Cimzia Club Support Group

Crohn's Disease Forum

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Lately I have taken a good look at what doctors listen and to those who are just writing RX. I found my PCP is willing to write scripts that I used to get from other specialists when nothing is changing. So I am finally down to 4 doctors and as you know keeping any number of docs on the same page is hard. So I have a PCP, Rheumatologist, Liver/Hepatic doc, and Cardiologist. Between the four of them, they have done a super job but it took alot on my part to get them on the same page. The new patient portal helps too.
 
We could almost be twins :( minus the cardiologist plus dermatologist and an ent that refuses to let me go because he swears I have wegener's....which I don't because I would be dead by now. Unfortunately I have a range of autoimmune diseases on both sides of my family (of which I have none of the same) that apparently have triggered horrible responses in my body. Sometimes you just get a bad hand of cards but you have to keep on playing :)
 
I've been on cimzia for over a year and a half. Initially I was taking the 400mg dose every 4 weeks but found it didn't last even close to 4 weeks. My GI had me go to 200mg every two weeks instead which seems to help and I actually felt good for the first time in a couple years. Sadly, it didn't last though. I started a pretty bad flare and been feeling pretty badly since last November. My GI started me on Azathioprone in May along with the Cimzia and I really started to feel pretty ok again until....my liver enzymes started and have continued to escalate even when lowering the Aza dosage every 2 weeks. I've since changed GIs and she wanted to do a new colonoscopy which all the biopsies of ileum, terminal ileum and repair site from previous bowel resections shows active crohns. So now the new GI has doubled my cimzia dose. I now take 400 mg every two weeks. I have had two double doses so far and feel no different except more fatigued and some nausea.
Has anyone else had to go to this higher dose? And how long before knowing it was going to help.? I'm very discouraged that I can't take enough Aza (and potentially none at all if the blood work continues to be bad) because of the liver thing since it did seem to be working.
I'd appreciate any comments.
-Sara
 
It may simply be time to consider a new biologic, I'm assuming you've been on Remicade and Humira? If so, Entyvio seems like the next natural drug to experiment with.
 
Yes Orchid. I had liver failure with remicade and Humira I have anaphlysis. Right now I am going through the hoops of getting it approved which my GI guy said he sees no problems.
 
Hello all, I am new to Cimzia, Had my 3 loading doses, i actually started to flare the day my 3rd one was due, and the flare didnt get better, so i started on prednisone. I have read that it can take 3-4 months for cimzia to put you in remission. I am doing well (health wise) on the cimzia, i could not tolerate the Remicade. I have uc, and nothing else has worked. i am going to ask my doc about one injection every 2 weeks. hopefully i can get off of the pred in a month or so and find myself in remission! :)
 
Orchid said:
It may simply be time to consider a new biologic, I'm assuming you've been on Remicade and Humira? If so, Entyvio seems like the next natural drug to experiment with.
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My original GI had me skip remicade altogether but I tried Humira which did nothing that's when I started cimzia. I'll give cimzia a few more tries and then see if I can qualify to start entyvio. I had been reading about it and understand it's newly FDA approved. Hope that it might be different enough to finally work.

Having said that, has me wondering. Do u think remicade is still a viable choice having tried both Humira and cimzia?
 
@Sarata I hope you get some relief, but I am kind of agreeing with Orchid and you may have to try a new biologic.
@hummingbird Cimzia does take a little while to work. Be patient and I hope you go in remission.
 
I have been on Cimizia but I am the reactive queen. I didn't get through two doses of it. But as Kit said I have seen folks who have gotten relief fairly quickly and others it took time. Don't be afraid of moving along to another biologic. My feeling is if that one didn't work another may and perhaps in the future you can come back to it depending on what phase you Crohn's is at. Hang in there.
 
Autoimmune queen...how did your first dose go? I hope it went well. I had my colonoscopy yesterday for evaluation for the new drug. Crossing my fingers and toes...
 
goofyrn2 said:
Autoimmune queen...how did your first dose go? I hope it went well. I had my colonoscopy yesterday for evaluation for the new drug. Crossing my fingers and toes...
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It was fine. I was nervous for nothing really. It stung a little , but that's it. Today I can only tell where one of the shots went in. I am not tired this morning either, I am not sure I feel any difference but I don't feel bad because of the shots so that's awesome :) good luck on getting approved for the new meds.
 
