Thanks for sharing this Jan. I had this discussion with my husband today as I again reached for my antibiotics. I was happy to hear you mention Simponi may be approved for UC in the next year. At least there may be something else out there to help those of is on chronic antibiotics if antibiotics eventually fail. As usual for me, the pouch is not the real issue. I wish they could find a miracle oral/injectable medicine with minimal side effects for the last centimeter of ATZ that haunts me that surgery is the only real cure for. Such a big bang required with current injectales for such a small amount of residual disease.

what is story with simpoi jan as related to us here on jpouch?

A number of people with pouchitis, cuffitis, Crohn's of the pouch, etc. that do not respond to antibiotics or traditional IBD meds have been prescribed Remicade or Humira. Simponi is in the same class (anti-TNF biologic, fully humanized). What sets it apart is that it is being approved for UC before Crohn's. Usually, it is the other way around, and often many years or a decade or more before testing and approval for UC occurs. With Simponi, it was first approved for rheumatoid arthritis, then spondylitis, and soon UC.

I was prescribed Simponi for my arthritis, but it seems to have benefits for my pouch and cuff too! Another benefit (for me anyway) is that it is a monthly self injection. I had to use Humira weekly for the same benefit. Remicade is IV infusion only, so requires an office visit (taking a lot of your and your provider's time). Plus, Remicade is based on mouse protein, so more likely to cause allergic reaction. The monthly cost for the drug is about the same for all three.

Remicade is already approved for UC and Humira will be soon too, but currently only Crohn's.

Still, this study was about Remicade only, but I would expect similar results from others in the same class.

Jan

Remicade has always been mentioned to me as a "last line" or "last resort" treatment for my chronic pouchitis. My 1st GI was more willing to recommend than my current. In the past I have a track record of not doing well with immunosuppressant drugs. Imuran made my liver chemistries go wild. More recently, Entocort, before I started to wean off of it, was blamed for a sudden and massive breaout of hemangiomas and warts and a yeast infection. This could be due to the combo of Entocort suppressing my immune system and antibiotics killing skin bacteria such that my immune system was overly compromised as to skin issues. I also had to have a benign lentigo removed from my leg during the same period of time. Too much stuff going on with my skin at the same time to be a coincidence.

In any event I have been scared to try Remicade. I have a friend who is taking Humira for RA and Crohn's and his behavior is borderline obnoxious. If you eat out can't touch his plate or anything and he wants a million clean forks. He worries about infections 24/7/365. I am surprised he has not made his condo into a protective germ free bubble.

CT, your friend is going overboard, unless he has something else going on (like he's a germophobe before the Humira). I've been on biologics for eight years and I do not live in a bubble. I've had surgery, heart ablation, travel abroad, use public transit, and shake hands with people.

Jan

quote:

unless he has something else going on (like he's a germophobe before the Humira).

I think he was a slight germophobe before Humira and is now an extreme one post-Humira. He is a little bit crazy, but a good guy. His behavior in restaurants in particular is extremely bizarre to say the very least. There have to be numerous utensils, a fresh utensil every time something touches a plate, etc. It is a little out of control but I deal with it because he is a good guy and I kind of forgive these behaviors because I have my own eccentricities as well. I have now eaten out with him enough to know what to expect. If a third friend joins us they have to be warned in advance.

Sounds a little OCD, but that's OK, it is a common thing. Unfortunately, it is something that can turn into a nightmare, making it impossible to navigate your way through the day. My step-mom was OCD and it was extremely exhausting to deal with her, but I am sure it was much worse for her, as she was living it 24/7. Kudos to you for being a good friend and not making a big deal out of it, since it is something sort of out of his control (although there is treatment for it- if he is willing to recognize it).

I'm sure though, that you know that if the time comes for you to be on Remicade, Humira, or similar, you will not need to perform the same rituals!

Jan

quote:

I'm sure though, that you know that if the time comes for you to be on Remicade, Humira, or similar, you will not need to perform the same rituals!

Not as far as systemic infections but the possibility of skin disturbances has totally freaked me out. In the past few months, as if it was not enough to have lentigos, hemangiomas, warts and yeast infections dealt with by my dermatologist, I just had a horrible allergic reaction caused by hair color in my goatee which led to a secondary infection that he says would have been worse if I was not on antibiotics. My dermatologist told me the culprit was a chemical called p-Phenylenediamine. So I am worried about what would happen with my skin if I ever go on an immunosuppressant again. I have just weaned off Entocort.

