my 15 yr old son starting Remicade tomorrow. :(

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Hello my son was diagnosed with UC July 2015. he has tried salfsalazin and then Delzicol, and nothing seemed to work long term. so the doctor has him starting his Remicade treatment tomorrow, nurse said it is going to take 4 hours sad  i really dont have to many people to talk to about this as it not to common which is why i joined this forum.  so any tips or advise you have i would really apreciate it.  

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  • Posted

    Hi.

    I'm so very sorry your son has developed this wretched condition so early in life. So far I've not needed anything other than mesalazine to control my UC and didn't develop the disease until my late 50s, so I have no personal experience of remicade. I can only wish you and your son all the very best and pray that this treatrment will get him into remission. Hopefully other forum members will be better placed to offer more practical tips and advice. Take care.  Peter    

     

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    • Posted

      Hi again, ConcernedMom. 

      Thank you for your reply. I, too share your hope and will be most grateful if you woud be kind enough to pass onto your son my very best wishes for a successful outcome with this treatment.  You are both in my thoughts and prayers.

      With kindest regards,

      Peter.

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    • Posted

      Hi Tina,

      Many thanks for your kind good wishes.

      I hope the treatment has not been too unpleasant for your son. Here's to success in getting him into remission so he can return to a more normal teenager's life. 

      Peter A 

       

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  • Posted

    Hi. sorry to hear your boy has this awful condition so early in life. i have been on balsalazide since jan2015 with success. over the years when i've flared i've had courses of oral steroids prednisolone for months at a time which did calm the flares down, & have since maintained with balsalazide daily. i went through about four different drugs before i reached balsalazide which maintains my colitis. my first impression when i read your post is have they tried enough different meds before they put your boy on remicade? (isnt remicade an immune suppressant?) i thought immune suppressants were one of the last resorts medication wise....often it is finding the right med to keep a person in remission. my mum is on a different med to me for her colitis(cant remember name of it) & it suits her; but it didnt help me, so everyone is different. personally i would ask if you can try another more routine med or two first before resorting to immune suppressant drugs at such a young age. also the addition of oral steroids for a short period of time often brings patients under control. i also used steroid enema's & foams when i was in flare which helped the lower end of colon. hope this helps concernedmom xx
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    • Posted

      Hi looloo43

      Yes this condition is awful! I am glad you had found a medcation that works. For my son its been a journey with his first flare he was hospitalize for 5 days that where the doctors ran test on him and did and colonoscopy and that when the had told us he had UC. They treated him with emema's and foams a long with sulfusalazine witch works really well ,but only for 4 months. For his flare they started him on the emema's and the foams those didnt work so started on the prednisolone but after 1 1/2 -2 months these treaments didnt stop the flares or the bleeding so he had to go back in to the hospital for a 4 day treament of steroids though the IV to stop the bleeding and they changed his medince to delzicol. This medcation last only 3 months and he has a flare again and the doctor is concern because of the bleeding. The next medication was a little scary ( I dont remember the name of the medcation) but by taking the next medcation their is a small change of cancer and studies show its more pron to boys age 15-21 and since he fall in both categories my doctors was hesitant so he gave us the option of starting him on  Remicade infusion. It was a hard choice for my husband and I pray we made the right choice. I just feel so bad for my son having to deal with this condition so early in life.

      concernedmom

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  • Posted

    Hi again, so he has been tried on a few meds....I don't know how long he has had uc, but to try & give you a bit of hope, I have been told by several medical professionals I have engaged with over last few years that the first 2 or 3 flares tend to be the worst, (I use the word "tend"), & over the years flares "tend" to get milder. So perhaps in time, your son may be able to come off the immune suppressant drugs & go on to a less severe medication in years to come. also the crohns & colitis uk website is very helpful-lots of info about meds etc & they have a helpline too. I sincerely hope he improves. Keep us all posted in his progress concernedmom. xxx
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  • Posted

    Hi ConcernedMum,

    Are you able to update us on your son 's condition?  I hope the Remicade infusions proved successful and he's making a good recovery. 

    It's such a wretched disease to develop at any age, but for a young man it's especially distressing. However, I have been doing some reading about developments in treatments for UC/Crohn's, and the future I think, is quite promising. I do believe that the moral really is to keep hoping and praying for an eventual cure, but in the meantime for ever better and more effective treatments to become available.

    My thoughts and prayers are still with you.

    With my kindest regards and very best wishes,

    Peter A

     

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