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Cimzia Club Support Group

I have been on Cimzia for a year & a half. I have never gone into full remission. I have noticed that my hair falls out but, my biggest problem is that the medication drains me of energy. It is devastating to my lifestyle that I have to push myself hard to leave the house for doctor's appointments, etc. Has anyone else experienced this and ow did you overcome it?
 
3 months on Cimzia with no remission so far. On and off with prednisone and now starting Imuran in conjunction. My energy dips tremendous when the iron levels bottom out. So far been able keep that up with infusions. I'll give this program a few more months and if cramping, bleeding and living on creme of wheat does not change, I guess maybe Remicade will be tried next. Take care and keep the faith.
 
Kathleen, I have always had trouble with energy levels. I normally feel a little better the week after my Cimzia shot, but overall really struggle with energy. I have had problems with hair falling out, but I normally attribute it to other things going on. Now it seems to be doing well. Other than that my intestinal symptoms are doing well with the combination of Cimzia, Asacol, and bowel resection Feb 2012.
I wish I had a suggestion for you on the energy. I struggle with this and finally stopped working. Are you working? The only things medically I can say is check iron, D, and B12 levels. But I am sure your dr keeps up on this.
 
Thanks for replying. I will mention iron, vitamin D and B12 to my doctor. I can't work like this, I can't even keep up on housework. My friends are sick of me cancelling plans and because they can't see my symptoms the just think I'm lazy or don't care. I don't know anymore whether the cure is worse than the disease.
 
I can't work. I have trouble keeping up with housework. I will ask my doctor about iron, vitamin D and B12. This lack of energy has changed my whole life and I'm starting to wonder if the disease might be easier then the cure.
 
I am soo sorry Kathleen. I feel for you! How are your intestinal symptoms? Are you on disability? I have had friends say something to me about getting it, but what would I say? that I can't keep up with my job due to fatigue. Getting ready for work tires me out? I feel lazy, but I want to make sure I take care of myself as well. Sigh I also have trouble keeping up with housework, though my husband still does a lot of it for me. He had been a wonderful, even with me not working. When I was working i stopped going to the grocery store because it tired me out so much unless I went with him. I also didn't do anything during the week and not very often on the weekends and rarely out late. I will admit being tired is much better than having to go to the bathroom a lot, having abscesses and such. Take care Kathleen! Keep me posted,
 
I have been on cimzia for two yrs, I was put on cimzia after Remicade had stopped working for me. I was a mess at that point will spare all the details, but I have found that with cimzia as a part of my regiment it seems to work ok. I changed my injections to one shot every two weeks, and I also do 1 mil methotrexate weekly. Like I said seems to help.
 
I am so glad to hear Cimzia is working for you! It is always nice to have a routine that is good for you. I wish you continued success!
 
Hello! Cimzia has been working really well for me, however, when I picked up my most recent prescription at the pharmacy, I put it in my backpack and took the bus home, then forgot to put the syringes in the refrigerator. They stayed out, unrefrigerated, for six hours in a warm house. When I remembered them, I put them in the fridge and injected a couple of days later. However, unlike in the past, it has worn off after only two weeks and I'm in pain again. I'm waiting for the pharmacy to open so I can call and ask this question, however I'm wondering if that six hours at room temperature could have made the drug less effective. It was not exposed to light and it looked fine when I injected (no cloudiness or particles). Does anyone know?

Many thanks,

Isabelle
 
Isabelle, I'm thinking that is the case. My husband picks mine up at the pharmacy since he works at the hospital, and they insist on giving it to him with an ice pack for the 15 minute drive home, and remind him each time to refrigerate it right away. I'm guessing that the six hours was long enough for the drug to lose some efficacy. However, having said that, Cimzia only holds me for two weeks, so I recently started taking 400mg every two weeks. If it has been working for you for a whole month, hopefully it was just this dose being left out that brought about your symptoms. Please let us know what your pharmacy says!
 
Thanks, myhappyplace. I talked to the pharm and she said that she didn't think six hours would have lessened the efficacy of the Cimzia but she suggested I contact the company to be sure. She said that, like you, I may need injections every two weeks instead of every four. I'm waiting for the doctor on call to call me back…

I see that you are in Rochester…I'm in Ithaca. Do you have a doctor up there who you're happy with?
 
