Cymzia- anyone else taking it?

Is anyone else taking Cymzia? Not sure if I want to go on this. I had been on Remecaid for 10 years and although things are fine off Remecaid for the first time our back up plan is this new drug that I can self inject instead of sitting in a hospital infusion center for 4-5 hours then sleeping the rest of the day. I have read both good things and bad from JAMA and blogs. It will be a last resort drug as it would only be to treat the joint pain assoc with crohns. The stats and data on it shows a 65% chance of cancer. Some people have reported various cancers within the first year of taking this drug.

I am interested if anyone here has taken or is taking it and if so - what issues have you had? Thanks for the input

Hi. I'm taking Cimzia. I started taking it last November. I started with 2 shots, 400 mg each, every two weeks. They are injected in the abdomin or thigh subcutaneously. I do the shots myself at home. Now I'm on maintenance every 4 weeks. I have been recently diagnosed 9/09 with Chrons and UC and I'm new on here, so I don't have near the experience of most.

But, I was having all the horrible symtoms..horrible diarrhea, intense abdominal pain, etc, etc. It was so bad I could not take care of my kids. Now, I wouldn't say I'm in remission, but for about 3 weeks I feel really good. I can excercise, eat well, I have fairly normal bowel movements. I still have some abdominal pain, but not nearly as intense. For the last week leading up to the injections many of my symptoms return and I feel generally unwell. Some have reported that they have joint pain, but I've never experienced this. I haven't had any side effects as of yet that I know of. The thing I'm talking to my dtr right now is either supplementing that last week where I don't feel good or getting the injections closer together.

It's working for me. I haven't read that is is a "last resort (drug) as it would only be to treat the joint pain assoc with crohns." It is also used to treat Rheumatoid Arthritis. Cimzia blocks TNF-alpha (tumor necrosis factor-alpha) which is linked to triggering the inflamation associated with Chron's and RA. For more information see www.cimzia.com.

If you read the insert for Cimzia is does say that patients have reported either new conjestive heart failure, or can make conjestive heart failure you already have worse. You can't take if you have TB, and it is has a warning of patients who have developed Lymphoma, other fungi and conditions that have spread throughout the body and patients have died. But if you go and read about Remicade and other similar biological drugs..they carry the same warnings. I think this is related to the immune suppressing properties of biological drugs.

So, but there are risks in everthing. If you read too much about vaccines, you want to stop getting your kids vaccinated....so, have to weigh the risks and get your dtr to closly monitor you.

For me, it is a "miracle" drug because I feel so very much better. Can't even explain it is night and day before I started. I've only been on now for 5 mths, so I may have a different story later. I'll let you know!

My son has been taking Cimzia for about 6 months now. He had a fistula that we never got to fully close and stomach aches and more.
Cimzia closed his fistula and reduced his symptoms a lot. He has to take two shots once a month, but he says it's worth it.
Hope this helps. Write if you have any questions.

I took the first doses of Cimzia in the GI office so the nurse could show me how to do it - I was going from Humira to Cimzia, both are injected at home, but Cimzia is THICK and different in consistency to Humira so they wanted to make sure I knew how to handle that. There is no reason why you need your husband to do it for you unless you just want to. I just did it in my thigh before bed. It didn't hurt. There isn't really a specific place to put it, other than to avoid a vein or stretch mark.

My GI says there is no reason to have premeds for it like Remicade, though my first dose they did have me wait 30 min before leaving the office. I'm surprised they don't want you to do that for your loading doses...

I hope it works for you. I was on it for several months but was too far gone for any meds to help and ended up with surgery but we may go back to Cimzia again. It did help my joint pain a LOT which was so nice.

Obxgal510, I was wondering how things were going for you? I was really squeemish at first about the shots too, but I watched the nurse do it and my Aunt helped me for a little while. I finally told myself, you can do this. I did and I give myself my shots now. Really it's no big deal. I was really proud of myself. I have had better luck with giving both shots in my abdomin. For some reason, the effects last longer.

Good luck! Thinking of you.

