whoa an interesting discussion, sorry to be arriving late. CT continued good success with your recovery from Thyroid cancer. so without making a mess of the thread, I will try to share my story. I had my jpouch created in 1986, did reasonably well with it, with maybe pouchitis once every 18 months or so, without being scientific about recording the instances. about ten years ago, or maybe 12 I began to have more persistent and frequent bouts of pouchitis. this happened to coincide with a relocation and a new doc. my new doc, at UCSF who specialized in pouchitis, (why I chose to see her) decided after about a year that I had crohns. we've never really discussed biopsies etc, but it was as she said at the time, a clinical diagnosis ie based on my symptoms, descriptions etc. she wanted to put me on Remicade, this was 2006 I think, at the time it was still relatively new, and certainly new to me. I declined, wont bore you with those details, chose to instead do rotating abx, Flagyl, Augmentin, Xifaxin, did that for a year to incomplete success, developed an allergy to Augmentin, and finally relented and started Remicade. which after about 5 infusions had miraculous benefits. lo and behold though that year punt, seemed to have allowed my crohns to take further hold, and I have two strictures one midpouch and one above the pouch entrance. having a midpouch stricture is akin to halving the capacity of your jpouch, so I have more frequent bowel movements as a result and never sleep more than 5 hours and more often its like 3 hours before I have to evacuate again. in hindsight I supposed the constant inflammation is what contributed to my stricture formation but that's more a guess. long story short, if your docs allow it I woud encourage you to seize the opportunity to quell your inflammation which is what Remicade or any other biologic is expert at. good luck to you on your journey. and sorry for the long story I hope it makes sense.
oh and btw from my understanding Pepto has aspirin so that might contribute to bleeding. fwiw.
So yesterday I found out I passed all my pre-Remicade blood test lab work as well as the tuberculosis skin test. My Doctor told me once my insurance approves Remicade I will be infused at 0, 2 and 6 weeks. After the 3 infusions, at the 3 month mark, he will scope me to determine if the inflammation has improved. If yes we continue, and if no we stop. It's going to be the plain old eye test. The next line of treatment if Remicade fails is Entyvio, which is also infused but works through a different mechanism of action.
Did he explain why Remicade or Entyvio over Humira, Simponi, or Cimzia (which are self administered injections)? They all have up to 3 months before a benefit may be seen.
Jan 
Yes, he stated to me there is more data on the efficacy of Remicade to treat pouchitis than the other ones mentioned. He said Entyvio is actually safer than Remicade, but there is less data on its efficacy in treating pouchitis. I suppose the other ones mentioned could be options down the road if we exhaust Remicade and Entyvio.
He also ruled out 6MP- for now. He said no immunological drugs so soon after cancer treatment, even though my endocrinologist personally called him and green lighted any and all treatment (my endo told me he told GI "go for it"). He (my GI) said he would prefer to hold off on any immunological drugs until at least a year out when I have had another cancer free scan. He explained that the way Remicade works is different in terms of impact on the immune system than the other ones. He thinks it is the best first option, but we will stop if no benefit is seen at the 3 month mark.
Makes sense. I was able to find an abstract that summed it up. I guess since my primary reason for biologics was arthritis, there was more data on that aspect. There just isn't a whole of of data on pouchitis treatment in general, since it is a relatively rare disorder. It just does not seem so here!
http://www.ncbi.nlm.nih.gov/pubmed/26084005
Jan
I'm waiting approval for Entyvio.
HI everyone,
I had my first Remicade infusion today. They started the IV at 9 am and the bag ran out at 11 am, exactly 2 hours. The infusion was administered in a small room at my GI doctor's office that had 2 comfortable recliner chairs and a small TV on the wall. When I got there, there was a guy in another chair who had his IV started at 8:30 a.m and then when he finished, they rotated in another guy to his chair at 10:30 a.m. The nurse told me that 8 patients would be infused in the "Remicade Room" today.