I agree call the company and did you talk to a pharmacist that is familiar with Cimzia? I get mine from a specialty pharmacy that has pharmacists that are familiar with it. Also it always comes in a cooler and I immediately put it in the refrigerator when it gets here.
 
Kathleen, I am recently retired, and I must say if I was still working I would be one hurtin unit. Cimzia after 3 months has helped along with Imuran But mouth sores fatigue episodes makes me think like you. Cure vs Disease. Hang in there.
 
I have read a few posts about the lack of energy while taking Cimzia. I just started with my first dose a few days ago and I had a terrible stomach pain the first day, but that has subsided, also I have been completely fatigued since I started. Today I got my kids up and ready and to the bus at 8:00 AM, got home and went back to sleep until 2:30 when it was time to pick them up. I have no energy. Also, I am taking B-12 shots once a month, which we're giving me lots of energy before I started the Cimzia. Does anyone have any experiences with this? Any advice would help. Thanks!

Jaimie
 
Jaimie: I had similar problems when I started the Cimzia--big fatigue after the injections (but then I was exhausted all the time from Crohn's anyway). It has gotten much, much better and I actually don't feel fatigued after the injections any more and my energy is good. It took some time for me but it's been working very well. Cimzia seems to work slower than Remicade and Humira so you might have a be patient for a few months. I also have to inject 400 mgs every two weeks instead of 400 mgs every four weeks. When my doc made that change it made all the difference. Hang in there!
 
Cimzia fatigue is something I have battled for 6 months. After some blood work, my issue at least partially , was low Saturated Iron. Even though my RBC was ok, an Iron Panel indicated Iron Saturation at 6%. After several Iron Infusions, I do feel better. Not great but some Energy has returned. So, don't be fooled by RBC levels, get an Iron Panel run, and B12. Good luck,, Jamie.
 
Hi all,
I've been on Cimzia about a year now. I noticed some improvement after first few injections but Really noticed how well it was working when i stopped. Job/insurance change. I started having debilitating back pain (ankylosis spondylitis) that completely subsided 3 days after restarting Cimzia. My co-pay was $30. Then went to $200 i never had to pay because the manufacturer applied discount coupons to the scrip. Look into this because my co-pay is now zero. That being said.. .
I just had the pillcam yesterday because of a flare that has lead to significant weght loss. I eat like i am on prednisone :) but am not and still losing weight. Anyway, DX..moderate active Crohns in terminal ileum. Doc is setting me up for every two week injections ($5300/mo) . Guess we'll see what copay does.
I went from 190 to 175 lbs. Sooo, definately look into the Cimcard thing. I think the pharmacy initiated it. I'm chicken too but will try the abdomen shot.
 
Hiya folks. Just a quicky. I was on Cimzia and Imuran with so-so results. Stomach pain flare ups the primary issue. So Remicade is the next round ,staying on the Imuran. My at Univ of Michigan claims this historically has been the best option. Good luck.
 
My insurance just approved my Cimzia today, so I'll be joining you fine folks down this road to what I hope is complete remission. I'm a former Remicade patient which held my Crohn's in check for nine years. I'm hoping for similar results from Cimzia although I'm not looking forward to the injections.
 
I hope you do really well with the injections! They aren't bad once you get used to them. May you go into remission soon.
 
Hi all,
I just had my first two injections today. I have tried Humira - had extreme swelling of the extremities and had to quit, then I was on Remicade and had a severe allergic reaction, and this is my last shot. Any tips on what can help with side effects or effectiveness?? It's been a few hours now and I'm starting to feel very tired. Just keeping my fingers crossed that this works so I can avoid surgery.
 
I have tried most TNF drugs, Entocort, and pills to try and control my Crohn's. Due to severe reactions to latex and extreme reactions to these drugs, (liver failure, serum sickness, hives, swelling, vomiting and etc) I am down to just methotrexate and steroids. I have no idea what we will do next except perhaps hit a few medical centers to see what they offer. I hope this works for you and many others. Its hard to find the right combination of drugs that don't throw your body into a tail spin. Being newly diagnosed with PSC I have come to the conclusion that my immune system is just out of control.
 
