Infliximab / remicade BE AWARE.

[dette]

infliximab / remicade BE AWARE.

:ywow: Ive had this treatment twice, once in 2008 and once in may this year.
Instead of it dampening down my immune system the second time it shut it off completely, i didnt know this and caught a cold after only being on it for 8 days. my body couldnt fight the cold and i developed seveer systemic sepsis withing 2 days of the first sniffle.

symptoms were normal cold like symptoms but developed into seveer chills and muscle/bone aching pains, i became crippled in a fetal position and within 24 hours couldnt even open my mouth. the cold took over everything mucus wise i couldnt cough , was hardly able to inhale/exhale and the infection took over my whole lymphatic system.

Blood gases were checked and showed toxic acidosis, IV antibiotics/ fluids and morphine given. I had acid burn in my nerves for three months afterwards, im still not right now

My GI specialist said i was just very unlucky, until then i wouldnt really have thought of myself as being lucky or unlucky.

IF you show any signs of seveer aches and cold like symptoms on a dose of this dont wait until you become bedridden. i didnt know it would have that effect on me i assumed it would be fine but i went into toxic shock really fast so dont mess about , keep your remicade/infliximab card with you AT ALL TIMES :ywow:

 

[Grumbletum]

Dette, hi and so sorry you had to go through this. Thanks for posting so that folks will know what to look out for. Was there a big gap between the first and second rounds of treatment? And where did you get your Remi/Infliximab card from? I was given one for steroids but that's all.
What are you on now you can't take the Remi?

 

[dette]

Hi Helen
To be honest i dont know where my consultant got my card from, i was given one on my first infusion back in 2008 and i dont have any idea where it came from.
My first infusion i did get a bad chest infection but after that cleared up with antibiotics i spent a wonderful 6 months with very little disease activity and no food intolerances.

The gastro quack told me there wasnt enough know about the drug for me to have more treatment.
This year i was ment to have another course of infliximab and the first infusion caused the side effects previously mentioned.

Now im on Budesonide , and elemental 028 diet to rest the bowel.

 

[lollypop]

hiya,
i to had infleximab infusions for a few months last year (2010) untill my 4th one which my body decided it didnt want so stopped working...i also didnt get the card you were talking about!!
ive been told i need to have a tube inserted into my tummy for feeds next month so i to can rest the bowel as the elemental diet im finding hard to stick to and every drug(steriods,infleximab,hermira,budesonide,methotrexate etc) dont seem to be doing anything..just wondered how is the diet working for you?!

 

[dette]

Hi lollypop

the diet is working quite well so far, ive managed to cut out food cravings by making sure i drink LOADS of water. that also seems to be having a really soothing effect on my tummy and my tail end isnt as sore from loo trips, in fact the more water i drink on the diet the less im going to the loo, im peeing more but my GI track seems to be remembering what its ment to be doing, so far so good!

 

[dette]

Ok so upon googling Remicade alert card, it is a card that should be given to EVERY patient recieving treatment and as recommended by the company making it should be carried by the patiant AT ALL TIMES...

REASON; if you go into systemic sepsis (which can occur at any point for any reason) you need the people treating you to be aware of how serious this treatment is and that it can kill you. Infliximab/remicade isnt well known and paramedics wont have a clue what to treat you with. a&e is the first port of call.
if you dont have a card insist on your next treatment that you are given one. Each treatment package of infliximab should come with a patient alart card.

I had a long gap between treatments, my cells adapted and the second treatment effected me in a totally different way to the first infusion.

BE AWARE of everything your body is telling you, if you feel more 'not right' than normal , dont think you're being a drama queen, get medical advice from a dr, they will more than likely refer you straight to A&E, it IS better to be safe than sorry

good luck, keep strong, and keep researching ♥x

 

[Grumbletum]

Thanks for that, Dette. I didn't get an alert card for Pred for ages, so got a bracelet and added the Remi etc as they were prescribed. But more people need to be aware that it's advisable to carry some sort of alert.

 

[rygon]

hmm thats strange the NACC doesnt say about carrying cards (and im sure thats where my nurse gets her info from as she printed their infliximab pages out for me to read before taking it) but the European Medicines Agency does

Patients who receive Remicade must be given the special alert card that summarises the safety information about the medicine.