Both the nurse and the guy in the other chair warned me that I would be "wiped out" with fatigue by the end of the day, or by tomorrow, this being my first infusion. So far, I feel 100% normal. It's just like the radioactive iodine I drank for thyroid cancer- don't feel any different. Will it hit me tomorrow?
Did they premedicate you with Benadryl? If anything I was tired, nappy during the infusion from the Benadryl, but I was never hit with fatigue in fact I was if anything hyper post infusions. In hindsight that was probably attributed to the hydrocortisone that I was also premedicated with as my doc took me off Azathioprine. Not everyone is fatigued, but many are.
I was not premedicated with Benadryl. I am not sure why that would be necessary. I am at work today and never felt the wave of fatigue I was warned would hit me after the first Remicade infusion. I feel completely normal. No side effects, so far. My next infusion is already scheduled on December 4, and the third one will be January 5.
many premedicate, I actually think it might be protocol. Remicade is made with a mouse protein, so there is a risk of rejection, allergic reaction to same. there are, however, some docs who prefer to wait to see the reaction before they treat it. And to my mind as well your swift 2 hour infusion was a bit fast for a first infusion, but hey nothing went awry so no worries. typically the infusion rate is gradually elevated over the course of delivery to ensure patient tolerance. a faster infusion rate would heighten the risk of allergic reaction.
Yeah, I wondered if that infusion rate was fast because I talked to other people who said it took 3 hours. However, so far, no reactions or anything and no fatigue.
So happy for you, hope it works fast!
Keep us posted! Hope you get great results!
Hi everyone -
I am happy to report that I have noticed improvement since my first Remicade infusion on Nov. 16. In particular the number of bowel movements are down and I haven't had a single episode of nighttime leakage since the infusion - and they were somewhat consistent prior to the first infusion. In addition I am at the end of a rotation onto Xifaxin when normally things would be getting a little shaky, and they aren't shaky. I will extend the rotation and see what happens.
I went on vacation last week and although I did bring some Depends underwear which I normally wear when sleeping on other people's beds, I felt confident I didn't need them and I didn't need them. Everything went well.
My next infusion will be this Friday December 4. I am actually looking forward to it.
I haven't noticed any side effects or symptoms from the Remicade. The only difference is that the pouch function is better.
I am happy to report that I have noticed improvement since my first Remicade infusion on Nov. 16. In particular the number of bowel movements are down and I haven't had a single episode of nighttime leakage since the infusion - and they were somewhat consistent prior to the first infusion. In addition I am at the end of a rotation onto Xifaxin when normally things would be getting a little shaky, and they aren't shaky. I will extend the rotation and see what happens.
I went on vacation last week and although I did bring some Depends underwear which I normally wear when sleeping on other people's beds, I felt confident I didn't need them and I didn't need them. Everything went well.
My next infusion will be this Friday December 4. I am actually looking forward to it.
I haven't noticed any side effects or symptoms from the Remicade. The only difference is that the pouch function is better.
CT Barrister,
Great news! It's wonderful to hear about such success.
good news!
Very glad to hear the Remicade is working for you!
I've been dealing with Pouchitis since a few months after my take-down surgery in March of 14. I've been through all the diets and medications I tried when I had UC and they have not been successful in reducing the chronic inflammation in my pouch (verified by scope).
I'm nearing the end of the road again and am about to have my second infusion of Remicade. Entyvio is next if I can get it approved with insurance. I am simultaneously pursuing a surgical consult to prepare for a reversal to an ileostomy. I must admit that the 3-months I had the ileostomy in between my two J-pouch surgeries was the best I have felt in 8 years. While i'd love to have a functioning pouch I am tired of feeling so sick - about as bad as when my UC was at its worst.
One of my GI docs says he may want me to try tincture of Opium. We'll see.
This has been a very helpful discussion thread for me. Thank you all,
Remicade worked great for me for almost 5 years when I had UC. We had to find the right dosage and interval.
