symptom free, are meds necessary?

Oh, Just to say that I fully support the course of methy pred but not sure why he needs to be on meds all the time as he was well without them, having not had any in May/June before taking Mesalazine.

I understand that it is not at all unusual for children to go into remission for a number of years.  I was not diagnosed until my 30's and, in the beginning, had periods of remmission that lasted months to a few years.  During this period, I was on "maintanance" medications like sulfa drugs, Asacol and 6mp.  As I got older, the disease became more chronic and could only be controlled by drugs like prednisone and Remicade.

It seems to me that my doctor held off on prednisone until really needed.  The first time I took prednisone it worked well.  The next time not so well.  My doctor would not go for a third round as (I guess) he suspected it would not work very well.  I would save prednisone as a UC magic bullet.  Mary 

 

I am in remission and continue to take meds because the one I take has no side effects and according to my GI can prevent inflammation in the long term.

There are no guarantees with UC but we have seen stories here of people who quit their meds upon remission (some on doctors orders) and gotten a more severe case that required stronger meds or surgery. Of course, this happens to people who continue their meds too. There really is no way of knowing. (Don't take prednisone long term however. Use in times of crisis only).

I think the key is to find a med that keeps inflammation lowered without any side effects. At his age he will probably feel like Superman anyway and stop taking them at some time in the future (my guess) but try to find something now that will help without symptoms.

Good luck. UC is a lifelong learning process.

I am also allergic to mesalamines. I agree with the previous advice to find a supplement or a med that you can take regularly that is safe.

But what is even more important for me is isolating foods that trigger symptoms. Gluten and dairy are the usual suspects but any food can cause problems. Identifying your dietary triggers, if you have any, can save much aggravation.

Being on maintenance meds helps reduce the chance of a flare-up, which is why the doctor wants your son on 6-mp. Normally mesalamines are used for maintenance but your son is obviously allergic. Keeping the number of flares down is very important, both for quality of life and because it reduces the risk of complications such as colon cancer. Also, 6-mp is way less toxic than prednisone, which should only be used during very acute disease. Prednisone has a number of nasty side effects, such as osteoperosis and hypoglycemia.

Not everyone has food related triggers. I, for example, have several foods that are irritating during flares but no food triggers that cause them. However, reducing intake of irritating foods during flares is always a good idea-coffee and dairy are two of the biggest offenders due to lactose intolerance/stimulant properties of caffeine.

Thank you everyone for the replies, they have been very helpful and thought provoking. Re: other blood tests, he has had them all and is also taking something for impaired liver function (Ursodeoxycholic acid) and will have a liver biopsy when the GI rescopes him in the future.  He was quite deficient in many areas when he was 7.5 hemaglobin but the blood transfusions brought him to just below normal levels.  Still concerned: I saw something which implied that the 6-mp isn't for everyone and mentions liver function so I am again fearful.  He started the 6mp yesterday.  I guess we have had a serious flare back in January when his scopes looked like a pizza, symptom free for 10 months, and rescoped after being hospitalized for the feet swelling, etc (leading to blood transfusions).  The recent scopes looked normal (to me!) but for what looked like mild eczema inside his intestines (I nearly laughed when I saw how differeent these pictures were).  Nonetheless he has had 2 high dose steroid courses, both after he has been symptom free, the second course is now (again, no GI symptoms in 10 months).  The meds simply wipe him out and I am now suspectiing that the impaired liver function is not helping.  I do appreciate the help of the steroids as he had lost 10 kg (about 25lbs) and not put it back on since January (wavering in a 5 lb range for the 10 months).  He has gained 8 kg in 2 weeks and I can only assume the pred is helping something on the inside that I cannot see, but still afraid of 6mp after the serious complications with the other meds (azathioprine, mesalazine, cipro).  He also had NG feed tune which is what initially stopped all outward GI symptoms.  He is just a kid and it breaks my heart.