So I was doing pretty well side effect wise with cimzia. Nothing too crazy, only one medicine I can't take with it. So I went to my son's soccer game. It's unseasonably cold ( fall is early ), no sun and when the sun came out it felt like someone was holding me under a magnifying glass, like my skin was catching fire. It actually hurt for the sun to hit my skin. I was just wondering if anyone else has had this happen?
 
4 days. It was just weird. I had read all of the other stuff that could happen but completely missed that. I guess I will just travel with an umbrella :)
 
autoimmune queen said:
4 days. It was just weird. I had read all of the other stuff that could happen but completely missed that. I guess I will just travel with an umbrella :)
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Wow I had no idea it could do that to you. Makes you wonder if any other of the drugs in this class do this as well. How are you doing otherwise?
Had my colonoscopy for the approval of the drug Entyvio. I see the doc on October 1st so I guess I will see what the scoop is. I can tell being off the methotrexate now my gut is at a bit of unrest. The methotrexate was making me so sick for two days a week I just couldn't stand it. Two days every week for a treatment that is supposed to make you feel better just wasn't cutting it.
Take care.
 
I am ok. A little more energy, no big changes any where else. I sure hope you get approved for the new meds. Some of the meds can be really hard to tolerate. Good luck :)
 
Just started the pre-Cimzia testing.
Remicade was great, but after being on it over 10 years it had run its course. Humira did not work as good but was ok. Then I developed depression from it, which lifted 1 week after my last dose in March. Unfortunately the fistulas are going CRAZY so now on to Cimzia.
 
I hope the Cimzia works well for you Mish. Just give it time. It took a few months for it to really start making a difference for me and it gets better now with each passing month.
 
So cimzia so far is not doing anything but I'm only going into my 6th week, however I just had blood work done and my liver is not looking so hot. I was just wondering if anyone else has had trouble with their liver.
 
It's been a while since I gave an update so here we go...

I've been on Cimzia 200mg injections every four weeks since April. It took quite a while for it to start reducing inflammation (two-to-three months) and it has seemed to improve with every injection.

Now I'm distended and have been for about 10 days. Had my shots last Friday. Saw my GI last month and he mentioned the option of getting a booster shot of Cimzia if I need it. I believe I will take him up on that offer. I'm sure my distended stomach will go down in the next few days but I shouldn't be distended for this long.

Overall I'm still a believer in this medication but a booster dose may be for me.

I've been eating hamburger and pork too, which I never would have done six months ago. Obviously I don't eat those things when distended.

Hope the rest of you are doing well.
 
Great to hear from you SCCrohnie. It looks like you are moving along quite nicely. Hurrah.

I have started a new drug Entyvio. I had my first injection on Tuesday. One of the side effects is fatgue and I can attest to that. At least now I don't suffer with the methotexate nausea and vomiting I had. I just could give two days a week to this. I did it for so long and just gave up and it started to give up on me as well. This is a new drug (I failed on so many of the TNF drugs like Cimzia) that I am praying it gives me some relief from the Crohn's symptoms. I don't expect allot from the first infusion but we will see.

But I am so happy you are feeling better. Cimzia didn't work for me at all.
 
Wanted to just drop in on this thread and let everyone here know how it's going.

After failing Cimzia earlier this summer (never even saw a response) and having a couple months of no meds. apart from prednisone to hold things in place I started on Entyvio and finished my 3rd infusion yesterday. I've been seeing fantastic results - better then any other treatment option we've tried, and felt a response within the first infusion - although that seems rare both on the Entyvio forum and according to the nurses at the infusion clinic. Real test is in November when GI Dr. does a scope, but I have a feeling it'll be in line and my gut will show decreased signs of inflammation, ulcers, etc.

Like Goofyrn mentioned fatigue has seemed to be a side effect of Entyvio - but as of this last infusion I've noticed it's not as pronounced as after the first 2. Only other side effect was a burning/ fiery sensation in the gut in the days leading up to each infusion, but that too seems less pronounced each time around.

I've been able to start a strength/ weight training program and am up 7 lbs. in almost 4 weeks - hitting my 2lbs/ week goal. I feel HUNGRY - which wasn't happening even on 40 mg. of pred. and speaking of prednisone - been able to start tapering and so far haven't noticed any adverse effects from lowering the dose. Currently on 20 mg - lowest dose in a year. Gut pain is almost non-existent now, where up until the 2nd infusion it was enough to pass/ knock me out on a bad evening/ night.

