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I am going to Remicade!
#149745 07/18/09 05:28 PM
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In a week and a half my dr is putting me on Remicade infusions. I will go on vacation the end of the same week. Please let me know anything that will help to go along with this treatment and even while on vacation, just in case there are side effects or problems. I am hoping and praying I will be able to walk and not have to use the wheel chair. Thanks!

Re: I am going to Remicade!
Jean Angel #149786 07/19/09 01:07 AM
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Okay guys-I am not going to let you not answer me. Those of you that have been on Remicade let me know. Thanks a bunch!!

Re: I am going to Remicade!
Jean Angel #149810 07/19/09 03:09 AM
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Jean,

Sorry for not replying right away. I've been using Remicade now for over two years. The infusion itself will go fairly slow especially as it's your first one. They usually recommend an antihistamine the morning of and tylenol at time of infusion for possible headache during or right after the infusion. I've only had an issue a couple of times---not serious at all and no problems afterwards.

The very first infusion I received was marvelous. I played kickball with my kids a few days afterwards. Things are much different now, but I'm so much better with the Remicade.

Good luck AND have a wonderful vacation. smile

Elaine


But hope still breathes and truth is always true.
And just when we think it’s almost over
Love has the final move
Re: I am going to Remicade!
Jean Angel #149826 07/19/09 04:27 AM
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Dear Jean Angel
I have been on remicade now since 2003 my first few times left me feeling like i had the flu i wish you the best it has worked very well for me good luck


"The Faces of Ankylosing Spondylitis" http://facesofas.com
Re: I am going to Remicade!
Jean Angel #149876 07/19/09 03:40 PM
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Remicade overall has been fantastic. I just started early this year so we were ramping up (bolus) and I would feel great and then it would wear off and symptoms would start to return. We are "tweaking" it so we are trying every 5 weeks because at 6 the symptoms return. (we are trying the interval change instead of a dosage change) So it may take awhile to get to the right levels so that it stays consistent.

In terms of the infusion--most of the time it's been a great experience--I have had one nurse who does not do the best job with getting the needle in--(rest are fine, just this one...). Go in well hydrated and if they have trouble, they can put a heating pad on the blood vessel to help it open up--that helps a lot!

I had tylenol, a bag of steroids, a bag of benedryl and then the remicade the first few times to make sure I was not allergic. Now I'm down to the tylenol and oral benedryl and then the bag of remicade. It took FOREVER the first few times because they were giving me more stuff and were slower with the remicade to make sure there was not a reaction--definitely bring something to do--I also love having my ipod to listen to.

Hope it works for you as well as it has for me--despite the need to tweak the times and figure that out, the remicade has given me my life back smile

Re: I am going to Remicade!
auntielala #149893 07/19/09 05:27 PM
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Not had any biologics yet, but I sure hope they give you some relief! I forget if you have tried any of the others?





37, Female, Psoriatic Spondylitis
www.charliefoulkes.com
Re: I am going to Remicade!
Jean Angel #149897 07/19/09 05:45 PM
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I hope it helps you Jean, and that you can make the most of your vacation.



Rach

"Knowledge is power" - Francis Bacon
"Try all things, and hold on to that which is good" - Thomas Jefferson
Re: I am going to Remicade!
Rach #149934 07/19/09 09:11 PM
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Been on it for about 4 years. The first few infusions left me feeling VERY sleepy and achy for about 4 days after the infusion. The infusions are uneventful and long. If they do mine in less than 3 hours, I get a dull headache that lasts almost a week. So if you get a lasting headache, ask to have the infusion extended. I've gotten good results with remicade. I no longer get sleepy after the infusions, but still am achy for about 2 days. Afterwards I feel pretty good except for constant chronic SI joint pain that it doesn't seem to touch.


Lisa K.
"Attitude is everything"
Re: I am going to Remicade!
Merlin #149971 07/20/09 01:57 AM
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Thanks for your comments-I so appreciate it. I am looking for ward to beginning the Remicade-have been going down fast this past year and not walking well. Maybe this will give me hope-thanks-


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