Re: Switching between anti-TNF alpha medications
Wow, this is great news. Information is power, right? Thanks Patricia for all your wonderful posts. I SO appreciate YOU! Jeanette
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Re: Switching between anti-TNF alpha medications
Thanks Patricia, that kind of reaffirms what has happened with my son. He developed antibodies to remicade, had reactions, and couldn't take it. Humira was ineffective. Last May he tried cimzia and had almost instant relief from pain. It is 2 shots, but it is given at the same time, so it is really once a month. We are a little concerned that it is starting not to hold him for the full month, but it has been better than anything else he has tried. For a very difficult patient as far as compliance with meds, the once a month med has been great. Thanks for all of your work and information for the board.
Hope
Jamie, 22, CD since 8/99. cimzia, bentyl
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Re: Re: Switching between anti-TNF alpha medications
You may want to discuss the possibility of repeating the induction round of shots. There has been some success with Humira and Cimzia getting people back to a regular regimen by repeating the induction series of shots.And there's the option of adding an immunomodulator. I would look at the possibility to using Methotrexate orally like we do (rather than doing it as a shot). It's once a week rather than daily. And there's the option of doing a brief period of elemental diet to try to kick him back into a solid remission. Has his doctor started doing annual or biannual scopes to check him for colon cancer? Given he's 10 years out from diagnosis this would be the expert recommendation for the start of surveillance scopes.
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Thanks for your suggestions and I'll keep them in mind going forward (except the elemental - no way would he do that). Jamie has some other issues with diarrhea since his surgery five years ago, and we are adding cholestryramine to see if that helps, in addition to the bentyl. He also doesn't eat very well or take care of himself very well. He's 22, lives with some other guys, not much I can do. He had a scope right before he started the cimzia but the doctor hasn't said what his schedule would be going forward. He goes back to the GI in a few weeks, so we'll see how long the cimzia holds him this month. I'm just glad that the cimzia has worked as well as it has, although it makes me nervous because its so new and long term effects are unknown. You have to balance that against quality of life though. Take care
Hope
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Re: Switching between anti-TNF alpha medications
Patricia,You've been a busy Gal today! Thank you for all of your research.
This one in particular is of interest to me and I am going to pass it on to Nicole. I still haven't heard what her GI has up his sleeve for treatment since even Remicade Triple is not working for Nicole. At one time he felt that if Remicade stops working Humira probably wouldn't work either. I found that a strange statement, unless Nicole had relayed it to me wrong being her GI is first and foremost a NYC Mt. Sinai Immunologist, Researcher, Educator and then GI after all of that. MaryS (Nicole, 27, dxd Crohns/Colitis, age 17, Remicade triple/Imuran/Asacol which are currently not working)
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Re: Re: Switching between anti-TNF alpha medications
I agree, good reading material to go through!! Thx Patricia-Mary, I have heard that train of thought before, but from our experience it did work. We were told kind of the opposite of Nicole... if the person responded well to Remicade, then chance of responding to another anti-TNF are better than if the person didn't respond to the first one. Humira has actually worked a little better for Haley, she doesn't get the breakthrough symptoms, like D at week 4/5 etc. she did with the Remi. (that started within 1 year) Well I hope she talks it over with her Gi and if she does begin Humira that it helps her feel better again  Allyson
Haley 13 CD; Humira MTX
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Re: Re: Switching between anti-TNF alpha medications
You can read the information yourself at www.thecdwg.orgYou have to register and it asks if you're a health professional. I fudged and chose other I think. But once you register it's free and it gives you as close to the inside scoop as you can get without going to the big conferences and playing wallflower while the top gi's discuss their cases and preliminary research results that aren't published yet. The CD Working Group is a consortium of IBD centers around the country including Mayo. It's a really cool site because it's designed for "insiders" to use. One thing about doctors - they do not have a lot of time to read a bunch of stuff. so almost everything is short, to the point and most of it is in Power Point slides with pictures and brief summaries below. It makes it really easy to use the site - provided you have a moderate level of sophistication about clinical trial results and basic knowledge about CD. The information on switching between meds is in the library files - core library - biologics - WELCOME study and the GAIN study both looked at this issue. Going to a third anti-TNF alpha has only a small study to support it but the initial results were very similar to the rates of going from the 1st to the 2nd med. Hope this helps calm your nerves. Frankly I would be very pointedly asking WHY NOT go on to Humira or Cimzia since it is pretty clear that Remicade is not working anymore. The other thing is that my personal opinion is that, if there is focal disease and anti-TNF alphas are not keeping you in remission, that maybe it's time to visit the surgeon and discuss the pros and cons of surgical resection. Patricia
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Patricia,Nicole had a recent MRI (not as good as a colonoscopy I know)and the results of that were as her GI said "wonderful and beautiful". I was beginning to think that maybe she was heading towards surgery in the not so distant future. She is feeling like she did for the first 4 years after diagnosis before Remicade induced remission and she is not thrilled to be returning to that dreaded place again. She is missing days of work like she missed many days of College back in those non-remission years and it is creating tension between her and her Supervisor who is not sympathetic to anyone's plights but her own and with Nicole being on 6 month new employee probation which ends next month, not sure how stellar of a job performance review she will have. Thanks again for all the information you research and find for us. You are worth your weight in Gold!! MaryS
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Sounds like it might be time for Nicole to get a 2nd opinion.Just my 2 cents. And of course she will do what she will do 
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Patricia,! I doubt she would do that. She hated her first NYC GI and loves her Dr. Mayer. I have to say that he really does his best for her considering they don't actually connect and powwow in his office too often since he is only in Office two half days a week, BUT he is always a phone call away and has always returned her calls no matter if he is driving the mad crazy streets of NYC or getting ready to hop a plane. He also recently, personally went to bat with her new health insurance company to let them know that "They WILL pay for her MRI" after it got denied by her old health insurance and her new one. And then he managed to get her a quicker MRI appointment than the norm. Sometimes I think it might be Nicole who is playing possum in deciding future treatment maybe. I know that she is leery of Humira injections which I can't figure why since she can sit through the needling of some expressive body artwork and the many years of IV needling trying to find non-existent veins. MaryS
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It's different when you are giving yourself shots I think. If someone else does it you have some distance from it and can cope better - at least when your younger or tend to have some anxiety about your health or needles.Cimzia takes 2 shots a month but I understand there's a new anti-TNF alpha in the pipeline that would be only 1 shot a month. It's great he's so responsive to her. I can understand why she is loyal to him.
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Patricia,I have been seeing ads on TV for Simponi which is a once a month injection for RA and have been wondering if it will makes its way
to IBD use. Its made by Centocor. MaryS
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Yes, I believe that is in the works. It's supposed to be only one shot a month where as Cimzia is two because you can't give the whole amount at once.
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Patricia and Mary, cimzia is two shots, but you give them at the same time, once a month. They now have pre-filled shots, so the specialty pharmacy delivers them to us, and Jamie gives the shots to himself.
Hope
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Re: Switching between anti-TNF alpha medications
Thanks for posting this. This addresses one of my major worries about Humira. I thought that we had reached the top rung of the medication ladder with nowhere else to go. It's good to hear that we can move within this medication range if needed. I am consistently amazed by the range of your research and knowledge.
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