Hope all has been going well for everyone who's sticking with Cimzia and this post gives a bit of insight into Entyvio for those needing/ looking at other options.
 
I am so glad there is another drug that seems to have some promise! Cimzia is still doing well for me. My last colonoscopy looked good, no inflammation, just area of healed inflammation!! Yay!! Have been on Cimzia since August 2009 with fistulas and abscess in the middle and finally a colectomy. I have been symptom free since Feb 2012 surgery with Cimzia! Sending healing thoughts to all who continue to seek relief from symptoms.
 
The first infusion was a bit strange. I could feel tingling as the infusion went it. I have a port so that may be the reason. It started in my chest, then arms, and down to my legs. But other than that no other symptoms. Then, fatigue set in. I understand that is not uncommon. It kept me napping and resting about four days and then began to subside. Now I don't know if I am just having Crohns symptoms or the med was shaking things up a bit. I have had some really mean pain, allot of gas, and continue the liquid stools. I have had to take more pain medication than I would like because that makes me sleepy as well. That being said, it was only the first injection and hopefully the symptoms are the drug doing its job. Thanks so much for asking SCCrohnie. How are you doing as well?
 
I hope things improve for you quickly! Sorry you've been having pain.

I'm losing ground with Cimzia. Distended and have vomited a couple of times now. I see my GI in a couple of weeks so I'll see what he says then.
 
I am so sorry to hear that. I have failed on so many drugs I am prepared to just live with how things are but it is tough. Cimzia gave me hives and many of the TNF drugs did that to me. Do you think you can wait that long to see him? Maybe you can mention the drug I am on and see if it works for you. Hugs your way.
 
Hi Linda,

I had a stiff muscle in my leg or my neck after the first couple of loading doses and seems I'm more susceptible to getting sick but other than that I haven't had any side effects.

The stiff muscle thing went away.
 
SCCrohnie said:
Hi Linda,

I had a stiff muscle in my leg or my neck after the first couple of loading doses and seems I'm more susceptible to getting sick but other than that I haven't had any side effects.

The stiff muscle thing went away.
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Thank you, I am somewhat nervous about fatigue with the holidays coming soon. Also, I am curious about hair loss. From what I am reading, this can be a side effect also.
 
Hi Linda,

I have fatigue, but I think I had some of that before Cimzia. I have had hair loss at times, but again i think that was due to anesthesia in my system. I am good now. I do take a Hair, skin and nails supplement. I also seem to be prone to skin infections, but I don't seem to get sick very often. I would say no major side effects that I can directly link to Cimzia.
 
countrycoffeehouse said:
I did the start up shots then we lost our insurance and I have to stop when I was due for my 4th shot... hence the crazy flare I am in right now.. I hope to have insurance soon so I can restart it..hope that is an option
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I've gotten it free from the drug company when I had no insurance, but it was many years ago. I needed Cimzia & my ins fought & ended up getting my 19th surgery cause of it. My surgery was in August, had lots of complications & got 2 fistulas that were draining into an abscess, finally started Cimzia again & fistulas disappeared. So hope this gives you some hope & can get the meds you need
 
Starting my injections of Cimzia Wednesday January 14th! Hoping all goes well after an anaphylactic reaction to Humira. I will be receiving the medication at no cost as long as I have the injections in my physician's office.
 
Hey Linda, don't forget about the Cimzia card you can get on their website. They pay to have a nurse come to my house & give me injections + pay all my insurance co-pay.
 
Thank you for all the support. I went yesterday to have my starter dose of Cimizia. Landed myself in the ER again. I think the next step will be to try Entyvio next. Anyone that wants to share how Entyvio is working for them will be greatly appreciated.
 
This is my first post on the forum. I wish I had found this resource years ago. I am in the loading phase with Cimzia. I've received the injections for week zero, week 2, and will complete the loading phase this Thursday. I have experienced a mild rash at the injection sites. My main problem is that I am still experiencing relapse type symptoms (bloating, pain, upset stomach). I am sticking with it because my doctor said it may take time for it to start working. I know there is probably not an answer, but how long does it take on average before you know if it will provide positive benefit?

A little history with my CD, I was doing well a few years ago with a maintenance therapy of Pentasa. My CD is in the sigmoid colon. My insurance removed Pentasa from their "list" and I shifted to alternative therapy (VSL#3, Flax Oil, L-Glutamine, Cucumin, Forvia Multivitamin, Fennel tea to combat bloating). I lasted a year without meds and have been on a roller coaster ever since. I use prednisone and uceris to combat flares but simply hate being on those. I had one episode of bacterial overgrowth and used a new antibiotic called Xifaxin which was so much better than flagyl. I was also on Remicade for about 8 years after my initial diagnosis in 2002 but developed an allergic reaction to it.