I am failing with Cimzia, it really isn't doing much for me except for some neuropathy side-effects. Right now my GI is trying to get my insurance company to approval Stelara. It is soon to be FDA approved for CD.
I wanted to try Stelara before I tried Entyvio because Entyvio is more effective in UC than CD.
4Acure posted:Very glad to hear the Remicade is working for you!
I've been dealing with Pouchitis since a few months after my take-down surgery in March of 14. I've been through all the diets and medications I tried when I had UC and they have not been successful in reducing the chronic inflammation in my pouch (verified by scope).
I'm nearing the end of the road again and am about to have my second infusion of Remicade. Entyvio is next if I can get it approved with insurance. I am simultaneously pursuing a surgical consult to prepare for a reversal to an ileostomy. I must admit that the 3-months I had the ileostomy in between my two J-pouch surgeries was the best I have felt in 8 years. While i'd love to have a functioning pouch I am tired of feeling so sick - about as bad as when my UC was at its worst.
One of my GI docs says he may want me to try tincture of Opium. We'll see.
This has been a very helpful discussion thread for me. Thank you all,
I think you should have at a minimum the loading doses of Remicade, which if I recall correctly would be considered the first 3 before you should begin to evaluate its effectiveness. For me I don't think it was until the 5th infusion when I suddenly realized, whoa this is why people love this medication. good luck 4acure.
ks1905 posted:Remicade worked great for me for almost 5 years when I had UC. We had to find the right dosage and interval.
I am failing with Cimzia, it really isn't doing much for me except for some neuropathy side-effects. Right now my GI is trying to get my insurance company to approval Stelara. It is soon to be FDA approved for CD.
I wanted to try Stelara before I tried Entyvio because Entyvio is more effective in UC than CD.
ks does that mean your dx has morphed to CD?
that's curious, seems like I am hearing more about neuropathy from biologics lately. I don't think its common, but it does seem to happen.
Thanks, DeweyJ
I will have the loading doses and assess after. The skepticism/resignation you read in my post was because Remicade did not work for me when I had UC, so I have doubts about how it will work for me now.
The only treatment that has ever gotten me out of a flare is Prednisone. I'm on 30mg a day as I write. And, like the courses of antibiotics I have been on, the flare comes back as soon as I stop taking them.
deweyj posted:ks1905 posted:Remicade worked great for me for almost 5 years when I had UC. We had to find the right dosage and interval.
I am failing with Cimzia, it really isn't doing much for me except for some neuropathy side-effects. Right now my GI is trying to get my insurance company to approval Stelara. It is soon to be FDA approved for CD.
I wanted to try Stelara before I tried Entyvio because Entyvio is more effective in UC than CD.
ks does that mean your dx has morphed to CD?
that's curious, seems like I am hearing more about neuropathy from biologics lately. I don't think its common, but it does seem to happen.
My GI uses the terms Pouchitis and CD interchangeably, at first it freaked me out but now I take it in stride because it doesn't actually effect the way that I feel so the terminology doesn't effect me.
His logic is that our pouches are built from our small intestines and if our pouches are inflamed then it's inflammation of the small intestine then it is CD. My pouch has ulcers in it so that's when he started to use the term CD more often in our conversations. I don't think that we'd even have the conversations if my pouchitis wasn't chronic.
He also says that he treats pouchitis with the same meds as CD.
The benefit for me when he called it CD is that I can get my insurance company to approve more medications and easier than if it was still dx'd as UC.
I've gotten neuropathy from all of the anti-tnf biologicals that I've used, Remicade (after 5 yrs), Humira, Simponi and Cimzia.
4Acure posted:Thanks, DeweyJ
I will have the loading doses and assess after. The skepticism/resignation you read in my post was because Remicade did not work for me when I had UC, so I have doubts about how it will work for me now.
