Cymzia- anyone else taking it?

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obxgal510
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/9/2010 5:32 PM (GMT -7)   
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

mirowpl
Regular Member


Date Joined Nov 2009
Total Posts : 380
   Posted 3/9/2010 6:22 PM (GMT -7)   
i took it for about 13 months. no side effects. but it did not help me. had a blockage on 14th month and then surgery 90 days after the blockage. I had a nurse come give me the shot. it was paid for by cimzia and insurance.

Dimon
New Member


Date Joined Mar 2010
Total Posts : 8
   Posted 3/9/2010 6:35 PM (GMT -7)   
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!
Dimon
 
43 Female
Chron's at the distal ileum to the terminal ileum.
Diagnosed, September 2009.
 
Chronic Active Colitis, October 2009
Two fistulas 
 
Took Prednizone initally for about 2wks.
(40mg, tapered to 30, 20, to 10mg).
Been on Ciprofloxin and Metronidazole.
Took Lialda for about 4 wks in 11/2009.
Began Cimzia in Nov 10, 2009: 2 wk intervals (0, 2, 4, 6wks)
Curently taking Cimzia maintanence injections in the abdomin every 4 weeks, (2 shots- 400 mg each).
Taking iron supplements twice daily (325mg twice daily).
I'm allergic to Sulfasalazine and Bactrim.
 
Better, but would not characterise myself as in remission.


vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 3/10/2010 4:01 AM (GMT -7)   
I've been on cimzia since 5/09.  I saw improvement but not great.  Had an abcess 9/09, treated with antibiotics.  since 10/09 feeling wonderful until my first gallbladder attack 11/09 (I thought I had perforated).  I did have pain in my leg muscles from the very beginning, ranging from being a nuisance to severe.  By Dec 09/Jan 10 began showing signs of MS, peripheral neuropathy and the muscles in my legs and my feet were severely painful, but blood work showed crohn's was in remission...what to do?my GI said I had to stop the Cimzia immediately but I suggested spacing the dosage, what have I got to loose?  around Jan 20th I went to one shot every other week and all those side effects are completely gone.  I even feel as tho one shot a month could hold me, but not ready to risk that yet.  My GI is amazed as he says it makes sense, since all other meds are tapered down once remission is achieved, why not this one.  So far blood work confirms that I'm still in remission, no changes since spacing the shots to every other week.  Now my problem seems to be short bowl syndrome as the healing has caused shrinkage resulting in malabsorption.  I'm not loosing weight and blood work shows vitamins are in normal range yet I have cracked/peeling corners of my mouth.  I have lots of energy, feel wonderful, it just kind of a nuisance.  I've really been hitting the vitamins hard, and it is improving, also applying zinc oxide around my mouth. 
I do get some real obnoxious gas but no pain.  I've been taking Xiflaxin which totally cures it, but not sure if this is going to be an on going thing or not.  Overall, Cimzia is the first drug that works for me
diagnosed 13 days following an MMR vaccination at the age of 44
tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009


jseberry
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/12/2010 5:58 PM (GMT -7)   
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.

obxgal510
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/15/2010 6:54 PM (GMT -7)   
Thank you all for the questions I had regarding Cimzia. The Pharmacy is sending me the medication to be delivered on Thursday. I am nervous about my husband administering the medicine to me. I think the first dose should be given by a nurse (either home health or through my GI) He gives me B12 once a month but with this medication it needs stuck in just he right place. After 10 years of Remecaid- just a little nervous about this. I do plan on taking the same protocols I did with Remecaid (25 mg Phenegran, and 50 mg of benedryl) wait 30 minutes then give the shot - then cross our fingers... and many prayers.

Again - many thanks to all the posted and if there any others that can help with this- please let me know...

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 3/15/2010 10:04 PM (GMT -7)   
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.

vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 3/16/2010 2:30 AM (GMT -7)   
I'm squeamish about needles so I have my sister give me the shots...she's a nurse.  She thinks it would be really difficult for me to give them to myself since I have no fat on my stomach to squeeze .  She has trouble squeezing together enough skin to accomodate the amount of thick corn sryup like stuff. and then you can see a big lump of it under my skin until it is absorbed.  We were told not to massage it in...is that what everyone else was told? and also alternate sides each time.  They said to give one shot in the thigh and one in the stomach.  I'm just doing one shot every other week now and they're only in my stomach.  Doing really well with this, all side effects are gone 
diagnosed 13 days following an MMR vaccination at the age of 44
tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009


Dimon
New Member


Date Joined Mar 2010
Total Posts : 8
   Posted 3/24/2010 1:02 PM (GMT -7)   
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. :-)
Dimon
 
43 Female
Chron's at the distal ileum to the terminal ileum.
Diagnosed, September 2009.
 
Chronic Active Colitis, October 2009
Two fistulas 
 
Took Prednizone initally for about 2wks.
(40mg, tapered to 30, 20, to 10mg).
Been on Ciprofloxin and Metronidazole.
Took Lialda for about 4 wks in 11/2009.
Began Cimzia in Nov 10, 2009: 2 wk intervals (0, 2, 4, 6wks)
Curently taking Cimzia maintanence injections in the abdomin every 4 weeks, (2 shots- 400 mg each).
Taking iron supplements twice daily (325mg twice daily).
I'm allergic to Sulfasalazine and Bactrim.
 