Anyway, I've probably said too much. I'm giving Cimzia a shot and trying to stay positive. I am a school teacher and it is really becoming a struggle. I am an excellent teacher when I feel well but it is impossible when I am in a flare. I simply want to sleep all the time.

Thanks for listening. It helps just writing this down.
 
Welcome BlueAvenger!

My story is similar to yours in some ways. Was on Remicade for seven years, went off it then started Cimzia last April.

It really took a good three months before I started seeing good improvement with Cimzia. I've gained about 30 pounds since April. Whereas I was vomiting every couple of weeks before Cimzia, I've vomited maybe three times total since and none in the last four months.

Be patient. I know it's tough with the bloating and pain but I ate a lot of pudding and rice for a long time to help keep things moving on the inside. Now I can eat more things and if the medicine works for you, you will be able to as well!
 
Hello All!
I'll be starting Cimzia in about a week and I'm a little nervous! I've been on Remicade since April and it's worked wonderfully to treat my Crohn's. I'm switching meds due to the side effects of migraines and joint pain from the Remicade. I'm not liking the idea of giving myself an injection, but I like how I can choose what day to do it.

I'm curious to know how people feel after getting the injection. The day after the Remicade infusion was always awful for me - a lot of pain, extremely weak and fatigued. I'd have to take the day off from work. I also read that a side effect of the drug is weight gain. I didn't know if that's a very common side effect. I'm in the process of losing 50lbs of Prednisone weight and I'd like to continue to be successful with that.

Any insight would be helpful for me! Thanks! :)
 
I have been on Cimzia for over 3 years. I will be tired the next day, but then again I tend to be more fatigued the week before the injection too. I haven't had any other reactions after the injection. I do get a white circle on my skin around the injections site for a few days after, but no pain (maybe some tenderness at times). Make sure you check into having a nurse come out to show you how to do the injections before you try it on your own. I hope Cimzia does really well for you. Make sure you look into the co-pay assistance they offer.
 
Kit said:
I have been on Cimzia for over 3 years. I will be tired the next day, but then again I tend to be more fatigued the week before the injection too. I haven't had any other reactions after the injection. I do get a white circle on my skin around the injections site for a few days after, but no pain (maybe some tenderness at times). Make sure you check into having a nurse come out to show you how to do the injections before you try it on your own. I hope Cimzia does really well for you. Make sure you look into the co-pay assistance they offer.
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I'm waiting for my kit to come in the mail and when it does I need to call my GI's office to set up an appointment with a nurse. I have no idea how much the co pay is or if I even have one. All I know is my insurance approved it. I have very good health insurance! I just hope my GI issues are fine... Remicade really helped to get it all under control.
 
For me, Remicade worked better than Cimzia but the Cimzia is passable. I continue to take it and have since April.

Sometimes I'm fatigued the day after the shots. Sometimes not. Sometimes I have leg and joint (and toe!) pain a few days afterwards. Sometimes not.

It took a couple of months before I noticed any positive change in terms of seeing the Crohn's inflammation decrease. Patience is key.

I usually have a nurse give my injections but I've done it myself once. It's easy.

Hope your journey with Cimzia is great!
 
Alley2231 said:
I'm waiting for my kit to come in the mail and when it does I need to call my GI's office to set up an appointment with a nurse. I have no idea how much the co pay is or if I even have one. All I know is my insurance approved it. I have very good health insurance! I just hope my GI issues are fine... Remicade really helped to get it all under control.
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Just to let you know the co-pay assistance really helps. It is a very expensive medicine and my co-pay would be $375 for 3 months. It is a $0 co-pay card. Here is the link:
http://www.cimzia.com/crohns-disease/crohns-disease-patient-support.

I hope all goes well!
 
