REPORT ON FIRST INFUSION OF REMICADE (100mg IN... - Behçet's UK

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REPORT ON FIRST INFUSION OF REMICADE (100mg INFUSION). HERE IS WHAT IT WAS LIKE.

sneakyblonde profile image
sneakyblonde

WOW! I HAVE A LOT OF PEOPLE THAT LIKED MY POST AND ARE NOW FOLLOWING ME! I GUESS YOU ALL WANT TO KNOW WHAT TO EXPECT IF YOU GET REMICADE OR AN INFUSION.

Hi Everyone,

Well, I had my first infusion on Thursday Oct. 5th. (Next one is Oct 19th, then Nov. 30th.)

It went well, the staff is very kind and even with tiny veins that roll, collapse and blow out, they got it started in one stick. The infusion took about 2 hours, I was given 600 mg Tylenol (acetomeniphen) and 25mg of Benadryl, (difenhydromen). They wanted to give me 50mg but I refused. I took a book, snacks and a soda. Plus a blanket. I slept, because benedryl knocked me out.

I had some Trigeminal Neuralgia for a day or two after and felt a bit blah for a couple of days. I don't know if it was because of the REMICADE, or weather changes we have had. (I am very sensitive to falling Barometer changes. I know I will go "belly up, in pain, in my recliner!")

Today, I don't feel any better or worse than I have. I hoped it would help the arthritis. There are reports of just one infusion- helping spondyolitis. But I guess not in my case.

I hope being a "lab rat" for REMICADE infusions and reporting here, answers any questions you may have about what to expect, if you are going to receive infusions. I will do my best to answer any questions anyone has.

Please remember, I have a very bad case of Neuro Bechet's, with all the rare and worst symptoms possible. While I did not get noticeable results after my first infusion - you possibly could. Maybe just my telling you about telling my doctors, "I Quit!" Will help some of you stand up for your rights as patients and demand that your doctors do something, anything - to help you.

There are only about 10,000 cases of Bechet's in the USA, many less Neuro Bechet's cases. So, doctors don't know what to do, when there is little research and it is old and out of date. Plus, very small studies, because it is so rare.

Meanwhile, I am happy to be a "lab rat" and report back to all of you, in hopes you learn through my experiences.

Bechet's affects everyone differently, the symptoms and severity are as different as the people affected by it. My experiences will not be the same as yours, but you might learn, if something is new to you, like infusions. What to expect the procedure to be like, and not be nervous or afraid of the unknown. I am honest, open and approachable. If it were "the worst thing ever done to me", I would be honest and tell all of you why I thought it was so bad. (Maybe if it is a fear of needles, that made a "Spinal Tap" seem much worse and awful, when it really isn't that bad if you aren't afraid of needles.) Then, you can judge for yourself, an individual, with your fear or lack of fear for certain things.

(I have sent some private messages to a few of you, that were afraid of your first MRI, or other things. I hope my input helped put you at ease.

That is all for now. I will answer any questions and post any changes, if I start feeling any different, or after my next infusion.

I wish you all good health,

Cindy

11 Replies

Hi i have been on remicade for 7 years,so it is not a new treatment.

I have also been on these infusions for nearly 4 years

Hi everyone,

To those of you that messaged me, I know Remicade is not new!

But like me, many people have never been infused - with anything. I thought talking about my own experience would help other readers.

I did not know I would get other meds with it, or how long it would take. Here is where we share what we learn, to help others.

Thanks!

Cindy

hi I'm on a clinical trial at the moment just started it I have inflexitab in fusions think that's the name iseems to be working first time in a year I haven't had ulcers for a week other symptoms are the same but its early days I will follow your treatment with intrest like you I don't mind being a lab rat as It may help others as we;;

hi hope every thing goes well for you I have just started a clinical trial I'm from the uk doc told me there are fewer than a thousand cases of this horrible illness like you ive told them I will try anything to help me and possibly it may help others my first infusion seems promising reguarding the ulcers but the rest are the same usual pain ect bloody horrible so I will fo;;ow your posts with intrest and hope it helps you

Thanks,and good luck to you!

There are only about 10,000 BEHCET'S cases in the U.S., and much fewer Neuro BEHCET'S

Ooops, wrong button.

Of that 10,000, a few have Neuro BEHCET'S.

I not only have Neuro BEHCET'S, I have all the "worst and rare symptoms" you can have. Plus, complications.

I also have 3 genetic diseases to complicate the whole mess.

I hope the trial are the new drugs and you improve!

Good luck and good health to you.

Cindy

Hi Cindy my name is curly I get infusion called infliximab and islaprost just the last 6 month and it’s best I’ve felt in 9 years ask about it or look it up take care x

Hi Cindy curly here again I just looked up the stuff your on and it’s the same just diff name but remicade and infliximab are the same I’m on dose 6 and it’s starting to make diff with me so fingers crossed hope it works for you I also get islaprost infusion ever 12 wks too

If everyone realized it IS NOT as rare as they think it is, accurate and earlier diagnosis would be made. When it's assumed it's rare, it's not considered.

They say you start to feel benefit after first 5 it takes time to get into system I felt differently after 3rd one in process of comin of azathioprine so will be able to tell you more after a few wks how are you feeling now you must be on does 7-8 by now Cindy I’m curly by way x

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