Remicade question

[kyoung02]

My son has had 3 Remicade treatments so far since being diagnosed with crohns 3 months ago. Still doubling over with severe cramp. Can anyone give me advice on what has worked for you with severe cramps? He is not eating much at all. I'm worried Remicade is not going to work. I hear it is the best treatment for crohns, but what would be next if it does not work?

 

[Tesscorm]

I'm not sure re the cramps... heating pad, rest... it's not something that my son dealt with.

Re remicade and other meds. There is a lot of trial and error with crohns. While remicade is a great treatment option, it's not necessarily the right one for everyone. Another biologic would be humira. Often immunosuppressants are added to the biologic - 6MP, azathioprine, etc. (These are also tried on their own.) Sometimes remi needs a boost get into remission - CIC's daughter added six weeks of exclusive enteral nutrition when she was on remicade. The EEN helped push her into remission and she has remained there for a long while now. Steroids may also be used to help move to remission. But, neither EEN nor steroids are typically used as a maintenance med on their own.

But, before moving on to another med, you may need to give remi a bit more time.

:ghug:

 

[CarolinAlaska]

My daughter has never been cramp free, although her scopes are good. They can prescribe antispasmodics like Bentyl. My daughter rests, uses a heating pad, also uses an essential oil blend called Digestzen, which she has had good luck with.

 

[kyoung02]

I have used the digestzen. It works for a while and then the cramps start back. Heating pad seems to help some. These cramps are so insane. I can't stand to see him doubled over in pain and it totally makes him freak out. Crying and panicking. When they are so severe I have had them ask about his heart rate being so high in the ER. I would think its the stress his body is going through? Wouldn't it make sense to have a high heart rate at that time or am I missing something?

 

[CarolinAlaska]

I have used the digestzen. It works for a while and then the cramps start back. Heating pad seems to help some. These cramps are so insane. I can't stand to see him doubled over in pain and it totally makes him freak out. Crying and panicking. When they are so severe I have had them ask about his heart rate being so high in the ER. I would think its the stress his body is going through? Wouldn't it make sense to have a high heart rate at that time or am I missing something?

How high is high? What is his resting heart rate when he isn't in pain?

 

[kyoung02]

Maybe 135. I have seen it go up to 170. It usually around mid 90's I think.

 

[pdx]

While some kids do respond to Remicade quickly, for many it takes up to 6 months to start working. You may need to increase the frequency or dose--your doctor can do a Remicade levels test to see if that is needed. Here is a thread that I started after my daughter was still very sick after 3 doses of Remicade. There are a lot of really helpful replies.

http://www.crohnsforum.com/showthread.php?t=70795

In my daughter's case, we ended up increasing frequency first (to every 6 weeks) and then upped the dose to 7 mg/kg a few months later, after a second levels test. Her doctor also added methotrexate, along with having her use EEN and budesonide for 2 months, to help with her inflammation until the Remicade kicked in. The EEN in particular really helped with her abdominal pain, so you might consider that.

Now, after a year, my daughter is doing really well on just Remicade and MTX. Hang in there!

 

[Maya142]

My daughter had a high heart rate for quite a while. In her case, her cardiologist did some tests (Holter monitor and echo) and determined that it was just the stress of a chronic disease on her body. Hers was normally above 100 - about 110 and would go up to the 140s or even higher.

She is doing better and it has gone down. It's still not normal, but it's better.

For cramps we just used a heating pad. Hang in there - it took 4 infusions before Remicade really worked for my daughter. We also had to increase the dose and frequency.

 

[CarolinAlaska]

Some people with autonomic dysfunction have Crohn's. I'd keep an eye on the heart rate and have him tell you when he feels his heart is racing. If it becomes a regular thing, perhaps he should see a cardiologist to have it evaluated.

 

[kyoung02]

Thank you for that link. I will check it out. His doctor doesn't seem to want to mix drugs together. She says there is a higher rate of lymphoma when you start mixing. My guess is if Remicade doesn't work, she will take him off and start something else. She had started tweeking the dosage and treatment dates. Hopefully this will help. I guess I'm just impatient and frustrated.

 

[crohnsinct]

My daughter was on steroids when she started Remicade and the doc didn't start the taper until she had her 4th dose. Unfortunately, every time we tried to taper, symptoms returned. 4 months in, we needed to get her off steroids so added EEN to give Remicade a boost for a while and then at the 6 month mark Remicade was able to do it's thing. A year later we added Methotrexate.

Is he on anything else to bridge him to the point of Remicade effectiveness? Steroids? EEN?

Levels testing is suggested after the 4th dose to see how a person is metabolizing the medicine and to help find the optimal dose and scheduling. Also to check on antibodies and to see if there is adequate dose but no response identify non responders. Everyone's disease load and metabolism is different so while 5mg/kg every 8 weeks may work for some, another may need 10mg/kg every 5 weeks. BTW - these dose and schedule changes occur pretty regularly for patients as their disease load lessens or their activity level changes etc.

 

[kyoung02]

This is great info. Thank you all!

 

[kyoung02]

He is on prednisone. Actually weaning him off now.

 

[crohnsinct]

Ahhh...you may have to slow the taper down. That's what we had to do...snails pace.

 

[Catherine]

Is the pain getting worse with pred taper? Have you let the Gi know?