I have not read each post on here, so please forgive me if the subject has already been brought up. I have been on so many meds for my Crohn's disease. They either stop working or my body rejects them. I have almost died from septic poisoning, had surgery to remove part of small intestine, colon and appendix due to disease spreading in there, and surgery to drain abscess. I was on remicade and kept getting scary reactions during fusion. My dr tested me for antibodies and my count was so high. He wants to try me on Cimzia for my options are running out. I am concerned that I will have the same reaction to Cimzia as I did with Remicade and my body rejecting it. I had yucky side effects from Remicade and concerned with side effects with Cizmia. I have been out of remission for 3 1/2 yrs. I am wore out physically and emotionally at this point. I also have nerve damage from losing a disc in my back from all the steroid us over years with disease. I had disc replacement surgery that was a blessing for I have zero back pain but left with nerve damage from disc being gone for period of time. The meds for Crohn's can cause more pain to my nerve damage. I cannot go without med for Crohn's , nor can I take side effects from meds anymore. I am a single mom and have children to raise. Any info will be most appreciated and insight on this drug.
 
Hey Storie,

I took Remicade for seven years until I started getting panic attacks and assumed it was the cause. A couple of years later the Crohn's was back with a major vengeance.

I've been on Cimzia since last April. Aside from some pain in my legs and toes (or a stiff muscle somewhere - my neck or my calf) it's been a pretty side-effect-free experience.

Whereas Remicade was a wonder drug for me, Cimzia doesn't work as well for me and I have to watch what I eat. But that could be due to strictures I could have in the small bowel. Cimzia also took about two months before I saw any noticeable effects, so be patient.

You are a trooper! This disease is terrible and sounds like you have really suffered. We're all here to answer your questions and talk through how you're feeling.

The needle is pretty small for Cimzia but the liquid is thick so it may be easier to inject it slowly. Hurts less. But from reading the Humira posts, Cimzia sounds easy compared to its injections! :)
 
Kit said:
Just to let you know the co-pay assistance really helps. It is a very expensive medicine and my co-pay would be $375 for 3 months. It is a $0 co-pay card. Here is the link:
http://www.cimzia.com/crohns-disease/crohns-disease-patient-support.

I hope all goes well!
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Thanks so much! The nurse gave me that information when I went in on Friday for my first injections! My co-pay is going to be $30, which is manageable for me right now.

I had some extreme lightheadedness, nausea and hot flashes after giving myself the first syringe, but it subsided after 15 mins. The second one was much better. To be safe though, they want me to come back in the office for the next dose at 2 weeks, to make sure it doesn't happen again. I felt phenomenal the following morning....got up and went to a very high cardio Zumba class! That never would have happened the day after my Remicade infusion!
 
Hi Storie,

I haven't had much reactions Crohn's meds except for Imuran! Prays for remission and no side effects with Cimzia. Keep watching Crohn's news. New meds continue to come out. We are here for you.
 
Hey all!
So I've been on Cimzia for a tad bit longer than a month, I just administered my last starter dose last week. I was curious to know if anyone has ever had issues with memory loss, since being on Cimzia?

Memory loss is something that I've noticed since starting this medication. First it was just forgetting things that happened earlier in the week, then the day before, then forgetting things the same day. It's concerning, because the things of importance that I'm forgetting have to do with work and I don't want to come across as a scatterbrain or irresponsible to my co-workers.

I would appreciate any input! :)
 
Hi Alley,

Maybe a couple of days of slight brain fog for me but not always. Never really bothered me enough to note it as a side effect.
 
Hi Alley,
Hang in there! I've been on Cimzia for 2 years or more. Never really had any issues with it.
I think my head swam a bit during initial doses and maybe some day after tiredness, but that was about it. I still have occasional, short lived flares but all is good. Cant remember last time i had ileum pain, which is where my ulcer is or was.
Btw, whether you inject in stomach or thigh, ice it first...no pain.
Good luck...Cimzia works for me. Flagyl put me in the hospital 3 times with pancreatitis. Wont touch that stuff again!!!
 
Fyi,
Pharmacy sent Cimzia on Wednesday. Weather delayed delivery until Monday. 8 Phonecalls later, I got new shipment sent (free). Ice pack temp was 65*, pharmacy said it was still ok. Called Cimzia, they called pharmacy and told them to refill the order. VERY DANGEROUS if not good. Cimzia said limit is 77* +/- 3.6* in 24 hr time frame..not during shipping!! If EVER in question...call Cimzia
 
Hi Alley,

I agree with SCCrohnie. Tired for a couple days after and I do get fatigued easily which makes my brain shut off for a while, but I noticed lately it is worse before I am suppose to have the injection and then after a few days I am better. I am not sure if that is Cimzia or just the immune system responses. I do write things down a lot I need to remember. I hope this helps a little, and I agree hang in for a while and see what happens especially if it is working!
 