Hi everyone, I'm new to the forum and havent introduced myself, mine is a long story. But I wanted to chime in on this thread. I was on Humira for 6 months with no change in my symptoms. (Severe) I am now on Cimzia, I took my first 2 injections 2 weeks ago, 3 days later I became very sick with a sinus infection (11 days on the couch) My GI or my PCP do NOT want to say it was from the injections. I went to my PCP today to find out what I had (Sinusitis) and also had to do the next 2 injections today. I did it, but was leery. I guess we'll see if I get sick or stay sick. I have not had a cold in over 7 years, as bad as this.

Anyhow, Humira was awful, it hurt me so bad I would scream and had to have my bf administer the shot. I am scared to death of needles!! I went on You Tube and found a video on how to do the Cimzia injections, and I loved it! I have no problem giving myself the shots, there is no pain. I squeeze the size of my abdomen insert needle then stop squeezing and slowly push the medicine in. No blood, no burn, no pain. :) In two weeks I will be doing another 2 injections then after that it will just be once a month. I just had my 2nd resection in November of 3 feet of small intestine. 18 years ago they removed 1 foot.

I will post more of my story later... I just want to tell the OP and anyone afraid to start it, that if I can do it (the biggest scaredy cat in the world of needles) that anyone can do it. I suggest doing a search on YouTube and watching the video! It was a great help!

Time to go try to fall asleep... I suffer from Insomnia too. :( Glad I found you all tonight!

Patricia
 
Welcome and thanks for your story! I hope Cimzia gives you much relief. :hug:
 
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I'm all set to have the nurse come out and give me my first loading dose of Cimzia tomorrow. Good thing too. Haven't had solid food in over a week and still flaring bad today.
 
Had my injections. Aside from the initial sting of the shots there was no pain. Let's hope this is the start of a long period of remission.
 
An update: I'm three days after my initial round of shots and I can tell some difference now in the inflammation. It's not completely gone but the gurgling has been reduced as has the pain and pressure I've been experiencing all week with no change in diet.

The only side effects I've noticed are a runny nose (two days now) and a stiffer ankle/leg (ankle one day, leg the following day).
 
Glad to hear you are getting some relief. Yahoo. The runny nose here is definitely pollen. Hope the swelling goes away with more treatments. Thanks for letting us know.
 
I tried my hand at solid foods yesterday and was throwing up at 4 AM this morning. So either the medicine hasn't kicked in completely yet or I have scar tissue preventing the small bowel from opening enough to pass the food. Time will tell.
 
I had my second loading dose yesterday and I'm being cautiously optimistic but I think I'm feeling better. I had tons on energy on Sunday and ate rice, mac & cheese and a baked potato yesterday with little to no pain or bloating. Not ready to try eating meat yet but I do think I'm healing.
 
Hey I recently talked to my doctor and my prednisone isn't working and the pain is getting pretty severe again. He's trying to get me on cimzia. I've read many of your posts and you didn't get in it until you failed humira and remicade. I know I have bad scar tissue in my ilieum which is causing the pain. I just wasn't sure if he's jumping the gun on the cimzia.
 

Orchid

Banned
I actually went on Cimzia as my first biologic, my insurance doesn't cover Remicade and I was offered a choice between Cimzia or Humira. So it could simply be insurance silliness.
 
I also went on Cimzia as my first biologic. It does well for me. Good luck with it all. I just hope you find something that gives you relief!
 
I really haven't noticed any side effects. Just watch for infections in general. I would say the day after my injection I am more fatigued than normal. Good luck with them. It is scary to start it, but after you know everything does well with them it is less scary. I give them to myself, but had a nurse come out to show me how to inject them.
 
I've had muscle soreness after both injections so far. First time in my leg (injections were in my stomach) and second time in my neck (again injections in my stomach). Other than that no issues.
 
Have any of you experienced an increase in your CRP high sens test? Mine has tripled since starting Cimzia (2 months now), although I don't feel any different than I did when I started. My blood pressure was also elevated at my appointment last week...
 
Also, are any of you pregnant and taking Cimzia? Drs all say it's fine during pregnancy but I'd love to hear from some of you. My husband and I have just starting trying to conceive (another reason the high CRP and blood pressure are worrying me)
 

Orchid

Banned
It's pregnancy catergory B (generally recognized as safe in animal models; not enough human models to be moved up to A) and the protein has no form of activity that would directly harm the fetus. Azathioprine/6-MP (category C, known to cause heart deformities) and Methotrexate (Category X. used in abortions due to it's ability to rapidly kill a fetus)
 
My CRP has not gone up with taking Cimzia. It does change a little here and there, but not significant.
 
