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Crohn's Disease
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Posted 8/13/2018 4:35 PM (GMT 0)
I finally got approved for Cimzia (spelling). I was on Remicade for ten years and it stopped working in November of last year. Got a final dose of Remicade in January because they wouldn't listen to my complaints of pain. Then in June tried Humira and had a reaction and was put on a high dose of steroids but am maintenance dose of 10 mg and am gaining so much weight because can't stop eating. Finally rx was sent into the a specialty pharmacy. It is now August 13th. I am so frustrated I was going to look for another doctor because I don't trust him anymore! Please say a prayer for me because I can't take this Crohn's pain and other symptoms anymore. Hate this disease. mad: Hope
Posted 8/13/2018 6:25 PM (GMT 0)
I understand why you are so frustrated. How long was the dr. intending to keep you on steroids? I've never been on them for more than 6 weeks at a time, but I know others have been on longer term.
I hope the Cimzia works for you, did he say anything about Entyvio just in case it doesn't work?

If you aren't comfortable with this doctor then you should probably at least get a second opinion. Is there another dr. in the same practice that you would be ok with? It might be easier to get an appointment than starting all over again and having to wait to be seen.

good luck and fingers crossed new meds work for you!
Posted 8/13/2018 9:58 PM (GMT 0)
Prayers coming your way. I'm surprised that he didn't opt for Entyvio or Stelara first. Did you mention either to him before deciding on Cimzia? Hope things start to improve soon. Keep us posted.
Posted 8/16/2018 6:41 PM (GMT 0)
Maggie, you had mentioned in another thread that you had spoken to the Specialty Pharmacy. Did they indicate how long it would be before the medication was available. I know you have had issues with your current gi, perhaps once you get started on the new medication you can scout out a new gi.

Keep us posted.
Posted 8/16/2018 8:07 PM (GMT 0)
Just got off the phone with the pharmacy and they said to call them tomorrow to see the progress of the rx but there was a delay from the insurance company. Before I got on Remicade years ago I was on steroids for a long time. I am on a maintenance of 10mg for awhile. Hopefully it will happen by next week. I am really getting depressed.
Posted 8/17/2018 6:08 PM (GMT 0)
Maggie, hopefully something will happen soon for you. Again, if you feel your dr is not listening to you & dragging his feet, don't be shy about looking for a new dr. Patients now have to advocate for the best care they can get.

Keep us posted.
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