• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Cimzia Club Support Group

Sorry to hear about your troubles Lisa. I don't have any bleeding so I can't address that but it took about three months before Cimzia did anything for me but I still have to watch my diet. I hope things improve for you soon and I would definitely ask your doctor about the cause of the bleeding.
 
@Lisa same here no bleeding, and give Cimzia 3-4 months to start working. I think following up with the gastro is a good idea just to make sure they shouldn't look at something else.
 
I've changed up my injections to a half dose every two weeks instead of the usual full dose every four weeks. The goal is to see if the medication stays effective longer. Been doing this for the last five weeks, and so far it seems I'm usually inflamed to a small degree but that stays pretty constant instead of the ups and downs of doing this every four weeks.

Hope everyone else is doing well!
 
I had a couple of days recently when I had no inflammation I could feel, so I went a little outside of my normal diet of pizza and turkey and ate fried chicken. And it was amazingly good and it didn't cause me pain and it didn't get stuck inside of me!

That moment was the first time in 18 months when I thought I might not have scar tissue after all.

Also, sugar (and stress!) is what's making me flare. When I cut it out, I don't flare. When I drink it or eat it, I flare.
 
Hello All - I have been on Prednisone since the beginning of June for a flare for what I believe was caused by high pollen counts where I live. I have been tapering and have had several set backs, 1) had Shingles all of July 2) the pain came back at 20 mgm so we bumped it up and then tapered down to 15 mgm and had pain so again bumped up and now at 5 mgm I am having pain again. My GI doc wants to put me on Budesonide and Imuran along with the Cimzia. To say I am under a lot of stress at work is an understatement and I know this is not helping my flare heal one bit. I really don't want to go one any more medicine and reading about the Imuran does not make me comfortable at all. Does anyone have any experience with either of these meds?
:confused2:
 
I really don't want to go one any more medicine and reading about the Imuran does not make me comfortable at all. Does anyone have any experience with either of these meds?
:confused2:
I did not take Imuran with Cimzia but Imuran did cause really bad stomach pain after taking it for about a month. I tried it one more time because my physician wanted me to and the stomach pain came back within the day. I will not be taking Imuran ever again.

I have taken Entocort before which the active ingredient is Budesonide. This medicine worked well for me to reduce the flare, again I was not on Cimzia yet. From what I have heard it should be used for short term use just like other steriods, but it targets the intestines (not sure if large or small, but my Crohn's is in the the large). It is not suppose to have the bad systemic side effects as other steriods have.

I hope this helps and hopefully you can find a balance of medication that works for you!
 
Thanks Kit. It is so hard to know what to take and what to avoid. I am not big on taking prescriptions but when I have constant pain I know it is needed. Just feeling very frustrated right now.
 
Thanks Kit. It is so hard to know what to take and what to avoid. I am not big on taking prescriptions but when I have constant pain I know it is needed. Just feeling very frustrated right now.
Your welcome. I don't like to take much medication either, but I have had to readjust my thinking with my Crohn's. I know that if I don't take medication that inflammation and damage will occur in the colon. It is a new way of thinking with Crohn's. I have been lucky I don't get much pain, but to function you have to keep the pain under control. Whether that be with medicine to reduce inflammation and damage or pain meds. Keep open communication with your physician and hopefully you can find a plan that helps!
 
I've been on cimzia for almost a year now. My crohns is doing fairly well - it's been months since I've missed work due to Crohns issues (knock on wood!!) I have been on other biologics (Remicade and Humira) but became resistant and/or developed antibodies and became allergic. I'm worried same is happening with Cimzia now. A few months ago I noticed a full body reaction after my injection: hot, fatigued, weak, dizzy and I took a Benadryl and went to bed. Woke up feeling great and didn't experience it the following months. Last night I did my injections and went to bed, fell right to sleep. I woke this morning feeling like I've been beat up or ran over. I'm so weak and exhausted. It's such an effort to hold my tablet and type. I thought it would get better if I got up and moved around. I took my dogs for a walk and had to sit down as soon as I got in. Maybe I'm coming down with more than the cold I've had this week and timing is coincidence... I'm not finding much about others experiencing the same. Any input or similar experiences?
 
@Mandalee I have been on Cimzia for over 5 years and have never had a reaction like that. I am sometimes more fatigued the next day, but it is manageable. Fatigue is my biggest issue most of the time anyway. Sorry not much help. I would make sure your physician knows about this and maybe talk to the pharmacist.
 
I was on Cimzia several years ago. It was good fior a while. Them, it failed. After that, I built up an allergy to Remicade. I am currently on Stelara. They found active Crohn's in December and I have a suspicion that I will be switched to another biologic after my visit with the specialist. Since it HSS been a while since being on Cimzia, is it possible to go back on it?
 
@Ron If i am correct with Biologics once you have been on one and have stopped you cannot go back to using that specific one. It will no longer be effective. Entyvio is a new biologic that one of my friends is on. I hope this helps.
 