 

[dette]

I just Googled Remicade alert card....
>>>>
Public Statement on Infliximab (Remicade): Update on Safety ...
www.ema.europa.eu/ema/index.jsp?curl=pages/news...jsp...
1 Feb 2002 – It is recommended that the conduct of these tests is recorded on the patient's alert card, which will be provided with the Remicade packages. ...
[PDF]
Remicade, INN-infliximab
www.ema.europa.eu/docs/en.../WC500050889.pdf
File Format: PDF/Adobe Acrobat - Quick View
The patient alert card, which is to be given to patients using Remicade. • That children may be at increased risk of developing infections and the need for ...
[PDF]
EMEA Public Statement on Infliximab (Remicade) Update on safety ...
www.sefh.es/alertas/infliximab.pdf
File Format: PDF/Adobe Acrobat
conduct of these tests is recorded on the patient's alert card, which will be provided with the Remicade packages. Prescribers are reminded of the risk of false ...
Remicade - European Drugs Reference Encyclopedia
www.theodora.com/drugs/eu/remicade.html
Patients who receive Remicade must be given the special alert card that summarises the safety information about the medicine. How does Remicade work? ...<<<<

These are the first few results that came up!

x

 

[dette]

post removed.

 

[stratford]

Of the drugs i took i only ever carried a card when i was on Steroids(Pred).
The day i was at my most scared about Crohn's was the day i was finally told what was actually wrong with me.I'd never heard of it.
I think it's good of you to be open about your experience.I dearly wish this forum had of been available to me many years ago.I've learnt so much from others on here.Other people being open about their experience has been a massive help to me.I can't thank them enough.

 

[Lisa]

I've never heard of being issued a drug card for pred or Remicade.....was on pred many. many, many times over the years....and been on Remicade for over 5 years now....think I may ask about that tomorrow when I go for my infusion!

 

[suschex]

post removed.

I'm sorry you erased your post. I am on Humira and it is not working...Remicade is next. I can tell you that I woul rather be well informed (even of rare cases) and a bit scared than uninformed and dead!

Thanks for sharing and I hope you are feeling better each day!

 

[Gue33]

I think it is worth mentioning that MedicAlert lists these both on their web site for who should have a MedicAlert membership. Immunosuppressants and Steroid therapy. I just started looking into it.

 

[dette]

ok , i found some of the info i looked up about infliximab after 'the incident'

http://www.medicines.org.uk/emc/medicine/3236#CLINICAL_PRECAUTIONS

It does give a very in depth account of side effects etc.

 

[dette]

section 4.8 of above summary of characteristics showed my side effects were actually a common result in clinical trials.

Thats why a doctor should be going through this to way up the pro's and con's with you.

 

[Mountaingem]

I always get a brief exam from the infusion nurse before they even order the Remicade. They ask about nose/throat, take temp, listen to my chest. Blood pressure, weight-I am careful about infusions when I don't feel well.

Thanks for the warning-very informative though I'm sorry you had such an aweful experience!

 

[moogie]

I got my Remi card the very first day I got my infusion. My card is a holder that I put my medical card we have in Canada. So whatever they do they get to see it. When I broke my leg I was in so much pain they put me under for a while and they got my card and remi warning. good thing too because i had my treatment the day before. It was in full force.

Never did get a card for Prednisone though.

 

[Lisa]

Just got to work after my infusion - I remembered to ask the nurse while I was there - and she has NEVER herad of the card - but she said she would ask the next time the rep. was out.

The doctor who was covering today did mention something about me getting a letter to keep with me -especially when I travel. Now, I have been on remicade since October 2005 and this is the FIRST TIME this has been mentioned!

 

[dette]

The doctors arent aware of these side effects in great detail , the reps for the companies making remicade/infliximab are different from company to company and also the research is still ongoing for the long term effects.

If you are looking at having a treatment that is fairly new and is such a serious drug, then you have to read as much as you possibly can on it, i didnt and i wish i had.

Also the treatment itself has to be administered by a trained proffessional. training comes from the companies that have made the batch that your hospital has ordered from, and each company will have specific legal obligations on what advice they give, ITS NOT OBLIGATORY to give medical alert cards apparently, but if you ask your medical proffessional im pretty sure they would understand the common sense behind the concern.

Looking on the bright side, WOW that a drug has been working so well for so many people!
Keep on keeping on! xx

 

[[email protected]]

Hello all!!! This is all soooo new to me...my son who is 13 was diagnosed with crohns in July last year. Was taking Modulin for 6 wks...that didnt work too well, he found it really hard to do. He is now on Mesren 3x daily and azathioprine. Got taken back in last wk, with a flare up, they wanted him to go back on the shakes but he realllllyyy wont do it. I am at a loss, any ideas, i would be really greatful to here from anyone who can relate to this???

 

[Document Doctor]

Remicade and Prednisone = Trouble!

Just wanted to relate my experience with Remicade last January--I had had surgery for a blockage and developed a stricture where the anastomosis was made. I was on high-dose prednisone after surgery, and Remicade was used in an effort to alleviate the inflammation that was causing the narrowing. Within a week of having my first infusion, I developed Bell's palsy and inner-ear problems, from a viral infection attacking my cranial nerves. One Remicade infusion was all it took! Subsequently, I have had only partial return of inner-ear function and facial muscle function. I would advise anyone taking prednisone or a derivative to avoid Remicade. The risk is not worth it.