Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Remicade

Thanks everyone for sharing your experiences with Remicade. It is now put on hold for me because I am pregnant. In fact, I am not on any arthritis meds at the moment, and I am enjoying having a normal tummy again.

However, I am on blood thinners and Baby Aspirin daily, which I think is helping the generalized stiffness.

Shari

Mattias,
Just curious - do you know why they used to give you a bag of saline after the infusion? I never got that, neither did my sister.

Nina

Hi Nina,

I also get the saline for about 45 mins (included as part of the 3.5 hrs) following the Remicade. Just by coincidence, I happened to ask the nurse last time I was there, what the reason is for it.

She said that it was just a simple precaution - the time is used to observe in case of an allergic reaction, and should I experience one, then with the saline still hooked up it will allow them to counter it swiftly.

They just like leaving needles stuck in us, I think.

Hope you are well.
mig

Thanks for the explanation Mig; that makes sense. I had to sit with the needle in for some additional time, but no drip. Glad I didn't get additional fluids, though - the Remicade drip used to make me pee several times during the drip, and I'd always get entangled in the IV line or button it into my pants. Oh well, that's a bit beside the topic.

Humira is working very well, which I particularly notice while being temporarily off it. The symptoms came back pretty quickly and the bloodwork shot up.

Have you stopped getting dizzy after the infusions now?

Nina

Hi Nina

I guess Mig had the answer. I never actually got an explanation as to why the saline, but I too had to stay for an hour after the Remicade infusion finished (for the first five times), to check for reactions. But they did tell me that this was a procedure that didn't happen everywhere and I think they don't do it anymore.

/Mattias

Hi Nina,

Nope, I don't get dizzy during or after the infusions anymore. I feel pretty normal during the day of and after the treatments now.

Unforunately, I'm getting a dizzy nauseous sensation on and off on a daily basis over the last few weeks, that is quite unpleasant and I can't figure out. It comes in big waves immediately after any activity, so even with a lack of pain attached, I'm nervous again about moving too much. I mowed my tiny little backyard yesterday and that turned out to be a huge mistake. At first I thought I was not drinking enough fluids but have ruled that out. It does improve quite dramtically after eating, but eating is difficult when you feel so woozy. Gravol doesn't help either, so I don't think it's vertigo, which I also suspected. Since it feels very similar to jet lag, I now think it might be as basic as a lack of sleep. I've been quite the insomniac since starting Remicade and can't fall asleep even when exhausted. Makes no sense. Pain level is lower than low, so I'm just praying it's not the med.

I loved your description on the washroom escapades! It is easy to get all tangled up. lol I've been drinking water ahead of time too, since they want me plumping up my veins that apparently are annoyingly tiny for the IV nurse. All adds up to too many liquids.

So nice to hear that Humira is still working for you so well! I hope it keeps up.

Hugs,
mig

Hi Mattias,

When I first started it took even longer - about 4.5 hrs, I think. I sure hope after a while they'll shorten mine like they have yours! It's nice to relax but sure takes a big chunk out of the day. I get the impression that Sweden is always a bit ahead of the game. I'll keep my fingers crossed that we will follow suit.

It gives me such hope hearing that it's still working for you after 2 years.
Take care,
mig

Nina, Mattias & Mig last time I had my infusion the nurse started it off at 15ml\hr so i said this is a bit slow and was told we now have to follow the Remicade guide lines. I asked to see the guide lines and she showed me a booklet it was put out by Remicade for hospitals and was printed in 2002. It had the rates which start at 15ml\hr for the first 15min then 30ml\hr for the next 15min and so on and also had all patients should remain for 1hr after to monitor any side affects. There was a woman across from me and she has been on remicade for 3 years and this was the first time she had to stay after the infusion go figure.

Adriaan

Interesting Adriaan. I suspect there have been some local guidelines developed in different hospitals/countries. In the EU version of the "Summary of product characteristics" for Remicade it says: "Administer the infusion over a period of not less than 2 hours (at no more than 2 ml/min)." and it also says: "All patients administered Remicade are to be observed for at least 1-2 hours post infusion for acute infusion related reactions." Summary of Product Characteristic

The first time I had the one hour variant, I had to fill out a questionnaire, to verify I didn't suffer any reactions due to the fast infusion rate.

/Mattias

my doc said 2 hours... eventually about every 6 weeks. i'm in the process of getting it approved by insurance. i'd love to hear more... i'm agoraphobic (panic attacks) and could do it on my own for 2 hours, but will have to be medicated and have someone go with me if it's much longer than that.

my rumy has a place to infuse at his clinic... maybe that's why it's quicker???

squishy hugs,
teddi