Just to be safe I've been taking a benadryl before my cimzia each time and take it shortly before bed then sleep in the next day. A lot of the times I just take an easy day after my cimzia. Like watch movies in bed and whatnot. It's what I did after my remicade each time and they are similar like meds so figured why not with this too. This time of year there is so much junk going around that I'd rather stay away from people when I'm more immuno compromised. I'm also a little paranoid because I had cdiff for so long. And that was all caused from being immunosuppressed
 
Hi guys! I just started Cimzia last week, and had the worst headache ever for 2 days afterward. Since then, I have dizzy spells and feel like I can't think, not to mention fatigue. I have to take two more shots next week and am dreading it already. My doctor never really takes side effects seriously...I am starting to think these meds are just not for me.:pale:
 
Some of my side effects lessened or went away after some time. But if your doctor isn't listening to you, look for a different doctor. He/she works for you.
 
I have been through quite a few GI's, not my favorite doctors all in all. Thanks for the advice, I will try to stick with it :)
 
@momofzach I was lucky I didn't have any really noticeable side effects when I started taking Cimzia. I sometimes am more tired the next day after my shot, but I have problems with fatigue anyway. You can always call the specialty pharmacy you get the medication from and speak to the pharmacist and get their opinion. They can be very helpful.
 
@momofzach also check out the Crohn's and Colitis Foundation of America. They can be a wealth of information and help. The also have a physician finder.
 
Update...I made it through the loading doses, and each time the side effects were less than the time before. It seems to be working already, better than the Humira did. Glad I stuck it out, I hope this helps someone else who is dealing with side effects :)
 
I was diagnosed in 2004 and remicade worked pretty well for 11 years, along with some oral meds. I had common complications of arthritis, anemia and eye issues. After I developed antibodies, I had to go on some trial and errors until getting on cimzia in summer of 2015. Since 2012, I've developed a few incidents of basal cell skin cancer, along with other skin issues.
After being on cimzia just knew year, I've been diagnosed with melanoma, found in my leg. Fortunately we caught it early, but I am convinced that the biologics caused it. Yes; I've spent a lot of time in sun/water/water sports, but I use sunscreen.
Now I'm faced with getting a chunk cut out of my leg, and can't help but wonder if I should continue on cimzia and be faced with more bouts of melanoma:(
I've heard that entyvio does not lower one's immune system, but I'm not sure that's completely accurate. Also, entyvio is newer, and has a scary, although unlikely possibility of PML, a deadly brain infection.

Biologics AND delzicol + imuran keeps it 'usually' under control, but the other issues, such as awful arthritis, is more than trying. If I give up any of these, I feel strongly I will be unable to work and/or lose my colon. At the same time, I don't want more cancer. Do any of you have similar experiences and advice on switching biologics?
I've also tried humira but that did not work for me.
 
@Lisat --- your post is very interesting. I have been on Cimzia for 7 years with good results in keeping my Crohn's in remission except for fatigue. In the last couple years I have encountered more skin issues as well. I had one spot that was precancerous and seems to be not an issue now and one spot I am getting a biopsy of in December. I was told by my gastroenterologist that Cimzia (not sure if all biologics) can increase your chance of getting skin cancer. I would talk to your Gastro and see what are the benefits/risks/options on continuing or changing medicines. I now get yearly visual body scans by my dermatologist to catch cancers/problems early. I hope this helps some. I hope the melanoma goes in remission and this is the only time you have to deal with it.
 
I see a dermatologist every year as well. I've been off Cimzia since April (had a bowel resection in May) but I have more skin issues now too. Skin tags mostly which I've never had before.

Lisa I hope things improve for you. This disease isn't fun.
 
I'm moving on to a different pasture and going on Humira next week. Thanks for the support all you Cimzia folks. You've been a huge help over the last few years.
 
I hope Humira works well for you! A lot of my friends on going on Entyvio, so keep that in the back of your mind too. remission here we come!
 
Data point:

Just got out after 3 nights in the hospital with an obstruction. It looks like after 5 years (nearly to the day) Cimzia has lost its effectiveness for me.

It was a good run!
 
I'll hopefully be starting cimzia in the next few weeks.

Can anyone give me any info on it?? How long before you saw a difference in symptoms? Any side effects I should be on the look out for?
 
@Crixpix I have been on Cimzia for quite a while. It takes a couple months, if I remember correctly, to start seeing a difference. As side effects, that is a hard one. Sometimes I get new things going on, are they from Cimzia, Crohn's or just aging. Not really sure. I will tell you that I heard you have a higher chance to get skin cancer, so stay protected. I will say I have not had a side effect I can specifically say it is because of the Cimzia. I hope Cimzia does well for you. Check out Cimplicity from UCB. Your dr should have signed you up for it.
 
Top