Thanks Orchid. Do you know much about CRP? What would make it jump like that?
Ideally, Cimzia would cause your CRP to go down because it is controlling the Crohn's inflammation. However, simple things like colds or even allergies can elevate CRP levels, making the test a little unreliable. I think that your GI should be aware of this new CRP level, especially since you are on a biologic. Was he the doc who ordered the test? It wouldn't hurt to give him a ring and ask why your blood pressure and CRP are elevated.
 
Wanted to give you all an update on my Cimzia journey.

It's been about a month since my first dose, and I have my third of three loading doses today.

I managed to eat solid food this weekend (pizza) for the first time in months and it didn't make me sick, nor did I feel much pain. Usually I get sick about 18 hours after eating solid food but it's been about 36 hours now and nothing. No bloating, no pressure, no nothing.

The gurgling I had has decreased significantly too. While I'm not ready to commit to a completely solid food diet yet, I am planning on introducing a little at a time to see how things progress and to determine if my small bowel is really improving.

Side effects continue to be stiff muscles and being emotional, both of which start a day after the injections and last for several days.

I'll update this in another week or two.
 
SCCrphnie...Congrats. I have tried a ton of TNF drugs with mild to severe results. Recently I had a liver biopsy done and was diagnosed with autoimmune PSC. I am on methotrexate and steriods. I have to preload with Zofran to take the methorexate injection because of severe nausea for up to 24 hours. I take Ursidiol and methotrexate for the PSC and I am in a semi remisson. I still
have to wear diapers when I go out because then it hits, its awful.

Hurray to all who have options and drugs that work.
 
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Now one week past my third of three loading doses.

I ate a LOT of solid food over the weekend - chicken nachos, pizza, chicken nuggets, etc. Seems like it backs up in specific places in my small intestines and gives me a little bloating and discomfort, but I'm no longer vomiting and the pain I do experience is something like 20% of what I experienced pre-Cimzia. So the medication has done something to reduce inflammation but I'm not completely there yet since food doesn't seem to flow as freely through my insides as it once did.

My next maintenance dose is in early June. Hoping the inflammation is further reduced between now and then.
 
SCCrohnie....I am so glad to hear you are doing well. If I ate those things I would be in the ER for sure. Glad you are enjoying solid food again. If it has worked so far I would be positive that it will continue to work. Yahoo.
 
Another update: it's been three weeks since my last loading dose injection was administered. At the two week and two day mark, I started feeling bad again with bloating and pain, so I cut out solid food from my diet again so that what I do eat will pass with little effort. No vomiting but I can definitely feel the bulges in my insides where food is backing up due to the inflammation in the small bowel.

I'm not set to see my gastro until after my first maintenance dose a week from today, but I'm going to ask if the medication could be administered in half-doses with twice the frequency (e.g. 200mg every two weeks instead of 400mg every four weeks).

At this point I fear I have a combination of scar tissue and inflammation. I could eat chicken and pizza and chips when I felt better but never ventured into other meats fearing a return to vomiting.
 
This is my thoughts on this. When I get a flaring I drink slim fast for breakfast and lunch. I found drinking alot of water helps too. Then for dinner I eat fish or chicken. No beef. All the veggies are cooked, no raw because it takes longer to break them down, and absolutely no fried food, fatty foods, and no pizza. That means cutting back on butter and oil. I find " I can't believe its not butter" doesn't bother me too much. This time of year you can get fresh veggies and steam or saute them. I hope this helps.
 
I agree with goofyrn2! I also do eggs, whites only if really flared. Boil or poach. I also could do turkey, sometimes chicken had too much fat for me. Give time for your system to heal and let the meds do their work. Oh and unfortunately any kind of chips were out for me. Sometime Tortilla chips, but not a lot.
 
I also agree with Kit. Good tips. I also used gluten free cereal and bread. Depending on your area you can get it fresh or frozen. It takes awhile to get the flare down. It has no problem rearing its head quick but takes time to get it settled. Unfortunately fresh fruit was out for me too. Hope all these tips help you recover.
 
The longer I have this disease, the less I seem to be able to understand it.

About three days prior to my first maintenance dose, my insides returned to normal and I could eat anything I wanted, but I limited it to pizza & chicken nachos, rice, eggs and toast.

