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Crohn's Disease Forum » Treatment » Cimzia/Certolizumab » Cimzia Club Support Group


 
07-03-2013, 05:17 PM   #301
newway
 
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Hello! I am new to this forum. I was newly diagnosed with Crohns and went right to Cimzia. Fortunately my insurance is covering it.
I am on my second loading dose and noticed almost immediate response to this drug. I feel so much better and have almost normal energy. I am concerned about the side effects and was wondering how long people have been on this drug and if it is working long term?
I appreciate any information anyone has regarding this medication. For me so far so good.
Thank you so much
07-04-2013, 08:07 AM   #302
Crohn's Mom
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Hi newway and welcome !
I'm glad for you that the Cimzia is working so well and so quickly- hope it continues for a very long time!

My daughter has been using it for a little over 2 years now. It did pretty well for her for a long time, but now it seems it's not so we are seeing her GI doc soon to see what he recommends next.

Be well and hope to see you around the forum!
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07-04-2013, 08:12 AM   #303
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Hello, I'm also new to this! My boyfriend was diagnosed 3 years ago and was put on Cimzia. Lately, it hasn't been working, so they are looking into stronger medicines. It makes me nervous!
07-04-2013, 09:39 AM   #304
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Don't be afraid of the other medicines (they all have enormous side effect listings) but most of that is for a very small percentage of people taking them. Sorry Cimzia isn't working for your bf but I hope you find a drug that will.
07-08-2013, 02:25 PM   #305
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i am on my second loading dose, maybe a modest improvement but still taking prednisone and occassional pain meds. I am encouraged, though. My question is that I get conflicting dosage recomm. 400 mg , once a month, two injections. Or a 200 ml injecton twice month. My doc suggests 400 ml once per month, but many folks on line do 200 ml every 2 weeks,,not sure it is big deal, but thought I would get some feedback.
07-08-2013, 04:40 PM   #306
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Twbuto, how much prednisone are you taking and how are you tapering? I tapered off prednisone prior to starting Cimzia, but the Cimzia hasn't completely kicked in yet so my doc put me back on a low dose of prednisone (10 mg). I'm just curious about what it's like taking the two drugs together. I'll be at the two-month mark with Cimzia next Monday (and all I can say at this point is, thank heavens for prednisone!) I had a little kick from Cimzia with the second loading dose but it didn't last.
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Been there, done that: Sulfasalzine, Pentasa, Asacol, Prednisone, Budesonide, Cimzia, and more colonoscopies than I can count
07-08-2013, 06:10 PM   #307
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I'm taking 30 ml pred. Without this amount stomach cramps are severe and muscle cramping is a killer. I will taper down in coming weeks but not real confident as of yet. After dosing is done will you do 400 once a month or 200 twice per month. But having gone through Pentasa, Humara, and way too many pain meds, I'm hoping Cimzia gives some lasting relief. Anemia is the thing that I really have to watch. Iron saturation levels are a struggle, but with regular blood tests and, infusions we are keeping these numbers incheck. Good luck and keep the faith.

Last edited by Twbuto; 07-08-2013 at 06:20 PM. Reason: Add information
07-08-2013, 07:20 PM   #308
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Was 30 Mg your high dose on prednisone? How fast will you taper? I am trying to figure out how I will know if relief comes from Cimzia or Prednisone. I have always had good results from Prednisone and would take it all the time if I could.

I'll be taking 400 ML of Cimzia once a month now that I've done all the loading doses. I am eager to see if next Monday's dose is the charm.

I hope you get relief from Cimzia, Twbuto, and soon!
07-08-2013, 07:46 PM   #309
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Funny you should ask the question of Pred vs Cim. I've been trying figure it out as well. Here is what I've done. 40 ml Pred ,,felt great. Began Cimzia. Tapered each week by 10 ml. In the meantime had my second loading dose of Cimzia Once I began 20 ml Pred , the pains began,hello Vicodin. After a few days, upped the Pred back to 30 ml and began feeling better. I will start tapering again next week to 20 ml and see how it goes. My next Cimzia is in 2weeks. But you are spot on,,how do we know if it is Pred or Cimzia which is helping. I think I need to give Cimzia 3 months to see if it is beneficial ,as I taper the Pred. My Dr. is only marginally helpful. It's amazing how little they know about this stuff. So hope this was helpful,,take care friend and good luck to you and posted me anytime.
07-11-2013, 11:42 PM   #310
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Hi newway!
I've been on Cimzia for two years now and had no issues. Was worried about all the side effects but have been healthier on it than I was before I started taking it. No colds, flu, or infections and I used to be the first one to catch everything. Maybe my immune system was too hyper?
07-12-2013, 12:28 AM   #311
newway
 
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Hi Cornfieldgal!

That is such great news! I feel really good as well since I have taken Cimzia. My third Loading Dose is this Monday. It is so encouraging to hear that you are doing well!
Thanks so much!!
07-12-2013, 08:16 AM   #312
Kit
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@twbuto, i was never offered a 200ml injection every 2 weeks. I have always done the 2 every 4 weeks. I want to say when I have talked to a Cimzia rep that is what she said the dosage was.

