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So I have been on Remicade for a while now and i love it!! I love going to the hospital and seeing the people who care about me a lot. But i've been in a flare up for a while now and it hasn't put me in remission. But now my mom wants me to switch to Humira and i don't want to. I would love for input on anything that helps with you guys so i can stay on Remicade. Any idea helps and i'm open to anything. Please reply ASAP.

Thanks,
Alissa
 
How long is awhile? Sometimes it can take a bit for it to kick in. Also what dose are you on? If they have you on the 5mg/kg they can up you to 10mg/kg. I loved remicade when I was on it too. ALways a good nap day.
 
How long have you been on remicade? Have your remicade levels been tested? Have you been tested for antibodies? Has the GI upped your dose of remicade or shortened the schedule between doses?

There are immunosuppressive meds like 6mp, imuran or methotrexate that can be added to your med regimen to help you reach remission.

Some pediatric patients also do exclusive enteral nutrition (formula only or sometimes 80% formula 20%food) for a time(anywhere from 6 to 12 weeks) to help you reach remission.

Entocort(non systemic steroid) can be added for a time to help you get to remission then tapered off.
 
i have been on Remicade for about 2 years now.i am at 10mg/kg. they said the levels were fine and they took me off 6mp to put me on remicade. they said they havent found antibodies yet but they're looking for some.
i will ask my doctor about some of the things you suggested Clash.
Thank you for the advice that you gave.
 
What are your flare up symptoms? I would think that your doctor would look into either adding another medication or changing medications if what you are taking is not controlling things.....
 
my symptoms are
- stomach pain
-abdominal pain
- strangely lower back pain
thats about all. but they come in big waves of pain about 5-10 min each
 
Good Day Alissa,
Sorry you have to be on Remicade.
Good for you asking serious questions and...
I like your positive attitude!

I am not a doctor but I am a sick guy who reads about it a lot!

My thoughts on those two biologics in question, may differ from others.
I have been on Remicade infusions and currently do weekly Humira.
For me, I have as yet to achieve remission of my Crohn's disease.

Some thoughts on why I personally stuck with Remi as long as I could:

Most of us develop antibodies to these drugs over time,
particularly if we stop taking them.
Those antibodies render the drug less effective or even ineffective over time.
A point to consider is that once we stop a specific biologic,
there is a strong chance we cannot ever take advantage of that drug again.
I like to think of it as... "you cannot go back to Remi".

Another point is that yes there are hopeful things happening
in research into understanding & treatments for inflammatory bowel disease.
I am not trying to sound bleak or be bleak.
Any ostriches who would like to stick their head in the sand,
do so now!

There are only so many bullets in the current medical gun against IBD.
IBD does a range of damage, but the deep end is both dark & deep.
Myself I have a surgeon waiting to take all of my large intestine,
my rectum and my anus due to accumulating damage from active disease.
I am trying to say that the stakes are high for some with IBD.
It is certainly an adversary I respect always & fear sometimes.

which brings me to my second point not to voluntarily switch off of Remi
for another biologic.
It is prudent to fully explore each drug as much as possible...
to inform our treatment strategy moving forward.

The quicker we cross-off possible treatment,
the fewer options remain for us.

so if you quit Remi, assume you probably cannot go back.
there are currently only a handful of biologics being used for IBD.
Remi and Humi are the most known and first two biggies.
Cimzia is another.
We just do not have enough treatment options on the top shelf for IBD.
No hurry to burn those options quicker than possible for us personally.

My third thought on biologics is that Remi & Humi, when they work,
do so with the same body mechanism. (TNFa blockers)
Stats & opinions vary on this as well as many aspects of IBD treatment.
My current evolved take on it is they have many similarities,
and work in the same way, and so I am slow to accept...
that TNFa blocker #1 is gonna outshine TNFa blocker #2.
I have done much personal research and that is my informed opinion.
Your mileage can, will and should differ.
Each case of IBD is individual & different.
Each must do their own homework to find the best-path-through.

Read many sources of info and make your own decisions as best you can.
Guidance from adults who-care-about-you and medical professionals
can assist you to make good & wise choices moving forward.
The severity of our personal version of disease can vary over time.
Just because things seem mild or perhaps manageable now,
is no assurance things will stay that way for us.