Better, but would not characterise myself as in remission.


obxgal510
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/25/2010 5:44 AM (GMT -7)   
Well- I have waited for over a week for home health to come give me and my husband directions- but because my GI forgot to sign the orders, it has been held up. During this time I am getting worse and worse with joints and pain. Last night even started with the crohns abdominal pain in the illeocecal area where I am "suppose to be diseased" (last 2 colonscopy's were clean) I suffer from the system issues of crohns (ireitis, joint pain, muscle pain, fatigue)

The Cimzia was delivered 8 days ago and has been sitting in my fridge since then just waiting. Husband is going to just give it to me today and I will log any side effects into my medical journal that I keep.

I will tell you how it goes. I will say I was at the hospital the other day getting my mediport flushed and they said most of their patients in the infusion center have moved from remecaid to cimzia and are having great results. She had been my infusion nurse for many years so coming from her that was so very reassuring.

Again- THANKSSSSS for the help and advice and will let you all know how this goes:))

Dimon
New Member


Date Joined Mar 2010
Total Posts : 8
   Posted 3/25/2010 7:18 AM (GMT -7)   
Good luck! Thinking of you.
Dimon, 43 Female
 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 3/25/2010 9:58 AM (GMT -7)   
I started on Cimzia 9/2009.  The first 2 starters were done at my doctors office. I was doing great until about 3 weeks ago. Crohn's flaring and my lovely joint pain.  I am due to inject tonight. I have to call my doc next week and let him know how I feel. If not any better he is going to order me another one to take in 2 weeks and see if we can't jump start it.    Over all I have been pretty happy with it.
Living with Crohn's Disease since Jan./2000 
I'm a true Crohnie with IBS and Arthrities too. I have Crohn's very mild compared to a lot of Crohn's people.
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Tramadol for the pain
                               Cimzia Injections. Just started on 9/30/2009                      
No Surgeries
 


obxgal510
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/26/2010 8:07 PM (GMT -7)   
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!!!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/27/2010 6:55 AM (GMT -7)   
Good for you, I am glad you did it and all went well. Keep us posted on how your doing.

Also, just a gentle reminder, please do not use ALL CAPS. Its very hard to read and in the cyber world considered as yelling. Thanks for your understanding. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 3/27/2010 9:24 AM (GMT -7)   
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!
Living with Crohn's Disease since Jan./2000 
I'm a true Crohnie with IBS and Arthrities too. I have Crohn's very mild compared to a lot of Crohn's people.
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Tramadol for the pain
                               Cimzia Injections. Just started on 9/30/2009                      
No Surgeries
 


GDen
Veteran Member


Date Joined May 2009
Total Posts : 703
   Posted 3/27/2010 12:02 PM (GMT -7)   
Yup, I'm tkaing it. Working good so far...
Cimzia, Asacol


vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 3/28/2010 3:14 AM (GMT -7)   
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.
diagnosed 13 days following an MMR vaccination at the age of 44
tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009


vls
Regular Member


Date Joined May 2005
Total Posts : 166
   Posted 3/28/2010 3:17 AM (GMT -7)   
sorry for the previous post. I just saw that I had already posted a reply a while back saying virtually the same thing.
diagnosed 13 days following an MMR vaccination at the age of 44
tried Colazal, Pentasa, Immuran, Remicade, Prednisone, Cipro, Flagyl, LDN, Osiris clinical study,  accupuncture, began Cimzia 5/2009


jperkin4
Regular Member


Date Joined Jul 2007
Total Posts : 26
   Posted 4/30/2010 8:10 AM (GMT -7)   
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

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 4/30/2010 9:03 AM (GMT -7)   
I took Cimzia in a clinical trial before it was on the market and we got it every 2 weeks.  I did great on it.  There were a couple times that I thought I started to have problems breathing, but then it went away.  They told me no one else had had that reaction.  After the trial was over, I switched to Humira for about a year and then went back to Cimzia.  While doing the loading dose of every 2 weeks, I did great again.  After you have to switch to once every 4 weeks, it stopped working.  My rheumy said her arthritis patients are all having the same problem and it's not working for them.  She tried getting it approved more often but insurance says no, as does the latest research (according to her).  Now we are trying one shot every 2 weeks, but it's not helping much with the arthritis either. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 4/30/2010 9:52 AM (GMT -7)   
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...
"The earth laughs in flowers"

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