Remicade gone bad

[summerflip]

ok so I have had remicade in the past (about 4 years ago) And then I stopped for a few years ago due to insurance issues and having a baby. Well I started the remicade again, but this time it's come with some side effects that have been concerning. during my second session (2 weeks after first) I all the sudden couldn't breathe easily, and felt like there was a truck parked on my cheSt. It went away after about 5 min, so I didn't tell anyone. That night I woke up at 1 am and couldn't move my arms or use my hands and my hips were also effected. It was the worst Joint pain/stiffness I have ever experienced, a lot like bad arthritis. I don't call my doc because it was gone after about 12 hours. I mentioned it t day, the joint pain that it, to my nurse before we started the remicade. She called my specialist to make sure he wanted to continue, and he said yes, as it may not have been from the remicade. Well half way through today treatment, the not being able to breathe, and lots of internal pressure started again. This time it started right ad the nurse was coming to take my bp. I told her I couldn't breathe and within a minute there were 5 nurses in my cubby, and oxygen thing in my nose, heart monitor on me, and a monitor for my oxygen levels, my remicade was immediately stopped, and my doc was called again. Symptoms went away again in about 5 min. I told them it happened last time and they scolded me for not telling them. Doc said to go to er to get checked out, but I feel well enough, I don think it's necessary.

I'm wondering if this has happened to anyone else, either instances. The nurses were trying to stay calm, but didn't do a good job at it, and them panicking made me panic,it was quit an ordeal.

 

[Clash]

It sounds as if you have built up antibodies which isn't rare if you stop remicade then start again. The same symptoms occurred when my son had to stop remicade for a while due to surgery. The GI should've ordered an antibodies levels test, if it comes back positive you'll need to stop the remicade. These reactions can become worse and even anaphylactic in nature.

 

[lookame]

It's always bad to stop Remicade and restart at a later date. It usually involves your body building up antibodies to the drug. as for my expirience, I was on Remicade for 2 yrs when I became pregnant. The first infusion after I found out I was pregnant I developed hives and I started having trouble breathing my infusion was stopped I was able to regain control and the infusion was started again and slowed down. The second infusion after pregnancy I developed much larger hives which extended to my throat (at least I think it became difficult to swollow and talk)the infusion was stopped and that was the end of my journey with Remicade.

 

[summerflip]

Thanks for the reply. It makes me feel like I'm not so crazy and like my body is betraying me haha

 

[Clash]

I would call the GI and ask for an antibodies levels test, you do not need to try remicade again until your antibody levels have been checked. Although, some people can have an allergic reaction to remicade without formed antibodies as well as vice versa some can have no reaction and still have high levels of antibodies.

 

[SupportiveMom]

I agree with Clash, don't get Remicade again. until you are tested. My kid was hospitalized because she had anaphylaxis reaction. She got tested for antibodies at her infusion because we suspected an issue. The infusion before she had a few hives, shortness of breath but that was about it. Even with benadryl, slow infusion & tylenol she had an issue at her last infusion. Shortness of breath, violently vommitting, and hives. She ended up losing consciousness. Hers was a sever reaction, one you don't want! I have never been so scared in all my life. Clinic was next door to the hospital thank goodness. Don't push it further. I doubt you would have my kid's reaction but you want to be sure!

 

[summerflip]

Supportive mom... I had all but the loss of consciousness. I wish so much that my specialist had said that any of these issues would have been something that could hAppen. I went into the treatments thinking everything would be as it was, but here I am with all these side effects (I hadn'tentitled the month of nausea aND inability to eat) and it turn out, it seems to be common. I'm losing faith in my specialist, and will be rescheduling my u of m appointment. This is an illness I've had for 11 years, and I've never let it ruin my attitude, but I have to admit, I'm feeling a little overwhelmed at the moment

 

[dave13]

The Prometheus test is the test for antibodies. It is basically blood work sent to a lab in California,they do there tests,and let you know if you are building up antibodies. I had it done recently.

 

[lookame]

You can develop these things at any point. you can go consistently every 8 weeks for years and have little to no reaction then one day you go in and start having a reaction. it's worse when you stop for a long period of time then go back to it.

 

[MommieW]

I developed the breathing issue too, plus hives with my final two infusions. My GI didn't even order the antibody test. He just said he didn't feel comfortable with me taking Remi any longer and took me off. Sadly, it was the only drug that ever really gave me much relief.

 

[my little penguin]

It sounds like an allergic drug reaction
These can happen with any medicine you take and are more likely to happen with remicade after it has been stopped for a while.
Your doc wanted you in the ER for a reason
Anaphylatiod reaction can progress or get worse within the first 4-6 hours after a reaction ( known as a biphasic reaction ).
The ER would have been able to monitor you and treat it quickly before it progressed.
Anaphylaxis can be deadly quickly .
Which is why most docs will not continue with remicade after a reaction since the reaction may not be able to be stopped in time .

Here are the signs of anaphylaxis which should be reported to your doctor immediately /call 9-1-1
DS has had anaphylaxis before requiring an epipen .
It is not something to wait around for not is it sonething where you are thinking straight during
Most adults will think they are fine even if their blood pressure is low.

 

[my little penguin]

Symptoms
Symptoms of anaphylaxis typically start within 5 to 30 minutes of coming into contact with the allergen to which you are allergic. In some cases it may take more than an hour for you to notice anaphylactic symptoms.
Warning signs typically affect more than one part of the body and may include:
• Red rash, with hives/welts, that is usually itchy
• Swollen throat or swollen areas of the body
• Wheezing
• Passing out
• Chest tightness
• Trouble breathing
• Hoarse voice
• Trouble swallowing
• Vomiting
• Diarrhea
• Stomach cramping
• Pale or red color to the face and body
• Feeling of impending doom

From
http://www.aaaai.org/conditions-and-treatments/allergies/anaphylaxis.aspx

 

[summerflip]

I developed the breathing issue too, plus hives with my final two infusions. My GI didn't even order the antibody test. He just said he didn't feel comfortable with me taking Remi any longer and took me off. Sadly, it was the only drug that ever really gave me much relief.

Remicade has so far been the only thing that's worked also. I however have not tried too many different things yet

 

[summerflip]

From
http://www.aaaai.org/conditions-and-treatments/allergies/anaphylaxis.aspx

I am glad that I did not have anything happen from not going to the er. I know I should have now, the nurse that relayed the message was like "I don't think you really need to go, you're stable now, and it wasn't too bad. It's up to you though" having three kids and no one to pick them up from school, I took the nurses advice over the dr.