Crohn's disease is a big deal, even if many around you do not seem to see it.
Best do your homework and then teach your Mom lot's of facts about IBD!

Speaking only for myself, as an informed adult...
I would not think it wise nor feel comfortable switching biologics...
until clearly not working over a large sample of time,
or as in my personal case, Remi gave me Lupus and needed quick stop.
I would not jump drugs without it being a medical neccessity,
because we only have a handful of the biggest IBD drugs,
which have helped plenty of people enjoy better quality lives!

I remain hopeful that new treatments & drugs are being developed.
Weekly Humira has not brought me into remission so far,
but I keep my spirits up and my fingers quietly crossed.

I am proud of you, in asking these questions.
More importantly, I hope you feel proud of yourself!
good show and good luck to you,
peace
Walt

ps
I wish you only well!
:D
 
Dear Walt,

Thank you so much for all the information. I must say i'm not very good with words and had to look up a lot of the things you said, but that being said, i now learned a lot of new words.

I'm so sorry that you have not yet reached remission. I hope you get there soon.

I will be doing my research on all the options and be consulting with my mom and my doctor. I will also have them take into consideration all of your informed adultness part of your responce.

Thank you all for the responces. i well be showing this to my mom and asking for other chances to stay on remi
 
Options
Have you tried EEN (formula only no food ) to boost remicade abd stop the flare until remi takes over
Lower back pain could be spondyloarthritis which flares sometimes on its own and sometimes when your Gi tract flares
Tagging maya142

I can say my kiddo had to stop remicade due to two allergic reactions after 8 months
But has been on humira for the past 3.5 years


Enteropathic (en-ter-o-path-ic) arthritis is a form of chronic, inflammatory arthritis associated with the occurrence of an inflammatory bowel disease (IBD), the two best-known types of which are ulcerative colitis and Crohn's disease. About one in five people with Crohn's or ulcerative colitis will develop enteropathic arthritis.

The most common areas affected by enteropathic arthritis are inflammation of the peripheral (limb) joints, as well as the abdominal pain and possibly bloody diarrhea associated with the IBD component of the disease. In some cases, the entire spine can become involved as well.


From

https://www.spondylitis.org/Learn-About-Spondyloarthritis/Enteropathic-Arthritis
Good luck
 
I was on Remicade for 3 years then lost response and then went on Humira. If you are in a flare up then you have built up antibodies to Remicade and it won't work anymore for you. Try switching to Humira, I was on it for 3 years as well then lost response to it as well. But in total both drugs gave me 6 years of remission. Hope you find the right answers
 
Thank you all for your input. I will bring up all of these options with my doctor and see which one she finds the best solution for me. I thank you all for being so helpful and supportive. I will do my best to try all these solutions, but in the mean time, is there anything you guys use ,like lotions or certain tea's or anything else, please let me know so i may try them until i can get an appointment with my doctor.

Thank you so much for all that you have given me to try!!
 
Exclusive enteral nutrition
Your doctor prescribes you to drink boost shakes , ensure shakes , peptamen or peptide complete nutrition .
My kiddo did this for 9 weeks .
He drank 8 peptamen Jr a day and was not permitted to eat any food.
 
Alissa - have you ever been checked for other issues such as kidney stones? And as already mentioned, back/spine issues can be common too.

Do you have GI symptoms along with the pain you mentioned? If only pain, I would be sure to explore other possible causes for you being in pain before switching from Remicade.

Personally I would try to explore as many different options as far as controlling your current symptoms without going off Remicade because if it is working to help control the IBD symptoms I'd want to stay on it as long as possible before switching medications.
 
Alissa - have you ever been checked for other issues such as kidney stones? And as already mentioned, back/spine issues can be common too.

Do you have GI symptoms along with the pain you mentioned? If only pain, I would be sure to explore other possible causes for you being in pain before switching from Remicade.

Personally I would try to explore as many different options as far as controlling your current symptoms without going off Remicade because if it is working to help control the IBD symptoms I'd want to stay on it as long as possible before switching medications.

Agree
 
i'll check it out with my doctor. i will see what i can do about the drink. Thank you all for your ideas and support.
 
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