The only treatment that has ever gotten me out of a flare is Prednisone. I'm on 30mg a day as I write. And, like the courses of antibiotics I have been on, the flare comes back as soon as I stop taking them.
whoa you had Remicade before? for how long? how long was the interruption in infusions? are they premedicating you? I would be very very cautious and aware of any potential allergic reactions, including full blown anaphylaxis. I don't mean to alarm, but to point out the potential so you are cognizant if you see signs/hints of it.
ks1905 posted:deweyj posted:ks1905 posted:Remicade worked great for me for almost 5 years when I had UC. We had to find the right dosage and interval.
I am failing with Cimzia, it really isn't doing much for me except for some neuropathy side-effects. Right now my GI is trying to get my insurance company to approval Stelara. It is soon to be FDA approved for CD.
I wanted to try Stelara before I tried Entyvio because Entyvio is more effective in UC than CD.
ks does that mean your dx has morphed to CD?
that's curious, seems like I am hearing more about neuropathy from biologics lately. I don't think its common, but it does seem to happen.
My GI uses the terms Pouchitis and CD interchangeably, at first it freaked me out but now I take it in stride because it doesn't actually effect the way that I feel so the terminology doesn't effect me.
His logic is that our pouches are built from our small intestines and if our pouches are inflamed then it's inflammation of the small intestine then it is CD. My pouch has ulcers in it so that's when he started to use the term CD more often in our conversations. I don't think that we'd even have the conversations if my pouchitis wasn't chronic.
He also says that he treats pouchitis with the same meds as CD.
The benefit for me when he called it CD is that I can get my insurance company to approve more medications and easier than if it was still dx'd as UC.
I've gotten neuropathy from all of the anti-tnf biologicals that I've used, Remicade (after 5 yrs), Humira, Simponi and Cimzia.
ah makes sense to me. ive learned recently that while my new doc in my newly relocated city 10 years ago changed my dx with clinical observation, we have never actually seen it in biopsy. but I agree the insurance issue is cleaner, and the fact is I seem to respond to the meds. I have seen a few patients do well with Stelara who haven't seen long term success with the anti-TNF's.
Thanks for your concern. Yes, pre-medicating including Prednisone, and Benadryl drip, before the infusion. I have also had the blood-work to ascertain that no antibodies are developing with regards to the Remicade.
Hi everyone. This is an update. I just had my 3rd remicade infusion. I am doing well. Just to recap my timeline:
1st Remicade Infusion: November 16, 2015
2nd Remicade Infusion: December 4, 2015
3rd Remicade Infusion: January 5, 2016
Next steps:
Scope to Check Progresss: February 25, 2016 (scheduled)
4th Remicade Infusion: March 9, 2016 (scheduled)
I feel like my number of BMs are down and the frequency level of crampiness and irritation is way down. My GI says full effectiveness of Remicade usually cannot be determined until 90-120 days which is why he will scope me in February. He wants to see what the results are. Stay tuned.
That's great CT! Remicade worked miracles for me except I could not tolerate it.
Entyvio also after 2 infusions put me in remission and I was able to reconnect. So far I've had 3 and doing well with this.
My GI for the first 10 years would tell me I had CD. But all my markers show UC and after I had adhesion surgery 5 years ago and the surgeon told her no sign of CD she finally shut up. Now she says I just have inflamation markers that need to be dealt with. Whatever.
I just need this drug to work till they come up with something else.
I just had my first Entyvio infusion yesterday. Was uneventful, thank goodness. Another one in two weeks, then a month...we'll see.
4acure, why did you switch from the Remi you were taking? Was it not working? Or did you have antibodies, etc?
I hope the Entyvio works. I have read that people that fail the other bios are doing well with this.
Lots of antibodies -- recall that it was my second time trying Remicade. Too many to safely continue. Hoping for good things from Entyvio.
I had a flexible sig scope with no sedation this morning. The cuffitis is gone and the inflammation in my J Pouch is gone. The Remicade infusions have clearly worked on the pouch and my GI declared the pouch "fantastic."