Thanks guys!!
I haven't noticed it as much this last week, so I wonder if it's something that will bother me for a week or so after the injection. I don't really have any issues with injecting the needle. I actually asked my doctor about icing the area before injecting and I was told that it could affect how my body absorbs the medicine, so I'm not going to be using ice.
I also do not intend to inject in my belly, at least for now. When I was very sick and in excruciating pain, they wanted to put some injections in my belly when I was in the hospital and I refused. I do still have belly pain daily, so I don't want to deal with it even more so! I'm not having any problems with tiredness. I actually feel pretty awesome the day after my injection, which was the complete opposite for me on Remicade.
 
I take my 2nd loading dose tomorrow. After my first dose, I got sick(throat infection). I am crossing my finger that everything goes better! The dr has me on antibiotics to see if that helps ward off infection.
 
I've had to delay my shots before due to illness. Hope your second dose goes well and you don't get sick afterwards!
 
I as well have had to delay shots due to infections. I think that is common. Hopefully cantthinkstr8t you don't get another infection this time. I am pretty diligent about washing my hands a lot.
 
I took my 2nd dose last night-I am so TIRED!!

I was upset that work won't let me come in the day after my injection(dr said I had to wear a mask), but now I am somewhat thankful. The thought of being on my feet all day just does not appeal to me.
 
I am normally tired the day after my injection as well. It gets better for me as the week goes on. Hang in there!
 
Hi everyone- I have been away from the Forum for awhile- been really sick.
Started Cimzia last summer- then got Shingles- had it three months- went off all meds- been a horrible 7 months.. getting ready to load up on Cimzia on April 22-feeling anzios:dusty:
 
Hi Noonie! I hope that Cimzia helps to put you in remission and you stay healthy!
 
I've officially been on Cimzia for a year now and for the first time made it a full four weeks without symptoms! But it takes about five days for the medicine to kick in, so two days after my shot my symptoms started coming back. It's still good news though! It's lasting longer!

I still haven't had a steak and I won't. Still not confident it would pass without a major effort and pain. But chicken, turkey and hamburger are handled pretty well if I don't overeat.

I think for me it's a combination of diet and medication for the foreseeable future. But if I still feel as good four weeks from now as I did two days ago, I can live with that for the time-being.

Hey Noonie - how did your injections go?
 
Good News SCCrohnie! I just don't eat red meat at all. Every once in a while lamb or pork, but not often. I just learned that red meat isn't good for our symptoms anyway.

I hope all is going well for you Noonie!
 
Darnit anyway!!!

Thanks for your replies and good wishes..So kind! I was un-able to start the Cimzia due to Cellulitis!!! :hallo3:
I contacted it somehow in my fingers, for heaven sakes!!! No idea how.. it got in all my fingers around my cuticles.. maybe from gardening as the weather has been so nice. Talk about sore!~ Could not do a thing with my hands. My finger swelled like sausages.. was crazy!
PLUS I got chronic bronchitis...when it rains it pours.

I had a horrible flare and was hospitalized a few days.. yuck: back on Imuran...400mg and now on: Bactrim SS 400-+80Mg...Topamax 150 mg, back on Prednisone...60mg, Vitamin D 50K, Flexeril 20mg...Oxycodone 10Mg every 4 hours< I hate that>...Esomeprazole Mag Dr 40 mg...Tylenol...Multi Organic Vitamin, Curcumin Caps, Potassium Gluconate caps 595 mg, Magsnsium Caps 250... Tart Cherry Caps 1100 mg...Aciddophiludus-Bifidum (chewble) and Melatonin at night. I feel like a walking pharmacy store. lol

Will keep you posted as when I get to start.. I sure hope you all are doing well!
 
SCCrohnie said:
I've officially been on Cimzia for a year now and for the first time made it a full four weeks without symptoms! But it takes about five days for the medicine to kick in, so two days after my shot my symptoms started coming back. It's still good news though! It's lasting longer!

I still haven't had a steak and I won't. Still not confident it would pass without a major effort and pain. But chicken, turkey and hamburger are handled pretty well if I don't overeat.

I think for me it's a combination of diet and medication for the foreseeable future. But if I still feel as good four weeks from now as I did two days ago, I can live with that for the time-being.

