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Quite a bit of questions

Hello; I'm new to the forum, not sure this is the good spot to ask these questions, so if not, can you tell me where to put them, and how please,

I have a lot of question :

I am using azathioprine 150mg per day (3 times 50mg) started in december last year, and perfusions of infliximab 5mg/kg every 8 weeks, I weigh 67-72 kg

I have read online that you can go without any treatment if you eat specific foods, what do you think about that ? if thats the case do you have any books to advise ? or could anyone sum them up.

I read a thread that the treatment could work with only infliximab (without azathioprine), what do you think about that ? should I ask my doctor to try without ? do you have any alternatives ?

I read that azathioprine makes the chances of having a cancer higher for younger people, I am 17 turning 18 in november, is it a good idea to keep using it ?

How often do you have appointements with your doctor ? mine is about every 6 month it seems , when I go to the hospital every 8 weeks I talk with a doctor (its random, not always the same)

What does you doctor put in your blood test ? mine didn't put in blood sugar (
glycemia), I asked my aunt that is a doctor to give me a seperate prescription and was at 1.22 g/L in january, then 1.14 in march, and 1.05 2 days ago.

How often should you go to the dermatologist as azathioprine makes your chances of having skin cancer higher (how rigourous should they be ?)? couldn't they add tumour markers in the blood test by precaution ? are there any other exams that need to be done ?

I asked my doctor if food matters while having the treatment, she said no, what do you think ?

couple month ago had a 38 fever for more then a week but nothing showed up on the blood test, could the drugs hide an infection ?, also was always towards 36,2 temperature but after that I am often towards 37-37,2 any ideas why (asked one of the doctors at the hospital, she pretty much said its not important because its not a fever, for her a fever is over 38,3) ?, it could seem like I am paying a little to attention to my temperature but it was mostly consistant before

Also the doctor didn't tell me to take any precautions for covid, what is your opinion ?, I asked her to write me a paper to get exempt from sports class this past year because no one wears mask

Should I try another doctor ?

sorry for any mistakes in this message, I am from France, but believe the US is way more competent in crohns thats why I am asking these questions here.
Thanks for any answers you have
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Bonjour Victor ça va

What is your diagnosis? What are they treating with the meds, strictures? ulcers?

Azathioprine combined with infliximab is the most powerful medication for ibd, and they should be taken together to stop antibodies.

Sounds like your being treated with a top down approach.

I don't know the origin of this top down approach could be usa Canada I don't think it's Europe.

There are plenty on here who manage with diet and plenty who take meds.

I lived in France for a year it's a nice place to live with crohns, food wise.
Ca va bien maintenant, merci d'avoir demandé
Thanks for answering, near september last year I went to a gastro-enterologist then got an antero-IRM, said I had a small fistula in the anal region, after that did a colonoscopy, and found out I had ulcers in the big intestines and a little in the oesophagus (had a lot of aphthae in the throat in june but could eat after a week and after a month they dissapeared), last exam was a small intestines IRM, and same conclusion I have of ulcers in there. Starting november I took 3 times 50mg azathioprine per day and started a 2, 4, 8 week perfusion of infliximab (anti tnfa) in january, in addition to that I take Iron pills (doctor said it could be in the perfusion but I prefer it not to be) and folic acid
The thing is, if its top to bottom treatment, shouldn't I start having lower doses ? and does changing the diet work (no need for any meds) ?
would it be easier if I just send the typed exam conclusion papers ? would you be able to answer more of the questions I wrote above ?
Sure I will do my best to answer some more for you.

Regarding your skin, you should have a full body check each year, azathioprine effects the dna so even if you stop the drug you need to keep this check ongoing after.

Your on the highest dose of drug, I guess this discussion was made in order to get your disease under control and try and induce as much healing as possible.

Can you manage with food, I would not want to influence your decision in any way. First you need to get the crohn's under control to do this, and get good endoscopy and colonoscopy results. Deep remission.

There are stats about on chance of relapse e.t.c

However managing with food alone is very hard like a milatary operation and you have to be very strict, but you can use partial enn 25% elemental 028 or modulin ibd this would make it more easy.

Often getting and absorbing the correct nutrition helps huge in keeping maintenance of remission.

Crohns is like having an alien inside us, have to nurse it and keep it happy.

Top to bottom means give you the most powerful meds and try and get the disease under control.

This is a fairly new concept they used to start with the basic drugs and work the way up, what is the right way? They are still debating it and it's subject to change.

Should you be exempt from sports class, I don't know the answer to this, I would guess a lot of doctors also don't as the covid situation is so new. I think a lot of people immune supressd want a letter to not leave the house in general and wish there was many restrictions still in place.

My blood sugar never gets tested, and I'm not clued up on your results to comment.

I would also say you have a lot to look forward too, when I was diagnosed there was just a couple of meds and surgery, managing with food was the only way.

So many new meds are coming out soon and understanding of the disease and how to treat it, and technology to test what meds work best in what patient.

