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#145386 - 06/07/09 07:15 AM Remicade how long has anyone been on it?
mika Offline
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Registered: 06/07/09
Posts: 3
My husband has been on Remicade now for about 5 years, it has seemed to help until recently so he told his rheumy and he said well lets stop. Try the epidural injections. They did nothing but give him more pain. Now he is in a full flare and has to go back on Remicade. I could kill his rheumy for letting him go 3 months without an anti inflammatory. Anyone been on Remicade for more than 5 years?
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#145407 - 06/07/09 05:52 PM Re: Remicade how long has anyone been on it? [Re: mika]
TennisAce Online
Registered Visitor


Registered: 09/19/05
Posts: 1063
Loc: Boston, Ma.
Might want to post this on the main board
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Daughter diagnosed 2004; son diagnosed 2006. One takes a mix on pharma: sulfa, naproxyn and celebrex. The other one is clinical remission at the moment and not taking any drugs currently.

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#145411 - 06/07/09 06:22 PM Re: Remicade how long has anyone been on it? [Re: TennisAce]
Merlin Offline
Registered Visitor


Registered: 01/24/07
Posts: 2542
Loc: Florida
I've been on it for four years. I have months where it doesn't seem to work great, then other months where it is wonderful. I sometimes wonder if there are inconsistencies in the manufacturing process causing this.
_________________________
Lisa K.
"Attitude is everything"

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#145590 - 06/09/09 08:30 AM Re: Remicade how long has anyone been on it? [Re: Merlin]
greenshampoo Offline
Registered Visitor


Registered: 01/18/07
Posts: 1197
Loc: Pennsylvania
I have been on it for about four years also. I am discovering that it is not working as well, my rhuemy is considering Enbrel. I have a post on the main board to see what others think on this subject.

Tess
_________________________
Some of the best things come from Author Unknown.

When the world says, "Give up," hope whispers, "Try it one more time."

Though you can't go back and start again, you can start from now and have a brand new end.

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#151324 - 07/30/09 10:08 AM Re: Remicade how long has anyone been on it? [Re: greenshampoo]
Jason Coleman Offline
Registered Visitor


Registered: 02/21/05
Posts: 47
Loc: Kansas City, Ks
I have been on it since March of 05. Still going strong
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#151367 - 07/30/09 05:48 PM Re: Remicade how long has anyone been on it? [Re: Jason Coleman]
LilMsCookie Offline
Registered Visitor


Registered: 07/05/09
Posts: 516
Loc: Texas
I have been on it since March 2003 had my last infusion yesterday
_________________________
Cookie....I have learned the hard way that courage isn't always a roar; sometimes it is a soft whisper at the end of the day saying i will try again tomorrow. May each new sunset bring you peace and comfort and each new sunrise offer you a day of hope. Remember don't add up your troubles, only count your blessings! Life isn't about how to survive the storm, but how to dance in the rain
A = Always
S = Supporting

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#151446 - 07/31/09 04:56 AM Re: Remicade how long has anyone been on it? [Re: LilMsCookie]
Merlin Offline
Registered Visitor


Registered: 01/24/07
Posts: 2542
Loc: Florida
Seems like it takes about 4 days after the infusion for my joints and back to stop hurting. I get about 3 weeks relief from it, and the last week is a decline in feeling good. Is it the same for you guys? I get infusions every 4 weeks, so I can't go any sooner, and I'm at the max of 10mg. How do you know when to switch to another TNF? The 3 weeks I get of relief are really good. It is just the last week and the 4 days post infusion that aren't great.
_________________________
Lisa K.
"Attitude is everything"

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#153841 - 08/26/09 10:41 PM Re: Remicade how long has anyone been on it? [Re: Merlin]
steph Offline
Registered Visitor


Registered: 08/26/09
Posts: 5
Hi. I am new to this. I have felt bad and had pain for about 10 years, but dismised it to being over active. I am a 35 year old female with two boys, ages 11 and 13. The rheumatologist just told me 2 days ago that I had AS. I have some damage to my spine, neck and peripheral joints that he said is irreversable, but he wants me to start Remicade immediately. I am depressed, shocked and confused. I have done so much research on the internet, but I dont know what to do. My Dr. said I have some fusion allready in my lower back, sacreilisomething, and hands and feet. He says my neck, C1and C2 show signs of fusion. I dont mean to be a bother, but this is so new to me, and I really dont know where to turn or what to do. Should I take the remicade? Should I seek a second opinion? Thank you for your advice if u have any. Any information will be greatly appreciated. My e-mail is samnortonfam@att.net. Thank you if u can help me or advise me in any way.
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#154515 - 09/03/09 05:48 PM Re: Remicade how long has anyone been on it? [Re: steph]
KellyChristal Offline
Registered Visitor


Registered: 10/06/08
Posts: 1931
Loc: San Antonio, TX
If you are fusing and having pain, you should do whatever you can to stop any further damage. If your rheumy suggested remicade, then give it a go...unfortunately it does not work for everyone, but for some it is a miracle drug. Did he not try to put you on an NSAID to start off with?
_________________________
if you change your thinking,
you can change your life ♥

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#155946 - 09/15/09 09:00 PM Re: Remicade how long has anyone been on it? [Re: KellyChristal]
dempkid Offline
Registered Visitor


Registered: 07/12/09
Posts: 2
Simponi actually works the same for me...I get the one injection every four weeks....the 3 weeks are great the last week is a decline and I start to see swelling in my right knee and ankle and my back starts to hurt...
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