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My 15 yr old son was diagnosed 3-4 months ago after having weight loss and stomach pains for months.  He had colonoscopy and endoscopy which confirmed Crohns.  He was put on sulfasalasine and entocort which didn’t help much.  Then prednisone in place of entocort which has helped him to feel better but the Dr wants him to go on Remicade.  My son has a phobia of needles (very bad-he’s fainted getting a shot) so he really doesn’t want the Remicade infusions.  The Dr suggested methotrexate by pill once a week, but he’d still need lab work quite often so he can’t get away from needles.  I’ve been researching the drugs and the side effects of both scare me!  Does he really need one of these?  He hasn’t been gaining any weight, he’s still anemic and going to the bathroom a lot so I know he’s not in remission.  I guess I’m just worried about what all these drugs will do to him.  Would a diet change work or are drugs the best and quickest way to get him feeling better?  After reading some posts I see positive things about Remicade but not much about methotrexate.  Any thoughts?

Reply posted for Coop555.

Thanks for all the information from everyone.  Since I last posted my son has started to wean off prednisone.  We’ve seen a doctor/nutritionist who is into more natural remedies.  My son has been on high doses of liquid turmeric, a heavy duty probiotic, digestive enzymes and SBI Protect for immune health.  He’s also on iron still.  We’re trying to go gluten free but starting slow.  Not easy for a teenage boy so just starting with small changes here and there.

Recent test results were pretty good.  Inflammation tests were normal!  No longer anemic.  Vitamin D was low but not surprising.  We live in MN so not much sun here now!

Next step is to see if gastro Dr still recommends remicade.  We will pursue that if needed.  He passed out getting his last blood test so the needle phobia isn’t getting better.  But it won’t stop us from biologics-if needed.  Hes doing pretty well now so I honestly don’t know if it was the prednisone or the other supplements and dietary changes.  Will find out soon after prednisone all done if he goes back to feeling worse or not.

Good luck to everyone dealing with this disease.  It’s hard not knowing what to do but it helps hearing others experiences.

Reply posted for Coop555.

You should keep an eye on the anemia.  I passed so much blood in my stool became severely anemic.  I had to get blood transfusions.  Eventually three pints per month.  Had a total of 23 units. I was exhausted all the time.

Reply posted for Coop555.

I think if you don’t deal with the needle phobia you may never get a handle on this disease. So much of the treatment involves blood draws and infusions.  So many people respond differently to various treatments.  Some posting here have had good results with remicade.  I didn’t, and I’m not having any luck with entyvio.  But others do. You may have to try several biologics to find one that works.  It would be a shame if you missed out on a drug that worked great for your boy all because he doesn’t like needles.

Reply posted for Coop555.

Have you thought about enteral therapy? May be worth looking into.

Reply posted for Coop555.

Hi Coop,

Very sorry to hear about your sons diagnosis, especially at such a young age.  It was difficult for me the get my diagnosis as an adult of 44, I cant imagine the amount of maturity it would take for a 15 year old.

I've had a similar experience to AmyL.  Remicade has been much much better for me than methotrexate and the steroids I was on before Remicade.

In my case, I was initally on 12mg of Remicade which is what I required to feel the effects, I felt ok, however, I felt dizzy and tired often.  My ND suggested that I cut down on the Remicade and also take a supplement that she recommended.  I ran this by my doctor who indicated it was worth a shot.  Since then I've been on 5mg of Remicade plus the supplement for the last year and that combination has proven very helpful for me.

-Ann

Reply posted for Coop555.

Hello,

If your son decides to go on Remicade, advise him to drink plenty of water to stay hydrated before they infuse him.  I drink a bottle of water in the morning right before I have my infusion, thus it makes the IV go smoother.
I am currently on 10mg. and feel a lot better.  I've had 5 infusions and no problems so far. (knock on wood!)

JB 

Reply posted for Coop555.

As far as diet, I am still hoping a more natural treatment approach will be shown effective at some point.  My teenage son saw a nutritionalist, who said no foods cause or change the course of the disease.  However, there is so much info out there that suggests inflammatory foods, and the need to change our gut biome to be balanced.  I have to believe diet CAN have an influence on it.  The other challenge may be getting your son to eat within those guidelines, as they are quite limiting.  (my son is not to a point he is willing to try that hard yet).  But it is scary, the thoughts of what medications do to the body in the long run.  I totally relate with you...I wish you guys well.

Reply posted for Amylbrew.

What side affects did Methotrexate have for you? my son is 6 1/2 and has UC  The pentasa isnt keeping him in remission so we are looking at a new immune modifier before going to biologics. Any info would help even though i understand theere are differences in each specific situaiton

thanks 
A Mom

Reply posted for Coop555.

Hi, I have been having remicade for almost 10 years. I was diagnosed at 17 years old and they tried me on methotrexate and mercaptopurine for a few weeks but the side effects were awful. They then put me on remicade and honestly it's been my wonder drug. No side effects. I gained weight as I was just 4stone 12 at diagnosis. It gave me back my quality of life. As for the needle phobia I'm sure in the end he'll get there. Unfortunately you get used to becoming a pin cushion. If you want to ask me any questions then feel free x