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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisone stops working ??? Now what ???


03-13-2010, 11:33 PM   #1
theend2
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Prednisone stops working ??? Now what ???

Just wondering is anyone has had any experience with nothing else working except for Prednisone? Then to have the Prednisone to stop working?


03-14-2010, 12:04 AM   #2
Justicexhaze
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I have been on and off prednisone for so many years (37 years) sometimes I wonder if it is really helping now. Even with humira injections and prednisone my crohn's seems to be having it's way with me. I am not going to stop taking my meds but I am also looking into simple diets...nothing crazy...mostly staying away from sugar.
So has prednisone stopped working for you?
03-14-2010, 06:52 PM   #3
bella_sky
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I'm sorry to hear your suffering with such a lack of helpful medications. I hope that Remicade, Humira, etc have been ruled out as help for you. Best of luck, and if your next step is surgery, hope it goes smooth and provides much needed relief,
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27 F - Dx with Crohns in 7/2009. Currently on Humira, Imuran and Prednisone. Remicade caused drug-induced lupus. Dx 11/2009: Hemangiopericytoma tumor in/around spine. Dx 2010: Crohns Arthritis, Avascular Necrosis in both hips, bursitis in both hips, neuromas in back & foot. Currently being tested for Endometriosis.

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03-14-2010, 09:20 PM   #4
theend2
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I have tried remicade that did not work I have tried Humira that did not work I tried 6MP that did not work I tried Methotrexate that did not work. Only thing that does work is prednisone so I was just wondering what happens if prednisone stops working? and wondering if anyone has had this happen. I am afraid of this happening seeing I have been on it for over 2 1/2 years.
03-14-2010, 09:21 PM   #5
theend2
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Justicexhaze whats the longest time without a break have you been on prednisone?
03-14-2010, 09:25 PM   #6
Crohn's 35
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Hi theend... wow you sound like me ... I have tried all too and now on Predisone 30mg and methotrexate. I know there is Cimzia and it could be your next try. Has the doctor ever discussed surgery? How bad is your symptoms? Are you narrowed? I am like you, if the methotrexate dont work... Cimzia isn't here yet in Canada. Really watching nasty things like sugar, dairy, and avoid high fibre and junk food. If I eat the wrong thing, I pay.. Keep us updated on how you are doing...if I haven't done so, welcome to the forum!
03-14-2010, 11:11 PM   #7
theend2
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Hello Jettalady,

Thanks for welcoming me to the forum. Glad to be here. I am trying to get on Cimzia but my insurance company denied me.They said that the FDA has not approved it for Ulcerative Colitis yet and this is what I have. Let me tell you its been a roller coaster ride that is for sure. I have been reading all these posts and it sure sounds like I got the same symptoms as many people that have crohns. I see there is a new drug coming called Vedolizumab hopfully this drug is release soon. But for now prednisone. If I lower my dose to 20 or below I start to bleed and I then get dizzy with anemia then I feel like puking this can last for weeks while I increase the prednisone then slowly things start to go back to normal its crazy. So I have to stay on long term prednisone but all my doctors say I can stay on it long term. Well its been 2 1/2 years and counting and its been driving me nuts. Its a love hate relationship if you know what I mean.
03-17-2010, 03:41 PM   #8
saidinstouch
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I wouldn't worry too much about prednisone stopping working because the glucocorticoid receptor is required for you to live. There are other ways it could stop working that are too complicated to get into (and that I only know rough pieces of information on), but those would probably be associated with other health problems as well. Hopefully this helps alleviate your concern some even if it isn't a strict guarantee.
03-17-2010, 03:47 PM   #9
Sue-2009
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said in touch...you probably know this, but years ago people took only prednisone, right? So, are they terminal? Or living with many problems associated with? Just wondering...How long can people be on it! Sue
03-17-2010, 06:23 PM   #10
saidinstouch
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One way to think of prednisone that a collaborator brought to my attention is that it causes clinical signs of aging at both an organismal and cellular level. Why this happens is fairly uncertain, but things like osteoporosis, muscular wasting, shifting of the fat pads, are all things that happen as we get older. It is an active area of research, but the system is so complex it is hard to tease answers out of.

As to how long someone can be on it...I'm not that certain. I would imagine for their entire life, but it leads to weak bones and an inability for the skin to heal from wounds due to decreased collagen production. These people probably just appear to be older than they really are and suffer from maladies related to age moreso than people of their age group.
03-17-2010, 07:50 PM   #11
D Bergy
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Have you looked into Low Dose Naltrexone?

Since it works opposite of immune suppressing treatments, it may work better for you, since immune suppressants are not working any longer.

May be worth a shot. There are several threads on it here. I use it, and it is working quite well.

http://www.lowdosenaltrexone.org/

Dan
03-17-2010, 09:49 PM   #12
theend2
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Hello D Bergy I never heard of LDN before. Thanks for posting the link I will have to go and read about it.
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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisone stops working ??? Now what ???
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