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biologics

Fri, April 09, 2010 3:42 PM

Hi all,

My 9 year old son had another colonoscopy today, an ordeal in itself as usual and though the azothioprine has worked pretty well, there is still some patchy ulceration and the dr wants us to try biologics. Called revellex here, I think?

Is this the same as Humira and Infliximab?

All v v expensive here (South Africa) and don't even know whether med aid will approve it on our scheme.

He is also so needle phobic, absolutely terrified of blood tests etc. Dr says that he can either have infusions (ugh) or have injecton every 2nd week. Either way, I see another emotional upheaval for him. So hard.

Sorry about the moan.

But just another mom tonight feeling a bit despondent. Try so hard to focus on the positive, and we do have so much to celebrate. But sometimes I really hate the fact that my child has this horrible thing in his life. Wish I could do it for him.

Any thoughts on biologics? I hate the side effects of all these drugs.

Be gentle he he

love

James' mom

neesie
Joined Nov 4, 2009

Tue, April 13, 2010 12:00 AM

Reply posted for Neesie.

My daughter is five and is currently taking Humira as well as Methotrexate for juvenile arthritis and uveitis diagnosed at 2 and 4 years old, respectively. She was diagnosed with ulcerative colitis a few weeks ago. The gastroenterologist seemed surprised by the inflammation and ulcers and commented that Humira and Methotrexate should be keeping it quiet. She said the other option would be Remicade, but she wants to start her on Sulfasalazine first and then switch to Remicade if needed. But even before the Sulfasalazine, she has decided to start her on VSL #3, and I'm starting our family on the SC Diet.

My daughter took Enbrel prior to developing uveitis and had to switch to Humira because it works better at keeping the uveitis quiet than Enbrel does. But my daughter has exhibited abnormal GI issues for as far back as I can remember and neither of these meds kept the GI stuff quiet. Doctors didn't think there was GI involvement other than a possible lactose intolerance or reaction to medications she was on until she started having bloody stools, and even then, I sensed the doctors didn't think they'd find anything. The colonoscopy gave us the answers we had been looking for.

I don't know the biologic you mentioned, but in our experience, the Enbrel and Humira have not kept the ulcerative colitis quiet. Of course, we don't know how long she's had UC, but given her symptoms for the past several years, I'm willing to bet she's had it for as long as the arthritis.

The biologics are very expensive. I didn't learn until I attended a juvenile arthritis conference that the pharmaceuticals will discount the meds for a period of time, which helps a bit. I'm not sure if that's just in the US or anywhere in the world.

jamom
Joined Feb 3, 2010

Sat, April 10, 2010 12:00 AM

Reply posted for Neesie.

Hi,

Depending upon the location of your son's disease, enteral nutrition might be one treatment option to try prior to a biologic. My son's Crohn's is located primarily in his small bowel vs. large and has started E.N. instead of a biologic med. I am saving that for last....

Beth (Ben's (age 7) Mom)

ecsmit
Joined Jan 25, 2010

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