Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications #2 Remicade infusion

First I want to thank everyone for the welcome!

Just hade my second Remicade infusion last Friday (3 days ago). Everything went OK. About half way through, suddenly I got a bad chill like the temp dropped 20 degrees F! . Was back to normal when it was time to leave. Anyone else have this happen with Remicade?

Sometimes day or night I ache mostly from the waste down. Especially my ankles. I asked the doc about it and he said it wouldn't..But it's only been happening since I started Remicade. But then again he's the one who told me no one has had any side effects from it (here anyways).
I've seen some posts here ppl saying feels like they're getting a cold.
Sometimes I sort of feel like that. The nurse who gave it to me said some ppl say its like they're getting the flu. Maybe that's the ache.

I haven't had any positive effects from it yet.Maybe in another week or so. Probably everyone is different.
be patient, be patient!
Todd

Hi Todd!

I am hoping to be able to start Remicade myself in the near future. I've be doing some web research and found this listed under known side-effects for Remicade.

Side effects such as low or high blood pressure, chest pain, difficulty breathing, rash, itching, fever and chills may occur during or shortly after administration. These reactions could indicate an allergy to the drug. They are more common among patients who develop antibodies to infliximab and are less likely to occur in patients who are taking drugs that suppress the immune system, such as methotrexate. Infliximab should be discontinued if serious reactions occur.

Since you have experienced a chill during the infusion, I'd keep your eye out for other possible signs that may indicate an allergy and be sure to continue making your doctor aware, should it happen again.

However, this link talks about the same reaction and doesn't make it sound too worrisome, but it might be worth while reading, or printing out to discuss with your doc: http://www.rxlist.com/cgi/generic3/infliximab_ad.htm

I'll be interested in hearing more of how this med works out for you, and certainly wish you the very best success!

mig

Hi, I just had my 3rd infusion about 2 weeks ago...just saw your post. Are you on the Zantac/Zyrtec regime pre and post infusion? That may help...my doc put me on it because I have several allergies....I ache almost every day (all over sometimes) but mostly from the waist down. I don't think it's from the Remicade, I think its because the rm. isn't working that well...but I have noticed that the last two fingers and last two toes will go numb if I sit in one position for even a short time and this is AFTER I started the infusions....has this happened to you or anyone else?

Aimee

Hi Aimee
I haven't had any problems with my fingers or toes. But since taking Remicade I've been aching from the waste down a lot, mostly when I go to bed. Keeps me awake for hours! It just might be I got arthritis in my knees and ankles now.
I had my third infusion 4 weeks ago. I don't realy think the Remicade is doing much for me. I see my rheumy in September so I'll find out then maybe. The doc who is looking after my infusions only been giving me 3 mg/ KG, but my rhuemy prescribed me 5 mg/KG. Might be why it isn't doing much.
I thought it was clearing up my psoriasis, but now its coming back.
What's the Zantac/Zyrte regime" ? I get benadryl and tylenol before the infusion.

Hope you make out better than me with the Remicade!

Later, Todd

That is interesting about the aching...hhmmnn. Have to keep an eye on that one. I am on 400 mgs an infusion (is that right? it's 400 something!), but I was NOT taking mtx with it because I thought it was bothering my eyes, saw doc today, going to try it again at a lower dose. 12 mgs via injection, so hope it helps. The z/z thing is I just take a zantac and a zyrtec once a day for three days prior, and three days post, benadryl is probably just the substitute for the zyrtec (probably better, as zyrtec makes me want to rip a car door off sometimes!), not sure about the tylenol. Let's keep in touch about the remicade, my next infusion is Sept 28th, how bout you?
Aimee

Scott, Aimee, Hallie, Caitlyn and Gabriel

Hi just read you post and I had my very first Infliximab Remicade infusion yesterday and I was asked if I was haveing any reactions I responed I felt hot, which was discounted as it was a blazing heatwave outside , I also reported that the two smaller fingers on my right hand were tingling and a little numb also which the Doctor Also Disscounted as nobody had reported it before. SO WE HAVE A SAME REACTION .

My Infusion yesterday took nearly 2 1/ 2 hours to complete I read on the net it takes 40 minutes , my Infliximab cost Australian Taxpayers close to AUD$ 5000.00 but cost me AUD$ 4.60, I told my friends that the Medication was free but the Government had the Audacity to charge me AUD$ $4.80 for the Band Aid , LoL , one of my friends who totally missed the point said I could have brought a packet of Band Aids cheaper than what I had paid .

Anyway what do you think of the Infusion are you any more pain Free as so far I am not impressed I dont feel any different but I don't feel any worse.

Have a Happy Day

Chris

:Such is Life", last words of Bush ranger Ned Kelly just before they hung him

Hi Chris

Sorry to hear the Remicade (yet) hasn't been the miracle cure it has been for me.

I've been on Remicade for a year and a half now. 24 hrs after my first infusion I was completely pain free and has been ever since. My ESR and CRP levels, which used to be constantly very high, dropped to almost inmeasureable levels.

The first five infusions I had, took 2 hrs for the Remicade (200 mg) and then topped off with 1 hr saline solution. Now I take the Remicade in 45-60 mins and no saline drip. I'm also on a low dosage of Methotrexate (pills), which is standard practice in Sweden, where I live.

Take care

Mattias

Hi Chris,

I am about to have my first Remicade infusion on Friday at R.M.H.

Where did you have yours ?

My Doc tells me the first few times it should be over at least 2hrs so you don't get a bad reaction and until your body gets used to it.

This is from the Vic Gov site: (6448J Powder for I.V. infusion 100 mg 1 $875.00 Remicade SH ) so at 5mg per kg thats works out at $875 each 20kg so if you weigh 100kg like me thats $4,375.00.

I hope it works soon.
Adriaan

Hi Aimee I have last week had my second Infusion of Remicade and yes my two small fingers on my right hand are numb and tingling also but not my toes as i live in Southern Hemisphere it must be a Hemisphere thing, I saw my Rhuemos last week and told them I am still in immense pain and their bloody drug is not working they replied by ordering another appointment for a third Infusion.

Chris

:Such is Life", last words of Legendary Bush Ranger Ned Kelly just before they hung him

Hi Todd,
I never felt any benefit from taking Remicade until after my 3rd infusion, but then had to stop after my 4th, due to raised ALT's (uncommon side affect), but listed apparently.

After stopping Remicade for six months I'm now back on it again, half dose ervery six weeks (100mg), I'm due for my second infusion in two weeks time.

I'm taking Remicade on compassionate grounds, as the NHS wouldn't or couldn't fund my treatment. I have a good Rheumy & he wrote to the drugs company directly.

The main possible side affects that I have experienced are, raised ALT's, slight saw throat & cold like symptoms. At the moment have been experiencing jaw/ear ache for around three weeks which may or may not be due to the Remicade.

Think around 70% of people whilst on Remicade feel some positve benefits & at the same time a SMALL percentage of people have experienced serious side affects or died whilst on Remicade. Report all potential side affects to your Rheumy dept.

Most drugs don't come without risks & everything must be considerd, reducing disease progression must also be a positive.

Take care.

George.