Right now there is maybe only ten meds, and there are guidelines to follow on what meds to give in what order and when you only have ten it's not much learning for doctors, it's hard to get a bad doctor but not impossible.

I guess when more meds come out they will rely on technology to test and direct, or you would need an out of this world doctor then.

I am also like you worry about the side effects from the medication so I get where your coming from.

I think most people don't worry so much however.

Some other members I'm sure will give there stance on your questions for you.

There is a book by Tracie Dalessandro you can check out.

This used to be given out in hospitals before biologics came out.

Crohns is strange however and people can eat different things without issues.
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my little penguin

Staff member
Going to tag a few parents for this one who have teenagers or young adults

typically once you start a biologic such as infliximab (remicade ) you don’t stop it unless it stops working or you have an allergic reaction .
The reason for this is there are very few biologics that can be used for crohns and once you stop using them unlike other drugs you can’t just restart them
Your body produces antibodies to the biolgic in this case infliximab and it doesn’t work anymore or causes an allergic reaction

most kids need more meds than adults
They just do
My child was diagnosed with crohns at age 7
And he is the same age as you (he is 17 almost 18)
He currently takes Stelara plus methotrexate to control his crohns and juvenile arthritis.

diet isn’t typically used as a therapy by itself to control crohns
For two reasons - people like to eat what they want and don’t follow them
Second the one proven diet is formula only (modulen or peptamen etc… ) which means no solid food .
Some kids use this instead of steriods when they are in a flare but not long term

if you have a treatment that is working for you that is the important thing
Not every treatment works

We were told to keep my kiddo on a Mediterranean diet as much as possible to help keep crohns in check in addition to medicine

some kids use methotrexate instead of aza as an add on to biologics
Some kids only need infliximab but not all
You would need to talk to your Gi and parents

dermatologist-my kiddo sees one once a year. Uses hats /long sieve swim shirts and zinc oxide at the beach avoiding sun between 12-3

He also sees a opthamologist (medical eye doctor ) once a year for uveitis and iritis checks

my little penguin

Staff member
Did want to add
Infliximab has an excellent track record of healing fistulas in crohns so that is a good thing

you can get this under control and be next to normal with the right meds soon .

My kiddo is evident of that (9 years in biologics including infliximab at age 8)
Your still at the beginning so it takes time to heal everything
I have a 19-year-old daughter who has Crohn's. She's been on Infliximab + methotrexate for about 7 years. She started at 5 mg/kg every 8 weeks, but she needed to go up to 7.5 mg/kg every 6 weeks to reach remission. She was on that dose for a long time but has been flaring lately and is now on 10 mg/kg every 4 weeks, which is the maximum dose you can normally use. So your current dose is actually low. Before your doctor would change anything about your treatment she would probably want to make sure that you're in remission, either by doing another IRM or checking your fecal calprotection (that's a stool test that checks for inflammation in your intestines).

My daughter doesn't get her blood sugar checked, but she does have a set of blood tests that are done every 3 months. They include inflammation markers like ESR and CRP, and 2 general blood tests called a complete blood count and a white blood cell differential. She also gets "nutrition labs" every 6 months that check levels of vitamins and minerals.

My daughter was very careful about Covid last year, but she will be going away to university this year now that she is vaccinated. Vaccinations and masks indoors are required at her school which we are happy about.
Thanks for all of your replies, a lot of helpful information

pdx how did a flare up happen ? can stress contribute (when I thought about it I had random pain near the big intestines maybe 4 years back but they were negligeable and not often, when I got into première in france (the second to last year of school before university), its when your grades becoming selective for the next 2 years (all your grades are looked at for your next school, so pretty much your future job) and thats when it started to become quite painfull (I waited a while before going to a doctor because I thought it was stress related pain)) ?

my little penguin how does the doctor select the first treatment ? why not try infliximab on its own and if it doesn't work add azathioprine ? in theory to go on a strict diet only, you need to be in full remission ? and its a hit or miss (no going back to the previous treatment) ? uveitis and iritis checks are for the treatment your child is taking, wouldn't be needed for me ?

[B]westernbuddy[/B] how much time does a full body check take ? in France the doctor did it in less then 5 minutes, my mother said when she did it in the US it was closer to a half an hour. Also thanks for the book reference.

Everything is mostly fine for me right now, only have some random pains in the stomach that don't happen often, most of my most bothering problems were solved when I started taking azathioprine last year( little blood and pain while being on the toilet stopped) before infliximab (started in january this year and pretty much all pain went away). Going to be seeing the doctor on tuesday (don't really have much confidence in the doctors in France (don't think they have specialised crohn's doctors here), my mother said that if I really wanted she could add me to her US health inssurance for next year (don't know if it will be usefull as inssurance don't really tend to work for pre existing conditions and wouldn't be an easy thing to be followed in the US), and father said university teachers/doctors are often up to date but not easy to get appointements with, but both parents don't know much about crohn's so not very helpful, have an aunt in the US that has crohn's but not much help as she has a bag/sac now). What bothers me the most is reading the medecin's notice and see all the side effects (thats why I would highly prefer doing without), thats why I will be waiting for a while before taking the covid shot.

my little penguin

Staff member
All crohns patients are at high risk of uveitis and iritis regardless of whether that take any meds or not
Seeing an eye doc once a year is strongly recommended
They start infliximab with an immunosuppressants such as aza or methotrexate to reduce the likelihood that antibodies will be formed against the biologic .
If you form antibodies the biologic is no longer effective .