Hey Noonie - how did your injections go?
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So happy to hear you are doing well on the Cimzia! I sure did when I was able to! I did get a Shingles shot so when this Cellulitis clears up in my hands I look forward to starting again! Thanks for asking and BIG hugs to you and Congrats! I do not eat much red meat either and pretty much stick to the the low FODMAP diet. It seems to work for me! :rosette1:
 
Kit said:
Good News SCCrohnie! I just don't eat red meat at all. Every once in a while lamb or pork, but not often. I just learned that red meat isn't good for our symptoms anyway.

I hope all is going well for you Noonie!
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Thanks- things have been a little rough.. but I foresee light at the end of the tunnel! hehe.. I don't eat much red meat either- I feel better without it.
:)
 
Hi everyone!
So I started Cimzia in January and I haven't had any relief yet. Right now I'm in a lot of pain - my doctor likes to tell me it's IBS. :mad2: My CRP has gone up since being on Cimzia. Should I stick it out, or try and get my doctor to try something else?
 
Well If I were you I would talk to your doc and try something different. Seems like plenty of time for the Cimzia to have kicked in. Sorry to hear you are still in so much pain. There are plenty of other meds and treatments out there that should help you. Sometimes it takes a while to find the right concoction to work. We are all so different. I have tried most of them, and Cimzia seems to work for me. Good luck!!!!!:rosette1:
 
Luthien said:
Hi everyone!
So I started Cimzia in January and I haven't had any relief yet. Right now I'm in a lot of pain - my doctor likes to tell me it's IBS. :mad2: My CRP has gone up since being on Cimzia. Should I stick it out, or try and get my doctor to try something else?
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Not sure what to tell you, but I would make sure you have tried 3-4 full months before giving up. Use a symptom tracker so you can give good information to your physician. I have attached a simple one. The other one I really like is the Short Inflammatory Bowel Disease Questionnaire. I couldn't find one quickly online. I hope this helps. I think tracking our disease helps the physician see a better picture.

Good Luck1
 

Attachments

  • CD_tracker.pdf
    1.6 MB
Oh and Luthien you can have IBD and IBS. I learned that recently, but not sure how they tell the difference if they just look at symptoms!
 
Just a couple of weeks after posting that my meds are working longer, my last shots seemingly never took effect and I'm distended and going to vomit at some point tonight. I feel almost like I did before I started taking the drug.

It's amazing to me how quickly Crohn's can ravage one's body.
 
so sorry SCCrohnie! I hope you fell better later. Just a piece of information, even though you feel better, still watch what you eat. Stay with foods that you know are less likely to irritate you. Also it normally take a few days for my shots to make me feel better. Hang in there1
 
Thanks Kit. My shots ended up taking effect this week, so things have calmed down considerably. I'll never figure out this disease.... :)
 
SCCrohnie said:
Thanks Kit. My shots ended up taking effect this week, so things have calmed down considerably. I'll never figure out this disease.... :)
Click to expand...

And you probably won't. It seems like something always changes and then I need to adjust my eating, routine etc. Take it day by day! We are here to support you!
 
Luthien said:
Hi everyone!
So I started Cimzia in January and I haven't had any relief yet. Right now I'm in a lot of pain - my doctor likes to tell me it's IBS. :mad2: My CRP has gone up since being on Cimzia. Should I stick it out, or try and get my doctor to try something else?
Click to expand...

it took 6 months for me to notice any difference with cimzia, but once i did (as far as crohn's) it was great. wonderful not to have diarrhea and pain all of the time. however it stops working for me about 3 days before my next shot, so I now do prednisone bursts every month and it helps alot. so hang in there. my liver enzymes went through the roof right after starting, but they went down after a couple months. good luck
 
Hello!
I recently started Cimzia two weeks ago. This upcoming Saturday will be my 2nd loading dose. So far, so good. I had done Imuron and Pentasa years ago and while it helped it also made me very sick. After many years without medication and having had a bowel resection 2 years ago I decided it was time to quit screwing around and take charge of my Crohn's.
These forums are informative and I hope that my experience can (combined with everyone else's experiences) be helpful.
 
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Thanks for the CDtracker, Kit!
I went to my doctor and they put me on prednisone and then had me do a Cimzia booster shot. Now I'm just waiting it out until I wean off the steroids and find out if it is working or if I need to switch to another drug.
 
