Need advice

[dfyang123]

Hi everyone,
My name is Difei, actually I'm the mother of a 20 year old son who was diagnosed Crohn's disease 2 years ago. He was first put on Lialda 2 tablets a day, after one year, was put on 4 tablets a day, recently his Colonoscopy showed he still have mild to moderate active Crohn,so doctor is thinking to switch to other medicine like immune suppressors or Infliximab type medicine like Remicade, after I did some research, I'm very scared the side effects of those medicines. The thing is since the first flared up, my son is totally symptom free for the last 2 years, only the colonoscopy showed the inflammation, so I really hesitate to let my son take those medicines. I also want to know, if the Lialda failed, can he take other mesalamine medicines? Will other this type of anti-inflammation drugs work? if anyone has experience of this, please let me know.
Doctor also told once my son gets to next level of the medicine, he can't get off it, he will always on it, which makes me nervous. Excuse my English, this is my second language, hope I expressed myself clear. Thank you!

 

[nitty]

Hello.

Please don't be too afraid of the drugs and their side-effects. You can frighten yourself even reading the leaflet in a packet of painkillers! Yes, the next stage of drugs is a significant step, but it will be necessary if your son still has inflammation.

Just because he has no outward symptoms now, it is almost inevitable that years of chronic inflammation will eventually have serious consequences. I reassure myself that the side-effects of the drugs are not as bad as the eventual 'side-effects' of untreated disease. There are many on this forum who will have personal experience of this.

I'm not sure that it is strictly true that your son can never stop the meds. Some people are able to achieve remission and then reduce their medications drastically, if not totally, and continue to live their lives with well-controlled Crohn's.

I think the key points are that sometimes the stronger drugs are vital in order to stamp down inflammation, and then if remission is achieved to a level of being able to stop the drugs, it must followed up with regular monitoring to make sure the inflammation doesn't creep back.

You will find loads of information on this forum, but please also remember that many people are here for advice when they are having problems so the balance of thread topics can be a bit worrying. However, there are also massive numbers of Crohnies out there who are managing their condition well and getting on with wonderful lives.

Best wishes for you and your son.

 

[Scipio]

One thing to remember about side effects is that drug manufacturers are required by FDA to list every single adverse event that was observed during the course of the clinical trials, no matter that it may not have been caused by the drug nor how rare the occurrence was. Thus if something bad happened even once to one of the thousands of patients in one of the clinical trials, that bad thing will be included along with everything else in the long list of side effects.

The main side effects to actually worry about are those that have been reported to occur fairly frequently. For those the risk of the side effect needs to be balanced against the benefit of controlling the Crohn's. If the benefit outweighs the risk (and it often does which is why the drug is useful in the first place), then it's a good idea to take the drug. This is a discussion for your son to have with his doctor - so they can come to a mutual decision of the best path forward.

 

[2010mustang]

I was diagnosed severe crohns disease in april. I too started with lialda and presnisone. Niether worked for me. In july i went to humira and some more prednisone. I was able to get some of the inflation under control but it wasnt enough for remission. I am now on remicade,mtx,folic acid,gabapentin and prednisone. The remicade and pred for my crohns and the others are for my arthritis pain. Like others said if 1 person has anything happen related or not it gets listed. The majority of use will have little to no side effects. Id inflimation is left it will cause alot more problems in the future, so it is very important to get it under control.

 

[Clash]

^Agreed with all above.

Never associate lack of symptoms with everything being ok. My son has been asymptomatic for 2 years and yet the disease rages on. His disease after being asymptomatic near 2 years required surgery. No pain, no D, no cramping, could eat without symptoms, full time school, friends and active social life but inside there was a small area that was so ulcerated and fissured that without surgery had the potential to perforate. This disease can be insidious and silent.

The stronger meds aren't working for my son right now. Even after surgery and a new biologic we are facing the spread of his disease, still with no symptoms except some anemia. The meds seemed really scary for me too but the fear of these meds not working and his disease progressing is far more fearful to me at this point.

 

[Ian_H]

Hi everyone,
My name is Difei, actually I'm the mother of a 20 year old son who was diagnosed Crohn's disease 2 years ago. He was first put on Lialda 2 tablets a day, after one year, was put on 4 tablets a day, recently his Colonoscopy showed he still have mild to moderate active Crohn,so doctor is thinking to switch to other medicine like immune suppressors or Infliximab type medicine like Remicade, after I did some research, I'm very scared the side effects of those medicines. The thing is since the first flared up, my son is totally symptom free for the last 2 years, only the colonoscopy showed the inflammation, so I really hesitate to let my son take those medicines. I also want to know, if the Lialda failed, can he take other mesalamine medicines? Will other this type of anti-inflammation drugs work? if anyone has experience of this, please let me know.
Doctor also told once my son gets to next level of the medicine, he can't get off it, he will always on it, which makes me nervous. Excuse my English, this is my second language, hope I expressed myself clear. Thank you!

Hello!

I have had luck with mesalamines based drugs (Pentasa,Apriso), but currently am on remicade and Imuran. Dont let the side effects scare you. I was nervous before Remicade but stopping Chronic inflammation is much better than the possible side effects of the drugs. If you can keep inflammation down thats the goal!

Good Luck!! We are thinking of you guys!

 

[dfyang123]

Thank you all for replying my thread, I feel much better now, I love this community, wish you all well!