Today, exactly one week after my first maintenance dose, I'm back to being in pain after having eaten chicken and pizza yesterday. But I ate chicken on Friday without incident.

Still no vomiting and I haven't ever felt the need to vomit but I am perplexed about how this disease can be so grumpy one day and so nice the next, especially when my diet doesn't change.

Given recent history, I should be feeling great in a couple of days.
 
I can't imagine Pizza is at all good for Crohn's. I find it drives my insides crazy short term or long term so I have just given up on it. Crohn's is a crap shoot for each person. No pun intended. Some folks can eat some things and others not. I find when I have even a twinge of any symptoms I go straight to fish for a couple days. I don't eat any fried food or any high fat foods such as chips and such....including fried chicken. Forget nuts and popcorn too. I know I haven't been much help to you but I started making a list of items that give me symptoms and yes it cuts out a lot of food but it has kept the bouts farther apart. Unfortunately I think all of us will be stuck with some kinds of symptoms on and off. It is the nature of the disease. Plus I have accepted that some days will be better than others and family is very supportive to me when I get into my down periods.
 
Nuts and popcorn I've cut out completely for over a year now. They make me sick for days.

Back to rice for a few days for me once I feel like eating again.
 
I figure it's time to jump in on the forum, so Hi all! It is great to read everyone's posts, the support here, the venting, just all around fantastic. I've been on Remicade twice (never failed, just became inconvenient to travel 2 hours every 6 weeks for infusions), officially failed Humira after a year and a half of repeating infections, extraintestinal manifestations of crohn's (EN), and flaring almost as bad as when I was first diagnosed. I'm a bit irked since my GI doc. didn't explain that as you work your way through biologics they are less likely to work for extended periods of time the higher # of them you're on. At 3 for 3 my hope for Cimzia faded a bit after hearing that, but I'd already had the first loading dose and feel committed to give it a solid chance.

I have never been in remission since diagnosed 8 years ago but Humira was the most successful and while on it I was able to complete my college degree with hiccups along the way, but made it all the same.

I've completed all 3 loading doses with no noticeable improvement and my first maintenance dose is in 2 weeks. I expect it to take some time due to the extent of active disease. Prior to starting cimzia we did a good thorough look at my insides to be sure the humira had failed and there wasn't something else happening.


Essentially, there's inflammation, ulceration and strictures from just above the stomach, in stomach, throughout small intestine, ileum is strictured to the point where a camera does not fit through, and patches of large intestine is ulcerated with one large mass that looks like cancer but is apparently just a nasty bit of crohn's according to biopsies. Our hope going into Cimzia was to decrease inflammation and pray that the size of the growth in my large colon decreases since technically it's inflammation as well.

After my first loading dose I noticed a decrease in my extraintenstinal manifestation (erythema nodosum - EN) and was able to walk/ practice yoga for the first time in ages. I was thrilled! But cimzia isn't supposed to work that quick so most attributed it to having a good week that lined up with my first injections.

Days before my 2nd loading dose the EN flared where I couldn't walk for 3 days again (this had been happening off and on every couple weeks for the past 10 months and there are no underlying causes other then crohn's/ inflammation levels). My Crohn's symptoms spiked, but this was during a move to a new state 1000 miles away and traveling/ moving stress certainly may have exasperated things. I wasn't able to keep down food - I'd eat and immediately vomit if I was lucky enough to even swallow anything. What food I did keep down came back out and bm's increased from 2-3 times a day to 5-10. Pain and cramping would wake me up periodically throughout the night and my weight dropped 10 lbs, down to my weight at point of diagnosis (about 25-30 lbs underweight), in 3 days. This was odd because while I'd been flaring for about the past year with acute signs in my digestive tract I hadn't been experiencing a huge increase in number of bm's, stool consistency, etc. Mostly i'd just been struggling with EN, terrible nausea, cramping/ bloating, and occasional pain after meals that would leave me immobilized for 15-45 mins. at a time. I went to my Dr. and was tested for c-diff. No c-diff so she put me on 20 mg Pred. the one med. that never fails to make an improvement - for better or worse. Over the past 8 months we've done several weeks of low doses pred. w/ slow tapers to keep the EN managed so I could continue working at the time.

After getting the OK to go forward with my next loading dose I took my 2nd dose 2 weeks and 2 days after the first. I was feeling a bit better, but I'm guessing it was the pred. kicking in.