UPDATE::: I GOT MY CIMZIA INJECTION YESTERDAY. I WAS TERRIFIED AS I DID NOT HAVE THE NURSE COME OUT WITH INSTRUCTIONS SOOOO HUBBY AND FOLLOWED DIRECTIONS FROM THE WEBSITE AND DID IT. THIS IS WHAT HAPPENED:

IT BURNED JUST A LITTLE WHILE BEING INJECTED AND LEFT A LITTLE BUMP BUT WENT AWAY AFTER ABSORBING IN 15 MIN OR SO

about 20 MIN HAD SHORTNESS OF BREATH LIKE SOMEONE WAS SITTING ON MY CHEST AND HAD TO JUST CONTINUE TO TAKE DEEP CLEANSING BREATHS TO GET THE OXYGEN TO CONTINUE FLOWING. I WAS A BIT IRRITABLE. HUBBY KEEP CHECKING ON MY NEXT TO ME IN BED EVERY 15 MINUTES UNTIL I FELL ASLEEP.

WAS OVERLY EXHAUSTED TODAY- BUT STARTED GETTING ENERGY BACK 1/2 WAY THROUGH THE DAY.

24 HRS LATER FEEL SOOOOOO VERY MUCH BETTER. JOINTS DO NOT HURT NEARLY AS BAD (ALMOST UNBEARABLE PRIOR TO) ENERGY LEVEL INCREASED AND OVERALL FEEL MUCH BETTER. NEXT INJECTION IS IN 2 WEEKS. ANOTHER 400 MG. THIS PAST INJECTION WAS 400 MG... WILL KEEP YOU POSTED ON HOW THIS IS GOING SINCE SO MANY ARE GOING TO THIS AND WILL HAVE THE SAME QUESTIONS I DID. I MAKE THIS CHOICE AFTER HEARING OPINIONS FROM EVERYONE ON HERE - THANK YOU SOOO VERY MUCH FOR YOUR HELP!!!!

Thats great!!! Glad you got first dose. It's strange you had some shortness of breath though. Make sure to tell your doctor
about that before you take the next one. Also make sure you drink lots of water. I try and drink about 2 tall glasses before
injection and then a few afterwards just to keep hydraded and seems to really help. I also always feel really tired
after doing mine so I do it close to bedtime. Once I wake up in the morning I usually feel pretty good.
Good luck on your next one!

I'm really glad you're feeling better and jealous that you can inject yourself.  I'm still a weinie and have my sister do it.  I also had shortness of breath after I first started Cimzia.  Like you said, it feels like an elephant sitting on your chest.  I also had that with Remicade.  Another side effect I had initially with the Cimzia was my face and ankles swelled up...9 lbs worth over night of fluid with the shortness of breath.  I took Benadryl and Tagamet and it went away in a couple of days, but other than that, I felt great as well.  After 5 months I was actually in remission (had an abcess the 4th month after starting cimzia)  By the 8th month the side effects became unbearable...pain in leg muscles and feet along with intense random nerve pain in feet, but no signs of Crohns.  We then decided to space the injections 2 weeks apart ( 200mg, or one shot,  every other week)  all side effects stopped.  Blood work stayed the same ...CRP still at .8  Now I just started having watery D, like a faucet was turned on, but no pain or cramping at all.  I never had this when my Crohn's was active.  Dr wants to run some tests on Tues to check for intestinal bacteria or parasite (I was in Mexico about a month before)  I just hope its not the Crohns because the cimzia has really helped.  I hope it works well for you too.

I was diagnosed with Crohn's about 20 years ago. My main symptoms are odd for Crohns, I mostly get the arthritis. I've never had any severe bowel symptoms. I've been on most of the common drugs for arthritis and Crohn's. Most of them don't seem to do much for me. If they do, the side effects seem to be as bad as the symptoms they're helping. I've been on Cymzia for about 6 months and I would count the Cymzia in that group. I would guess it's helping a little but my joints are still sore all the time and I have an occassional acute flair up.

I've recently been getting horrible bouts of cold sweats and shivering that last for about a day. It seems to happen a few days after giving myself the Cymzia shot. I have began tracking it, it hadn't occurred to me at first that they were related. Has anyone else experienced this? I wonder if this is some sort of reaction to the drug. I haven't reported it to my doctor yet. I'm thinking it's time I do.

Thanks,
Jim

Xena...how long have you been on for every 2 weeks? It took at least a month at this dosage for it to really kick in...My GI and Rheumy talked to the insurance to get it approved for this scheduling...