Remicade or Cimzia as a next step?

Hey, I'm 19 years old too and have been flaring for roughly the same time. This is my first flare so it's been tough on me and my parents. I have a specialist appointment tomorrow to discuss new medications. I'm currently on prednisone which I am not responding to. Has your son been on steroids yet?

Personally, I am going to exhaust all alternatives before remicade but I would sooner opt for surgery than remicade. Only time will tell

If you're son is responding even a bit to Lialda, that's good news. Those drugs can take up to 3 weeks to be in full effect and then the dosage lessens for maintenance.

I think Remicade is the standard treatment path and it's approved for pediatric use - although 19 is not a child. I think I would prefer Remicade over Cimzia simply because it has more proven results with treating UC. I think in your case, I'd give the Lialda some more time, & try rectals.

I just want to emphasize that he really should try the rectal meds (mesalamine enemas) LONG before considering a biologic drug. If that doesn't help, I would also suggest he try prednisone LONG before a biologic.

I am one of the unlucky ones that only responds to steroids and Remicade. In my inexpert opinion, Prednisone was the worst drug I have ever taken. Why? Side effects sucked, in two months: I gained ten pounds, started loosing the hair on my head, grew big ugly hairs in places they shouldn't have been on a female, water retention, and the kicker for me was the osteopenia. And that was only after two months. I started taking Remicade in August of last year. It was the only medication that worked to get me off Prednisone, so perhaps I'm a little bias for that reason alone. I have two issues with Remicade. First it sucked my energy away, secondly it costs an arm and a leg. I work at Walmart and carry the insurance for my husband and myself. Each treatment (every 7 weeks) is $1000, yes that's after insurance. Remicade does offer a financial assistance program which is very helpful but only for as long as it lasts. I suppose the gist of my response is that although it sucks to have to rely on a biological, it put me into remission. I was diagnosed in August of 2009. My last colonoscopy was normal - sooo nice. Without Remicade I would be looking at surgery. The side effect list is scary, very scary. My Gastro put me on Imuran in conjunction with the Remicade, also a scary drug. I ended up finding information on the probiotic VSL#3 on this website and started a few months ago. That gave me my energy back. This fact is still baffling to me, a probiotic giving you energy... weird. I don't have my old life back, I probably never will but I'm a whole lot closer, there is a light at the end of the tunnel, as much as I hate using metaphors. I had to wait almost three years to find mine. Don't give up, really.
Just as an after thought. I was taking an enema when I was first diagnosed, it did help. Unfortunately my colitis spread throughout my entire large intestine, the enema only helps with the last few inches. And with the Remicade, my Gastro has them draw blood each time I go in for a treatment so he can monitor my vitals. I take some comfort from that fact.

Thanks for all the helpful advice. He just got done with his colonoscopy and endoscopy. Stomach looks "great" and colon has only a few patches of UC. Doctor said to continue the Lialda and no need to start Remicade at this point. He said colon looked much better than it did in March. Thank God for the positive news. With the flare that he's been going through, I was afraid of what his colon looked like! However I am going to try real hard to persuade him to do the rectal meds! Thanks so much for all if the opinions and guidance, it truly helps!!!!

Herbgarden,

Glad to hear the endoscopy results were good, and that the UC looked better. It must be such a relief to you both.

My suggestion is LDN, low dose naltrexone, as well as making diet modification, probiotics, and certain supplements in order to keep his progress In the right direction.

InSoFla said...
Herbgarden,

Glad to hear the endoscopy results were good, and that the UC looked better. It must be such a relief to you both.

My suggestion is LDN, low dose naltrexone, as well as making diet modification, probiotics, and certain supplements in order to keep his progress In the right direction.

Thank you! It is a relief! We have just started LDN and I switched his probiotics to the VSL#3 DS, hoping that will help too. He has lost 15 pounds these past 2-3 weeks, so I'm giving him protein drinks in between meals. It's so frustrating!!!

He is on 3mg and I forgot to ask which filler they are using. Dr. Burt Berkson prescribed it and it is the oral type. He is having some minor pain but not like it was. He is doing slippery elm powder when I can get him to do it! I will check into the threelac. He is doing Florastor right now as well. I just ran out of L-glutamine but he was doing that also. What kind of l-glutamine do you use?

Dr Berkson is amazing! That's all I can say. We spent a week in New Mexico seeing Dr Berkson. It was an expensive trip but well worth it. He recommends Alpha lipoic Acid as well. He also put us in contact with a doctor on the east coast which is much closer for us. To this day, I can email him with a question and I get a response the same day. He truly cares about his patients. We met people from all over the country that travel to see him. Thanks for the info on the glutamine.

Thats' quite a jump in meds! Asacol didn't work so I tried another type Apriso. There's also Colazal, Rowasa enemas, Budesonide enemas and suppositories and Prednisone, Hydrocortisone enemas too. I would try all these first.

Next step should be immunosuppressant such as 6mp or Imuran before Remicade.

It doesn't sound like your doc knows all the drugs.

We are "Berkies" too...amazing results. So glad we went to New Mexico - moving there before autumn 2013 - because he's there, and we can!