Remicade what to expect

** Originally posted by timlovett **

Ok as many of you know I start remicade tommorow.. I have been anticipating this for a while and am desperate for some relief.... I decided to take my laptop and blog here during my infusion. So this is the start of that thread. Does anyone know what I can expect ? Will the first day make me tired ? Will I get sick ? Or will it just be like the injections and done once the needle comes out ?

C ya tommorow.

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19 replies. Join the discussion

** Originally posted by candi_baby22 **

Tim I'm rooting for you! I can't say much on the subject but I really hope this provides you with lasting relief. <3 Keep us posted!

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** Originally posted by timlovett **

Thanks Candi... this is long overdue.. not having the money to do it has kept me from getting remicade. I am nervous but also anxious in a good way about tommorow. I thought it might be neat to report whats going on in this forum during the infusion.

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** Originally posted by Ranger05 **

Well, personally i don't know what to expect, but i do have a friend who recently started Remicade for UC. He say's after his infusion he has a slight headache for a few days afterwards. Other then that, he reports no side effects. Good luck tomorrow! 1pm, i'll be thinking about ya.

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** Originally posted by candi_baby22 **

its so unfortunate that finances have to play such a huge part in getting the medication that can provide relief :(

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** Originally posted by Flycaster **

Good luck, Tim.

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** Originally posted by lisaann **

During my first Remicade - I was okay. I ate a good meal and made sure I had plenty of coffee. Full stomach. I did it first thing in the morning. I felt a little queezy but over all okay.

During the 2nd Remicade I was completely fine during... I read on here what happened to other people. I went outside which happened to be 100+ out there plus pure sun. I got a mild headache, and felt drained kind of like I had not slept in 2 days... The moment I got home I got a subway sandwich and felt completely better...

I get my 3rd one in a few weeks...

I can't wait to see how you do... I felt instant relief after the first one. My knee pain and neck completely disappeared. That part was a blessing... (My feet swelled up since but little pain...)

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** Originally posted by candi_baby22 **

Hey Tim! I hope everything is going well, keep us posted as to how things went!!

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** Originally posted by Kentucky_Girl **

can't wait to hear tim. hope it's smooth sailing!

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** Originally posted by timlovett **

Ok well they didnt have internet access so I wasnt able to blog during my infusion.. but I have to say it went really well.. I actually fell asleep so all I remember is them giving me a shot I think steroid of some type then handing me a benadryl pill and I took it and talked for a bit then fell asleep...


I dont have any side effects to speak of and I go back and do it again in two weeks... Wow not as bad as I thought ...actually was really nervous over nothing....

Thanks everyone I appreciate your support I hope this stuff does the trick...

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** Originally posted by Ranger05 **

That's awsome Tim! I've been hanging out on here waiting to hear how it went. Glad it went well and I hope it kicks in soon!

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** Originally posted by lisaann **

I have to take my little one with me - but yes... If I did not have her with I would sleep the whole time away... It is actually reallllllllllllly hard not to fall asleep... LOL! Glad it went well...

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** Originally posted by timlovett **

Yeah I came home updated you guys then fell back to sleep... it really zaps ya at first huh... I have big expectations for this he also put me on 2.5 mg of prednisone per day... so my hard is calling on me to clean it up lol... good night guys talk to you all tommorow.

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** Originally posted by heidi **

I am glad everything went well Tim.

I get my first infussion as soon as insurance approves it.

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** Originally posted by mcarden **

I had my Remicade infusion yesterday as well. Fortunately for me, the company that handles it ONLY does 'in-home' infussion. So, after they get the line started (always an issue-- my veins are deep, roll and have a lot of valves that tend to make lines positional), I recline on the couch in the family room, and turn on the TV and generally doze off, or chat with the nurse (always the same one, so that's nice). Got to handle a couple of con-calls etc...

HOWEVER- I am always worn out after- just zapped of energy. Yesterday I had just dozed off when my daughter in-law and my 2 yo grand-daughter showed up... and of course I HAD to play with the granddaughter! Ended up she stayed for dinner, my wife and I watched the granddaughter and my daughter-in-law and daughter went up to Children's Hospital to see my youngest grandson.

By 10:30 the girls had not gotten back from Children's so my oldest son came over after he got off work, and he and I ended up discussing his next deploy (he is a Marine reservist) and he then started showing me some comedy on You-Tube that he and his buddies are doing.

Bottom-line I FINALLY ended up getting to bed at midnight, forgot to set my alarm and ended up not getting to work until after 10 am this morning... I am certainly feeling better physically, but still drained energy wise... but spending time with my granddaughter was well worth it.

I have noticed that after having been on Remicade for 7 months now, that the week before the infussions I do have increased discomfort in my joints-- so I can tell at least that it IS working--since I can tell when it is wearing off..

Keep us posted with how you do on your next infussion...

Stay away from sick people, and always where a mask if you have to go to an ER or Hospital to visit anyone or to your Primary's Physicians office (in the waiting room- lots of sick people at times). It seems like a little thing, but I am pretty sure that (wearing a mask in high risk environments), and good hand washing, has helped me personally avoid catching the common colds, flu's etc, that we can more easily get from the immunosuppression. (Yes I did get an abcessed cyst, but thats a different thing...)

Take care...

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** Originally posted by timlovett **

Well its Sunday so its been four days since my first remicade infusion. Some of you might remember me talking about problems in my prostate area. Turns out the last time I past kidney stones I got some sort of infection. Well the PA seems to be doing better allready with the remicade and the prednisone... But its also making me realize how bad my prostate/kidney infection had gotten.

So my pcp had me on doxycycline which unfortunately gives me really bad vertigo and other negative side effects. But again the pain in that area really seems to aggrevate the PA quite a bit. So I am drinking cranberry juice by the jug and taking some flomax until I can get an antibiotic my body will tolerate.

I feel like once I get rid of this infection I am going to do a 100 percent turn around health wise.

Keeping my fingers crossed.

Tim.

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** Originally posted by susan7733 **

I started on Remicade in Feb. After amazing results with the initial 3 treatments I found my psoriasis flaring up very badly. They increased the dosage to 400 mg- same thing. Now this time they will up it to 500 mg. Meanwhile for the first time ever my liver enzymes have gone up. Rheumatologist says its the Zocor I take- and the internist thinks its the Remicade. Battle of the Drs.
I've stopped the cholesterol medication and will have another blood test in 4 weeks - which will tell if its the Zocor. Anyone else have elevated liver enzymes with Remicade? And if so- what did they do about it?

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** Originally posted by RichJ **

hi susan,
im sorry that i can't help much but welcome to the p family. you have meet some of the wonderful people on here and will find alot of great info. welcome and nice to meet you.

try and have a good day all

richard

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** Originally posted by heidi **

Welcome Susan.

Tim glad things are looking up.


First time getting remicaid were you all okay to drive yourself.

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** Originally posted by susan7733 **

Thanks for the big welcome everyone!

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