Possible side effects listed for meds are just possible not given -most of the time people take meds every day from simple antibiotics (amoxicillin) ,fever reducers etc without reading the possible side effects
They do this because the benefits outweigh the risks
This is the same case for immunosuppressants/biologics -your doc feels the benefits of the drugs outweigh any possible risks

for example antibiotics such as amoxicillin used for a child’s ear infection has a risk of potential side effects such as death, liver failure abd Steven Johnson syndrome.

we take risks every day -we don’t think about them
Especially for children or young adults . Such as driving in a car or going swimming . Both have high risk .

Quality of life…
I can say for almost 10 years my kiddos colon looks great . No more damage -nice pink and healthy .
Diet will not heal a fistula
Please listen to your Gi . Get a second opinion Gi if you need to .

formula only is used in addition to immunosuppressants/biologics meds to get things under better control instead of using biologics with steriods

my little penguin

Staff member
Also add my kiddo has had the COVID shot (three doses per US CDC recommendations ) since he is immunocompromised due to biologics
This reduces his risk of getting very ill if he was to get COVID
He got the shots in April. /may and third shot in august
No issues whatsoever

please talk to your Gi about the need for the COVID vaccine
my little penguin
thanks for your answer, haven't seen my Gi since they started vaccinating younger people here, though the other Gi that sees me at most perfusions told me about 3 times to get vaccinated (I think she believes I am an anti-vaxer, but I answer that there are a lot of side effects and not a big enough sample of people that have crohn's it was tested on to have any certain conclusion), going to see my Gi on tuesday.

So I should ask my Gi for a prescription to get uveitis and iritis checks once a year ? will a second doctor really take the time to give a second opinion and look over all my test results if he is not going to follow me ?

In general I try to read all the meds side effect before I take any and also research them. I do some research on car accidents, scooter accidents, skying, same before I take an airplane (you feel safer when you see how many boing 777 have crashed in the last 3 decades), statistics can be interrresting.
To be honest I don't know how long a full body check takes.

I have never had one, I have never had azathioprine or any biologic so I don't come under that category to be monitored.

I have been offered azathioprine and infliximab in the past, but never accepted it.

And please don't take me as an advert for no drugs, I have an offer on the table now to take any biologic I wish and I'm debating it.

I have had 4 courses of steroids and 2 courses of total enn and 1 x surgey in my 25 years ish of crohns. Maintenance with partial enn.

I get what your saying about side effects this also freaks me out. Serious Infection and maligancies are the 2 big ones.

Regarding the vaccine I took the pfizer one, have you seen the technology behind it? The same technology may make crohns meds 80% safer.

I posted a thread about it in the other section.

Them guys are based by bethlehem and jerusalem and also helped with pfizer technology.

So to keep positive you may have heard a story about gold frankincense and myrrh and that location. In a famous book from history.

Frankincense and myrrh are also medicinal.
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HI agian and thanks for you previous answers. I saw my Gi yesterday she said that in France they give azathioprine to everyone in the begenning (it changed not long ago, before they wouldn't give it to everyone), she said I could maybe stop it after a year (towards december). Then she said that my infliximab concentration in the blood was to low so she wanted to put it at 10mg/kg (she said you need to hit crohn's strong in the beginning), I asked her if she could make it 7, she told me that she will ask a colleague's opinion, maybe if my next exams came back good it will be possible. I asked about a only diet treatment without medecine, she said it was impossible. She asked me how many vaccine doses I had, and then said I should get the vaccine. I asked her about uveitis and iritis checks, she told me no need if the eyes aren't red, should I still take eye exams by precaution ?

my little penguin

Staff member
Taking infliximab at a high dose does not increase the risks
If your levels are low your taking the risks of the medicine without the benefits
Your Gi wants to increase the dose to 10mg/kg to increase the level of medicine in your blood so you get the benefits as well

uvetis /iritis is checked if your eyes are red
But for my kiddo his Gi wants him checked as a precaution at least once a year by a medical doctor who specializes in eye disease

once things are under control for a while then they try to lower things down

most “kids” /young adults tend to need higher doses of the meds than older adults

I blame it on a very robust immune system which learns quickly

For reference my 17 year old is on Stelara at 90 mg every 4 weeks .
Normal dose for older adults is 90 mg every 8 weeks for crohns
my little penguin
thanks for your reply, it does seem that more doesn't make it more risky, in fact it would be better from what I read and what you told me, I won't bother my doctor with this then. If you know the answer or have a website link : how do they get the 10mg/kg maximum value that you can administer to someone ? and its also weird that secondary effect chances don't get higher when you up the concentration (didn't take much time to look for the info but have not found anything) would you have an explanation ?