After the 3rd loading dose coming up on 2 weeks ago I began to experience severe pain upon bm, cramping that would wake me up throughout the night, and a lot of blood, but nausea and overall pain in the torso was down - the feeling of a waistband touching my belly didn't make me want to scream anymore. After talking to my Dr. she doubled the pred. so now sitting at a 40mg dose.

I'm getting the sinking feeling that any improvement I've been feeling is solely due to the pred. Which is fine for now - frankly I just want to have some semblance of life back again, but it is not a long term solution. At this point if I could get a solid year out of Cimzia to manage symptoms I would be overjoyed. I get the feeling my Dr. doesn't have the utmost belief in Cimzia for me.

Just needed somewhere to get all that out there. It's been eating at me more then I'd like. If anyone has any thoughts or personal experience to share I'd love to hear it. Especially wondering how long it took for Cimzia to kick in for many of you, and how exasperated conditions were before you began taking it. etc.

Fingers crossed this med works and you'll be seeing me on this thread/ group for a long time yet!
 
Welcome to the forum Duh!

You've probably read my posts in here. I've had two maintenance doses of Cimzia now (in addition to the three loading doses).

The longer I'm on Cimzia, the longer I feel things incrementally improve, albeit slowly. Remicade was a fast-acting wonder drug for me. Cimzia so far has improved things maybe 30-40%. I've read of others who didn't really have their Cimzia kick in for six months. Others got no response at all.

My advice would be to keep your gastro doc informed and be patient. With a lack of other biologics, it's worth continuing to try this medicine for a period of time. That's the route I'm taking.
 
Hi Duh

Welcome to the forum.

I read your story and I feel for you. Just as SCCrohie wrote its a waiting game and seeing what chemicals work for you. I have been through a boat load of medications and finally found the combination that helps me. I am always encouraged by the stories out there because it at least tells you that one day you will find one too. Yes, patience is hard. I can attest to that. You just want to feel well and you hope this drug will work but it just depends on what your body adjusts to. The other thing you can do which I do is to keep a diary of those foods I have realized just don't work. For example beef and pizza. I have completely eliminated those from my diet. It means you have to start at square one but maybe it will bring you to a point to lessen your symptoms. Of course the biggest thing is fried food. I have also found even though I do not have celiac disease a gluten reduced diet helps too. Just suggestions. Hope to hear your progress soon.

Cindy
 
Panda so nice of you to join the forum. I am so sorry you are having a rough time. Hang in with the Cimzia and I agree with goofy, food diary and small meals. I was on Cimzia, but I ended up having surgery in the middle of it. I continued with it and have been on it for 2 years since surgery and I would consider myself in remission. The only thing I have problems with now is fatigue. I am glad you found a place to vent.
 
Been about three weeks since my last update so I thought I'd share the latest with my Cimzia journey.

I had my last maintenance injections two days ago, but for the week prior to that I was in a lot of gut pain. No vomiting yet thankfully but the episodes of pain last 5-10 seconds each usually followed by gurgling sounds, so it sounds like my small bowel still hasn't opened up completely from the medication.

I called my GI and made an appointment for next week to see what he wants to do in terms of dosage and frequency. I'm not ready to concede to surgery yet. I know it's possible to feel better on this medication but just have to have it delivered at the right interval and at the right dose.

I'll post another update once I know more. For now it's mostly back to the BRAT diet for me.

I continue to have faith that this medicine will work and am committed to giving it time to work. I've gained two pounds since my low a month or two back, so something's working...albeit slowly and unpredictably at the moment.
 
Dear SCCrohnie.
Hang in there and thank you for the update. I have been in the ER twice with radiating chest pain but all my cardiac markers and EKG is fine. I saw a Cardiologist yesterday and he wants to do a stress test tomorrow. He feels almost certain it is GI related. So I have an appointment with the GI doc next week. What a web we weave with our Crohns disease.

Cindy
 
Amazing how all the internals intertwine isn't it Cindy?

I wish you the best with your stress test and recovery! Keep me posted!
 
Dear SCCrohnie.
Hang in there and thank you for the update. I have been in the ER twice with radiating chest pain but all my cardiac markers and EKG is fine. I saw a Cardiologist yesterday and he wants to do a stress test tomorrow. He feels almost certain it is GI related. So I have an appointment with the GI doc next week. What a web we weave with our Crohns disease.

