs? It seems to be working really well for my intestinal symptoms now. I have been flare free for over a year.
 
I wouldn't change drugs if you are doing well, kit! I would stay on it. It's great u have been doing well for so long!
 

nogutsnoglory

Moderator
Noguts, awfully long to be on the drug or for the changes after starting the drug? I did feel some changes sooner than 3 months, but I would say it took 2-3 to see the full effects. What is your opinion about me going back on Cimzia after surgery, should I have changed drugs? It seems to be working really well for my intestinal symptoms now. I have been flare free for over a year.
Oh I meant awfully long for full effect. I think at the 3+ month mark you know if the drug is working for you or not. I think if the drug is helping absolutely stay on. Why fix what isn't broken?
 
Hi y'all. I am starting Cimzia soon (just waiting on insurance) and wanted to know what to expect. I have been on both Remicade and Humira for my Crohn's but had an allergic reaction to Remicade and got drug-induced lupus from Humira. Needless to say, I'm a little freaked out to start Cimzia. I would love any advice/feedback. Thanks so much!
 
I'm on Cimzia and still prednisone. I have had no bad reaction. What's a drug induced lupus? Does it go away when u stop the meds?
 
Drug-induced lupus is a lupus-like syndrome that does(eventually) go away after you stop the medication that causes it.
 
I actually have done well on Cimzia for 4 years. My week before my shot I would get more fatigued, but then later would feel better. I did have a major flare and ended up having surgery while taking it, but I have been on it for over a year after and no flares. I really don't remember any side effects.
But remember everyone reacts differently to medicine, just take care and think positive.

Ask any more questions you want! I am sorry that you have had so many problems with medication!
 
Hello follow cimzians. I am new to Cimzia after Humira was not getting the job done. The first shot were painful. Thinking about icing The injection site down first. But the shot in the tummy ,wowee, it hurt. I'm thinking thigh next time around. Am I just a big baby or is there a little trick I could employ, like a shot of Jack, then a shot of Cim. Also are we basically alcohol free while taking Cim. I do like my cocktail from Tim to time.
 
Hi fellow Cim's. just saw something which peaked my interest. What in the world is Drug induced Lupis??? I'm not sure my insurance will cover a trip to the phsyciatrist (sp) if this happens.
 
Just a quickly. Any one here had a Total Colon removal procedure. Several year back I had Colon and, rectum removed,,pre cancer stuff, and I now have a J-pouch for a Colon, made up of the illieum. This cause nutrition absorption issues and now with Crohns attacking what is left of the small bowel, I use many vit supplements. Anyone have a similar thing going on??
 
@Twbuto- I no longer drink any alcohol, but I have found non-alcoholic beer and wine and I will do virgin drinks from time to time. I know it is not that same, but can give you the taste. I am on Asacol as well and I don't think you can drink with it either, so I actually never looked to see if you can't drink with Cimzia, I wasn't so I didn't look. Call your pharmacist where you get the Cimzia and they will know. I hope this helps!
 

nogutsnoglory

Moderator
"There is no reason to abstain from alcohol if you take Cimzia but, as many patients will also be taking methotrexate and/or other DMARDs, it is important to take alcohol only in moderation and after discussion with your specialist. For the majority of patients on methotrexate a modest alcohol intake is fine (The Patient Safety alert for the drug recommends that alcohol intake should be well within the maximum limits of 2-3 units per day for women or 3-4 units per day for men) but it will depend on the individual and on your blood monitoring tests for liver function."

http://www.nras.org.uk/about_rheumatoid_arthritis/newly_diagnosed/which_drugs_are_used/cimzia_certolizumab_pegol.aspx
 
On the insurance front for Cimzia ,,my bills is$ 80, per 2 injections. but with my Cimzia card which came to me thru Cimzia, the balance will be covered. My primary care insurance is BCBS. It bothers the crap out of me when I hear folks have to pay for this, when others whom have the luxury of good insurance(from and employer, lets say) pay nothing. God this system is broken!! Good luck friends.
 

nogutsnoglory

Moderator
Josh I'm sorry you aren't finding any change. Have you had any blood tests checking inflammation levels or imaging since you started?
 
No scopes since I started but I just had labs a week ago or so. Everything is fine there, really. However, my CRP and whatnot are always normal (or only very slightly elevated) levels, even when my scope shows heavy inflammation. Not sure why that is. :p
 

nogutsnoglory

Moderator
It may be worth scoping because you may have symptoms but you might be overall better. Just to know before you go on another drug.
 
Josh, I would still hang in for a while. I agree a scope may be a good call. I am sorry too you haven't felt any difference yet. On a side note it is a CimPay Card through Cimzia that will help up to $500 a prescription. http://www.cimzia.com/cimplicity/ to sign up.
 
It may be worth scoping because you may have symptoms but you might be overall better. Just to know before you go on another drug.
I had an EGD today (no ileoscope since all my problems are upper GI and my ileoscope a few months ago was clean). Esophageal inflammation has increased a little. Nothing drastic but it's gotten worse. My stomach and duodenum, all clear right before starting Cimzia, now have significant inflammation. I also have a 5 mm lesion in my esophagus which is new so waiting on biopsy results for everything but especially that to make sure it's benign, and also am getting set up to go to a different local place for an endoscopic ultrasound to further inspect the lesion.

I figured things would be about the same, maybe a little worse, but they've gotten quite a bit worse. I had been having some nausea before my previous scope so was surprised there was nothing in the stomach and/or duodenum, so figured it would be the same this time.

My doctor definitely things trying Stelara would be best since Cimzia hasn't helped, only gotten things worse.
 
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