Stupid question, but...

[hannah-rose]

So far google has been my holy grail for crohn's research (and this forum too), but I think I'm a bit confused about something.

My doctor said something about infliximab/remicade last time I saw him, so I've been googling away. Now, I can see people on here talking about side effects, but I can't seem to find info on any side effects other than the immediate risk of an allergic reaction.

If you lovely people could be so kind and helpful I'd really like to know:

• What are the immediate/short term side-effects of Remicade/Infliximab?
• Have people died of these reactions?
• Are there are long-term side-effects?
• Are there any cancer risks?
• Are there any other side-effects I should worry about/how dangerous is this drug really?

Thank you so much I really appreciate your help

Hannah x

 

[bruscar]

Hi Hannah,

I had two infusions and no side effects at all, but i still ended up having surgery !

not much help sorry

 

[Misty-Eyed]

Ooohhh I can show you the right info as I look at this stuff all day for work!

The European Agency says this about the risks;

'Most side effects seen in patients taking Remicade are related to the infusion and not to the medicine itself, including dyspnoea (breathlessness), urticaria (hives) and headache. Some patients can experience anaphylactic shock (a severe allergic reaction) during infusion, or delayed hypersensitivity (allergic reaction after the first exposure to the medicine). Patients experiencing these symptoms should have their infusion slowed down or treatment interrupted.

The most common side effects with Remicade (seen in between 1 and 10 patients in 100) are viral infections (such as flu or cold sores), serum sickness-like reactions (including skin rash, joint pain or fever), headache, vertigo (dizziness), flushing, upper respiratory tract infection (colds), lower respiratory tract infection (such as bronchitis or pneumonia), dyspnoea, sinusitis (inflammation of the sinuses), nausea (feeling sick), diarrhoea, abdominal (tummy) pain, dyspepsia (heartburn), rash, pruritus (itching), urticaria, increased sweating, dry skin, fatigue (tiredness), chest pain, fever and elevated liver enzymes in the blood. Some side effects, including infections, may be more common in children than in adults. For the full list of all side effects reported with Remicade, see the Package Leaflet.

Remicade should not be used in patients who have experienced hypersensitivity (allergy) to infliximab in the past, or who are hypersensitive (allergic) to mouse proteins or any of the other ingredients of Remicade. Remicade must not be used in patients with tuberculosis, other severe infections, or moderate or severe heart failure (an inability of the heart to pump enough blood around the body).'

Which can be found here on their website;
http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/000240/human_med_001023.jsp&murl=menus/medicines/medicines.jsp&mid=WC0b01ac058001d125&jsenabled=true

But if you'd like to read about the side effects and results of studies done on them then you can find them in this document;
http://www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Information/human/000240/WC500050888.pdf

You'll want to read section 4.8 Undesirable effects on page 11. It's a really interesting document if you want to see all the background on the product (unless it's just me because I'm a nerd!)

If you don't want to read all of it, then the package leaflet which you don't usually get to read if you're having an infusion is on page 42.

Hope this helps and isn't overloading you with information lol

 

[bruscar]

Full marks Misty !! . . . .you can have tomorrow off . . . . !

regards

Bruscar

 

[Misty-Eyed]

Thanks bruscar, but I already have it off as it's Sunday!

I'd also add that the EMA only approve drugs they see as being effective enough and that the benefits outweigh the risks for the disease they are indicated for. They are so picky about these things that I certainly trust their judgement.

Hope it helps!

 

[Meredith]

Hi all
Just buttin in to this conversation. I have had many Remicade infusions and my Main side effect is next day extreme joint pain. My fingers contract and I can barely walk. It only lasts for a day though. It's awful but it's way better than a Crohns flare up so I'll take the lesser of the two evils. I try something different each time ( before) my infusion hoping that my joints won't hurt (I.e. Taking aleve, dexamethasone,etc) but nothing helps. I just find it weird that people take Remicade for rheumatoid arthritis, seems like it's giving me arthritis. Also, the first time I took it I had a lot of trouble breathing felt like an elephant was sitting on my chest,but, they slowed down the infusion and that took care of it! So far Remicade has been my life saver. I love it!

 

[Pirate]

Ditto what Meredith said other then my joint pain starts about 5-7 days after the infusion and lasts about 5 days. It has been great for me, no pre-meds or any of the above side effects.

 

[hannah-rose]

Wow Misty that's amazing! I'm not going to need a doctor with you providing all that information seriously though that's so helpful, when I go to my next GI appointment my aim is to freak him out with how much i know lol.

I'm going to have a thorough read of all that stuff so I'm fully informed. I asked a friend about Remicade too because I wondered why people took steroids with their multitude of side effects when this drug seems to be much safer but he said it's because it's so expensive and it stops working after a while because your body builds up an immunity to it. Sucks eh?

 

[Pirate]

Hannah, that is the attitude you need. Get every bit of information about Crohns and its treatments you can. Be pro-active in your health and what will be done to your body.

Knock the socks of your Dr. with your knowledge.

 

[Misty-Eyed]

Glad you found it useful! Happy reading!

 

[Ktomakin]

My 4 year old son has been on Remicade since Oct 2010, he receives it every 8 weeks with no side effects at all, he is given tylenol and benedryl before every infusion. And it helps with all his Crohns symptoms!
http://ccfa.org/info/treatment/biologics This website has some useful information too.
Hope this helps! Good luck!

 

[hannah-rose]

Thanks guys

 

[Mishpoka]

Remicaide reaction

I googled remicaide reaction and came up with this thread. I then imediately enrolled. My Crohns, in remission for about 30 years, came back last July. I was finally given remicaide on 12/23/10 My 4th Remicaide infusion resulted in incredible pain. I had a reaction during the infusion of hives. Before each infusion, I take two claritan and tylenol. I also take a xanax as I like to sleep through the 3. to 4 hour infusion. As i broke out in hives about an hour into it, they hung a bag on benedryl.When that was done they continued the infusion. Within 7 days my joints were incredibly painful. I couldn't open my hands, my jaw was really sore. All of my joints were infected. (I have had broken ribs it didn't hurt this bad) The infusion was on 3/30 I still have the symptoms that started 6 days after the infusion. I was given 4 days of prednison 40mgs. It didn't touch it. They sent me to a rheumatologist. The tests came back all elevated. No one knows how to treat this. Has anyone had luck with anything? How long does this last? BTW my PCP told me my next Remicaide would be fatal. I have no idea what's next. I'm not doing anything until I have a flair up I am so scared.