Cindy
Good luck Cindy. It's something I've also had occur recently. Rapid intermittent heart rate and radiant chest pain. Blood work, EKG, echocardiogram and halter monitor were all basically normal. I'm to the point I think this is reflux (though I take omeprezole) or perhaps panic attacks.
Please let me know what you find out from your stress test. I'd be interested in what they find. Hope you feel better soon and get some answers.
-Sara
 
Thank you for the suggestions SCChronie, Goofyrn2 and Kit. It's certainly been a while since I've taken the time to track any symptoms/ changes after specific foods, and it is certainly paying off. I still hate doing it, but for some reason hearing "keep a food diary" from other crohnies, instead of from my mom, actually leaves me feeling motivated with a purpose rather than feeling like its just a medical task to keep track of.

Overall I would say I'm on the path to feeling better - there are noticeably "good" days which I have been ecstatic over. So nice to be able to accomplish more then just "shower, nourish body, exercise, chores" in the course of a day!

Gained 2 lbs. in the past couple weeks - I'm pretty sure it is from these mean munchies the Prednisone has been kicking up in me but I don't have any complaints except for wanting chips and salsa like a mo-fo (unfortunately both corn and tomatoes are no bueno - not even OK as cheat foods now and then).

Took first maintenance dose of Cimzia yesterday... felt great energy wise this morning, now crashing hard with really bad nausea. How many experience nausea/ an uptick in symptoms in the day or 2 following injections?

It has been a while but I remember Remicade leaving me nauseous and feeling a bit crummy after infusions - perhaps just something with TNF blockers?
 
Dear SCCrohnie.
Hang in there and thank you for the update. I have been in the ER twice with radiating chest pain but all my cardiac markers and EKG is fine. I saw a Cardiologist yesterday and he wants to do a stress test tomorrow. He feels almost certain it is GI related. So I have an appointment with the GI doc next week. What a web we weave with our Crohns disease.

Cindy
I'm so glad I'm not the only one who has this too. My blood pressure increases significantly within the first week of my Cimzia. I'm now on BP meds and was admitted to the hospital because of that and chest, shoulder, and jaw pain. My EKG was a little off after cimzia but by week three it went back to normal and then after my next injection it started all over.
 
I am tired a few days after my injection, but I haven't experienced nausea. Keep up the good work on the food diary SCCrohnie.
 
I have a post-GI visit update.

I've put on four pounds since my last visit at the end of March! Going to do injections every two weeks instead of every four weeks - the dosage won't change but will just be split up. He felt around my abdominal area and I winced when he hit an area on the right where he saw I had inflammation on the CT scan a few months back. Terminal ileum must still be inflamed.

Otherwise it looks like I'll continue to do Cimzia. I got the impression it's going to take some time to heal up but since it seems to be working to a point so far we'll let it continue and see if things improve even more.

I go back in three months for another appointment.
 
Hang in there SCCrohnie. It a matter of finding what works and I have found with Crohn's it just takes longer than we want. Hope it gets better over the next three months.
 
Been a while since posting here but since there's been some recently big changes I figured I'd give an update.

Just got approved today to begin Entyvio and will be making the switch shortly. I haven't noticed many changes while on Cimzia although it does seem some repeating sinus infections I struggled with and were partial cause [and what should have been initial indicators for me] for stopping Humira are returning. We should be seeing something by now and my body is in no condition to risk the potential side effects of continuing the medication further on hopes and wishes alone. This combined with the fact that within a week of tapering my prednisone 10mg symptoms became way worse indicates the pred. is the one thing holding me at the moment not the Cimzia.

Wishing you all the best of luck and here's to hoping Entyvio's a success!
 
Wow that is great. I had not heard of this drug. I have failed on all the TNF drugs due to severe reactions. Please keep us posted on how you do. I went to the web to research it and it does sound promising. I have been down the humira, embrel, cimzia, symponi, etc again with problems. The only thing I am on right now is Methotrexate and steroids but it isn't keeping me in a beneficial remission. Good luck. I understand from the research if you don't see significant results in 14 weeks you should stop the med.
 
Another update from me:

I'm two weeks post-injections and have not gotten on doing them bi-weekly instead of every four weeks yet because last month it seemed the Cimzia worked longer than the previous month. I'm going to hold off on increasing the frequency for now.