You know your body best, but understand that Humira and Remicade work in a completely different pathway than steroids or antibiotics. It is targeted, rather than global. Still, it is not something to jump into without full understanding.

Jan

Had a nice 4 year remission with that awful drug. How stupid of me to think it would have given me a lifelong remission. Very discourage right now,failed almost all the drugs. I hope it works for someone else? Oh, I only took 2 doses as it made me real sick. I guess if u can tolerate it you could go many more years than me

If you had Reactions to Remicade, then perhaps Simponi is worth looking into for you, as it is fully humanized. I've never had a problem with it and my rheumy never even considered Remicade for me. I prefer Simponi over Humira because it is monthly.
http://www.simponi.com/

There also is Humira for UC too. So, you do have choices. My only complaint was that it would sting anf I had to take it weekly. Usually it is every two weeks.
http://www.humira.com/?cid=ppc_ppd_hum_ggl_brand_4461

Jan

I had a melanoma in the past and I'm afraid to try another bio drug.

Well, I think that is a very valid concern, and I don't blame you for having it. Odds are that you'd be fine, but melanoma is nothing to play with!

Jan

I have been taking 5 to 8 Mg of Remicade ever 8 weeks since 2007 without any ill effects. I still have plenty of trouble anyway. Recently my Doc told me that my pouch was fine and that my problems are "mechanical". I suspect that some nerves were damaged during surgery and that I'll just have to endure until the end. Anybody know to do about mechanical problems.

What I am surprised about is that Remicade is helping you if your issues are mechanical. Why are you taking Remicade? Have you been diagnosed with Crohns? You have not indicated what your issues with your pouch are.

I have also been told most my issues are mechanical in nature ranging from possible surgical ischemia to built up scar tissue at the anastomosis. I have had several dilations to address the latter issue and also continue to have issues. I deal with anal ulcers that are chronic most likely due to the reduced blood flow in the anal canal as a result of surgical ischemia.
I have been told I really need pouch advancement surgery to address my mechanical issues. This would potentially get rid of the stricture thus reducing my pouchitis symptoms and the mucosectomy would eliminate the chronic cuffitis, but I don't buy it and I do not want more surgery that may result in losing the pouch. There are instances of cuffitis coming back even after the mucosetcomy and strictures are more common with hand sewn pouches than stapled. The cipro I take on and off helps with the pouchitis I get due to bacterial overgrowth caused by the recurring stricture.

You may benefit from a second opinion from a qualified surgeon to further address your issues. If surgery could help you to get off the Remicade, due to any concerns you have with long lasting use, it may be worth thinking about.

Yup, that's me, from pouch advancement I have a anal stricture and I still get inflamed were it was hand swon.

I'm so sorry to hear about this Alleykat. My surgeon did not warn me about this with the surgery. I had to research it myself to find out that strictures are not that uncommon with a hand sewn pouch. As far as the ongoing inflammation, I am guessing that is coming from your lower pouch itself? I have always had inflammation in the very lower area of my pouch and the connection. I'm certain having the pouch advanced will not relieve me of that unless they can miraculously remove the bottom section of my pouch along w the stricture when advancing the pouch. Not happening hence no advancement for me. I hope you get some relief.

I have inflammation at the bottom of the pouch, I had ulcers too in the past. Last scope last week showed mild inflammation again at the bottom and moderate at the dome. had this 4 years ago. Something about bacteria, food getting caught up there, idk, I tuned out when she started talking endocort. I am failing or either can't take some of the drugs. This was not what I bargained for and yes I was almost done it by the surgeries so removing this is very scary for me. Looking into fecal transplant, joining the underground movement! very sad I would like to do this supervised. My GI is encouraging me actually! waiting for my son to come home from school. Yes, UC has a mind of its own and it just wants to keep making me miserable.

Per the inquiry as to why I'm prescribed Remicade, I had Pouchitis in 07 so severe that nothing was working. The Remicade cleared up most of the inflammation that was in my pouch. I keep on telling my Doc about my painful issues and so he had me take the Prometheus test for antibodies. We found that I have not built up any resistance to antibodies and so I will continue. I continue to take his advice because I possibly could regress to my condition at the beginning. I continue to try various Meds without any success. My Doc tells me that everything has been tried that he knows about. Meanwhile, I take 5 mg of Prednisone every other day along with the Remicade and I exist.