@Luthien I hope all goes well! Finding the right combination of medications can be difficult and then they could stop working! :-(
 
I have been taking Cimzia for over a year and been diagnosed with Crohn's two years now after having a severe flare. The last week I have been having pain and bloating. I took my Cimzia injections on Thursday and today the pain seems to have subsided so I have my fingers crossed. I have allergies and the tree and grass pollens are very high where I live so I have been taking my regular dose of Zyrtec and then Benedryl just to make it through the allergy season. Has anyone heard of allergies or allergy medicine causing your Crohn's to act up?
 
Crohn's is an autoimmune disease and stress can make you flare. Allergies are stressful for your body. It's all one system. Hope you feel better.
 
Thank you Autoimmune Queen. I am still trying to navigate through learning my body and have made a lot of changes to my diet and stress level in the past two years but allergies is a hard one to avoid when you live in the grass growing capital of the US. I have a call into my Doctor but the pain was less today. It rained today and that helps the pollen level too. I am having pain low in my abdomen, I am bloated and I am tired but other than that I'm doing fine. Can anyone tell me the signs of a flare? My doctor has said if I have pain for two or three days to call her immediately, is it just pain that I have to look out for?
 
Jeanine A said:
I have been taking Cimzia for over a year and been diagnosed with Crohn's two years now after having a severe flare. The last week I have been having pain and bloating. I took my Cimzia injections on Thursday and today the pain seems to have subsided so I have my fingers crossed. I have allergies and the tree and grass pollens are very high where I live so I have been taking my regular dose of Zyrtec and then Benedryl just to make it through the allergy season. Has anyone heard of allergies or allergy medicine causing your Crohn's to act up?
Click to expand...

I have allergies too and have been on allergy medicines for a month or more at a time. I have not noticed causing a flare taking allergy medicine or having allergies. Though I do get more fatigued when my allergies/sinuses act up. Allergies are an autoimmune response as well so I agree the whole system is connected.
As for defining a flare each person is probably different in what type of symptoms constitutes a flare, but I would think anything different that lasts for more than 2-3 days should be checked out. I hope this helps. Use a symptom tracker to see how you are changing.
 
Thank you Kit! That symptom tracker is very helpful. I have pretty bad allergies to just about everything in the air. I have taken allergy shots for 20 years and that has helped me be able to go about my life pretty routinely except between Memorial Day and 4th of July when the grass pollen is at high levels and then it is impossible for me to have a life that includes being outside. I take Zyrtec all year round and this has been my life I have always known. With adding Crohn's into my life two years ago I am still trying to navigate this new twist. My first allergy season I was on Predisone and so I breezed through grass pollen season. Last year was a easy grass pollen year for us so I did not have any problems. This year is proving to be different. Thank you for your input as it really helped me get confirmation of what I was thinking. I have made two calls to my Gastroenterologist and she has not returned my call yet. I really don't want to go on Prednisone but I really don't like the other alternative if that is having a flair. We all do the best we can do for that day and that is all we can ask.

Thanks!!
 
I am an ex-Cimzia user. It worked for about 4 years and then it just stopped working. Instead of jumping to another drug in the same class I chose to go on Entyvio. Just wanted anyone thinking of doing the same to let them know that this drug can take up to six months to really kick in. So far I am having positive results. Just wanted to join this forum to share my experience transitioning from Cimzia to Entyvio for those that might be thinking of doing the same.
 
Thats just awful about the bad news and the parasite! I was doing pretty well on remicade for 10 years before I build up antibodies. Sick with the normal symptoms and quite a bit of bleeding. Became tough in February. I used a lot of pred for a while. Insurance co made me try humrira before cimzia. My sickness, food & bathroom issues did improve but the bleeding never stopped. So now I've taken two rounds of cimzia and I see no improvement. The bleeding is worse than ever and so often during the day. I see my dr in a few weeks and just had blood work today. Yes, I'm horribly exhausted but i force myself to exercise and be active. I often don't want to eat, but I make myself eat so I maintain weight.
My crohns related issues include arthritis, vision/cornea issues, skin cancer and other skin problems, aldosterone deficiency, and other 'low levels'.
I am beginning to get very concerned over bleeding so long with no signs of improvement--several months. I believe the norm is to wait 6 weeks to see if the cimzia is helping. I believe it and hurmira did help with other crohns problems. It I can't understand why it's not helping the bleeding if that's due to jnflammation. Inflammation was confirmed in February with blood tests and a colonoscopy. Does anyone know if there could be a related cause of my bleeding? Perhaps my dr just needs to expand his thoughts on this?
 
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!
 

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