I ate chicken, mashed potatoes, dumplings and a biscuit for dinner last night and woke up with some pain and bloating this morning but it wasn't severe. Took a hot bath and I feel pretty good now about three hours later.

I feel as though I should try to introduce foods back into my diet from time-to-time to see if my intestines can handle them yet. Eating all of that five months ago would have meant vomiting for me. Today, just some discomfort as it tried to push through my small bowel.

I continue to be optimistic that Cimzia is going to work for me long-term but the wait for full recovery is slow. I don't believe higher doses are FDA approved and my doc isn't big on steroids so we'll see what he thinks late next month at my next appointment.

I can still eat turkey and pizza with no issues and I'm sure my weight is still coming on. I can hardly notice my ribs now. Yay!

Cimzia suppresses my immune system and I do end up with little infections from time-to-time but nothing that has required antibiotics lately. Usually it's a little something in my throat that gets down into my upper respiratory system that then clears up in a couple of days on its own.
 
Hi Crohnie. I can't stress enough to keep a food diary to start to pin down the foods that will not cause you the symptoms you are having. Its the only way I could get a grip on all that.

From what I have heard and I am no expert on Cimzia it can cause weight gain. I would get the diary going and get control of that before I worried about the weigh gain. I have that problem as well. I am not on Cimzia. I tried it and had an allergic reaction to it.

I was just on a run of Cipro and my liver enzymes went through the roof. I now have to have my liver enzymes check mid dosing and at the end. I understand from my liver doc who follows my PSC that is not uncommon. But I didn't ask if that is because of the PSC or just the antibiotics. It is a puzzle. I would love to hear if anyone else has that problem.

I make my own chicken and dumplings that is fat free and tastes just as good as any on the market. Maybe there was too much fat in what you ate. Fats get me every time yet you can eat pizza. That is surprise unless it is getting to you a couple days later. Get food to see if that is the case.

I hope this helps you.

Cindy
 
So I am new to this group and my medicine (Cimzia) comes on Tuesday. They said I have the option of 2 doses at once or within two weeks of each other. I was kind of wondering if anyone has any insight as to which is best. I am going to ask my Dr also but she doesn't take the medicine, you all do. Thanks
 
I do mine two doses once per month but I had considered doing one dose every two weeks because it wasn't lasting for the entire month. But now that I've been on it several months it's lasting longer.

It's really your preference though.
 
So there's no problem with all of the sudden having all of this medicine in your system, when there wasn't before. Or I was thinking maybe ot might not be so hard to give yourself a shot if you just got them both over with. Anyway thanks.
 

Orchid

Banned
There is, a local injection site reaction. Swelling, redness, maybe even itchiness. I run a low fever for a day or two after my injections also.
 
So there's no problem with all of the sudden having all of this medicine in your system, when there wasn't before. Or I was thinking maybe ot might not be so hard to give yourself a shot if you just got them both over with. Anyway thanks.

I had a stiff muscle somewhere in my body the day after my first two sets of injections but that's all the issues I remember having.

Also, they did loading doses for me at the beginning, so I had two 200mg injections every two weeks for the first six weeks.
 
Good Morning to all. I have now failed on Methotrexate so my doc is getting me approved for Enytvio. It is a new drug, approved by the FDA, for the treatment for UC and Crohn's. Methotrexate and steriods were my last hurrah with all the failed medications (long list) of the TNF drugs, etc. I was so glad he had something else to offer me. It is an infused product. He feels pretty sure I will be approved with all my symptoms and failed attempts on the TNF drugs and corticsteriods. I am off to get labs done and a colonoscopy on Monday as part of the approval for the drug. I will keep you posted of my progress once it starts.
 
I had a stiff muscle somewhere in my body the day after my first two sets of injections but that's all the issues I remember having.

Also, they did loading doses for me at the beginning, so I had two 200mg injections every two weeks for the first six weeks.
The loading doses is what my rheumy told me about but then the company delivering it to me said 400 mgs 1 a month. No idea at this point. I am still not happy about giving myself a shot, but I guess if it works it's worth it. I am just beat down and sick all of the time and the arthritis is killing me.
 
I know. I thought about that too. I can go to my Dr office also if I need help. I don't know everything seems so extreme. I've had crohn's for 17 yrs. But it's the arthritis and AS thst has finally Put me out for the count. Just fighting the inevitable I guess.
 
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