Side note, I would give Cimzia 2-3 months to kick in. I want to say that is when I started to see changes.
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07-12-2013, 10:42 PM   #313
nogutsnoglory
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I do the two every 4 weeks I asked about 2 every 2 weeks but was told the research isn't there to support it being more effective.
07-12-2013, 11:37 PM   #314
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I also do two injections every four weeks. I think that is pretty normal for starting out on Cimzia.
07-13-2013, 08:25 AM   #315
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I think most do it monthly some do 1 injection every 2 weeks and even fewer do 2 injections every 2 weeks.
07-26-2013, 12:14 AM   #316
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I have been on Cimzia since March and am losing my hair bad. Don't know what to do, I have a dr. Visit coming up in a couple days and will tell him to do something before I'm bald!!
07-26-2013, 03:01 AM   #317
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don1Jones, I have been on Cimzia for about 2 years now and it is the best thing since sliced bread for me. What you said in your post really scared me for your sake. If your doctor didn't take a TB test and isn't giving you a blood test every three month I truley think with all my heart you need to find another doctor. you also need a chest xray as well. PLEASE seek another doctor I know your not getting the care that you should and deserve to be getting. Please keep us posted. I wish you the very best.
07-26-2013, 06:12 AM   #318
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I've been on Cimzia for 3 months and my hair is really getting thin and I'm already preparing myself for balding in the the very hear term. Anyone with similar experiences?? And does this lessen as time goes on. Thanks and good luck to all my Cimzia chums.
07-26-2013, 10:05 AM   #319
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My daughters hair thinned a lot the first few months as well. However, she did not go bald and it slowed down and then stopped. She did take Biotin as a supplement to help tho, and she still does.
Her hair has grown back in and is back to it's normal thickness
Best of luck and I hope Cimzia does wonders for you !
07-26-2013, 11:04 AM   #320
nogutsnoglory
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I'm happy to hear your daughters hair is growing back. It seems that a lot of people losing hair on Cimzia benefit from Biotin. I wonder if the drug inhibits absorption of biotin or decreases its level. I didn't see anything about that when googling but it's an interesting thought.
07-26-2013, 12:20 PM   #321
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I'm taking biotin on a regular basis, I hope mine stops falling out.
07-26-2013, 12:26 PM   #322
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I've been on Cimzia for 3 months and my hair is really getting thin and I'm already preparing myself for balding in the the very hear term. Anyone with similar experiences?? And does this lessen as time goes on. Thanks and good luck to all my Cimzia chums.






You sound like me, Cimzia does not list loss of hair as a side effect,maybe I should call them.
07-26-2013, 01:18 PM   #323
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My hair was thinning before I started Cimzia from all of my weight loss, but it has gotten so much worse on Cimzia. I'm young, I really don't want to be bald! So frustrating.
07-26-2013, 02:33 PM   #324
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Essie it sounds like malnutrition and absorption may be the problem. Hair loss on Cimzia is very rare. I would focus more on nutrition as a factor in combatting it.
07-26-2013, 04:52 PM   #325
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Thanks for the reply. I brought all of this up to my GI and he didn't even bat an eye; he showed absolutely no concern for my weight loss, which has been pretty dramatic for someone who wasn't trying in the least to lose weight. He seems to think I just need to eat more, or that I am losing weight to get attention! I am switching to a new GI next week because of numerous reasons, but will mention all of this to the new doc. I mean, how wrong was it that he didn't even suggest a nutrition shake or simple blood tests to see if I'm deficient in anything?! Anyway, I'm pretty sure the new GI will want all of my levels and stuff tested, so I will ask for some vitamin and mineral numbers to be tested as well.

I would like to start taking biotin, but I have a couple questions. Is there a certain brand that is better than others? Or is it better to use biotin shampoo rather than take supplements?
07-27-2013, 05:13 PM   #326
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Hi all,

I have had on and off hair loss on Cimzia, but I thought it was just hormones or flares. My gastroenterologist suggested taking a multi-vitamin for hair and skin. I have been taking GNC Hair, skin and nails for over 3 years now. It has a high dose of Biotin and other herbs. http://www.gnc.com/product/index.jsp?productId=13089079 I still went through a period of hair loss after surgery, but this helped a lot when I first started to lose hair. I hope this helps. I have never used the shampoo and didn't even know it exsited.

@ Essieluv--- I am so glad you are finding a new GI. Please make sure that it is one has experience with Crohn's patients. I am so sorry you had a bad experience with your current GI. Good luck to you and keep us informed.

Kit
07-29-2013, 02:59 PM   #327
lblair
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What is the difference between Cimzia and Humira my Dr has not even mention Cimzia he started me on Imuran and had a reaction to that so they started me on Humira its been 3 weeks no real changes I know I have to be patient!!!!
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07-31-2013, 08:47 AM   #328
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What is the difference between Cimzia and Humira my Dr has not even mention Cimzia he started me on Imuran and had a reaction to that so they started me on Humira its been 3 weeks no real changes I know I have to be patient!!!!
I am not sure what the difference is. They both are TNF blockers, but I think they do it in different ways. Check out the websites for more information. I know this isn't much, but I hope it helps some.

kit
07-31-2013, 11:41 AM   #329
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thanks Kit
08-01-2013, 06:32 PM   #330
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Your welcome lblair!
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