Unfortunately, however, there is a small swath of inflammation in the ileum which doesn't appear to be improved. At this point, given these findings, it's clear we are dealing with Crohn's. My GI doc said that this inflammation is tougher.
Therefore, he is increasing my Remicade dosage from 5 mg to 10 mg and he is putting me on 12.5 mg Methotrexate per week. The Methotrexate maximizes the impact of Remicade by limiting the renal secretions of it. It also helps prevents antibodies.
He warned me Methotrexate could cause nausea and to take it with food and Zofran, which I have a stash of leftover from my thyroid cancer / radioactive iodine treatment.
So the bottom line is I have Crohns but the Remicade is working on it. I would rather have treatable Crohns than untreatable pouchitis any day. Anyway we now seem to have a handle on everything and the cuffitis is completely gone, which is certainly the biggest area of concern as that is the most dangerous area to have continually inflamed.
Any of you guys do the Remicade-Methotrexate combo?
That is really good news CT!
I have had 3 infusions of Entyvio thus far and the results have been promising. I am feeling better, am managing my symptoms, and have gained weight. My doc says we won't do a scope until I have been on it for 6 months, so, not until summer.
I am also taking Tincture of Opium 2-3x/day.
4ACure,
Entyvio was my GI doc's backup plan to Remicade if Remicade wasn't working, but since the pouch inflammation responded to the Remicade but we still have a patch of inflammation in the ileum, he decided to jack up my Remicade dosage and add Methotrexate. It's comforting to know that Entyvio stands as a big bat in the on deck circle, just in case Remicade stops working at some point, which it probably will, as it seems like many people develop antibodies to it at some point.. Doc told me Entyvio has a different mechanism of action than Remicade, although they are in the same class of drugs.
He will scope me in June and see where we are with the inflammation in the ileum at that time.
Wow, CT, that is fantastic news!! Can you remind us the level of inflammation in the pouch/cuff; was it severe or moderate? Also when you say patch of inflammation in the ileum, do you mean above the pouch?
I am currently on Humira, and added methotrexate 3 weeks ago at 15 mg. I self inject at night before bed, this way I'm sleeping if I do feel slightly nauseous. I have had no side affects thus far. It does take about 6 wks to work, so I'll have a scope in May. If the inflammation hasn't reduced, I'll move to Remicade. Your results keep me hopeful! Thanks for the update. You certainly need to celebrate this great news!
Brewbirds,
On my last scope before today in June 2015, there was active moderate to severe inflammation of the cuff, the pouch, and a patch of the neoterminal ileum above the J Pouch. I have had inflammation above the J pouch for at least 10 years and it was suspected of being Crohns as early as 2007, but my J pouch specialist at the time thought it more likely was the result of "backwash stool" due to significant inflammation/narrowing/ stricture at the J Pouch inlet- and SIBO.
Today's scope, after 3 Remicade infusions in November, December and January, 5 mg each time, showed the pouch looks "wonderful" (his words, but I saw it as well as I wasn't sedated). However the inflammation above the pouch is essentially the same as it was back in June. He said that inflammation is "tougher", but he believes a jacked up 10 mg dosage of Remicade and a low, 12.5 mg dosage of Methotrexate is going to do the job on that remaining area of inflammation.
I said to him, "this more or less confirms I have Crohns, doesn't it?" And his answer was "yeah, you definitely have Crohns, but we are going to treat it."
I have an appointment with my GI tomorrow, one of the things that I was planning on bringing up with him was if it was possible for me to go back on Remicade. I was on Remicade due to UC for 5 years and it worked great but I built up antibodies to Remicade and had to discontinue it. I've been off of Remicade for 4 years.
I am currently on Cimzia and it is not working that well for me, I need to make a change, probably to Entyvio or Stelara, I've been pushing for Stelara with my PITA insurance company because Stelara seems to be more effective in CD than Entyvio is. Hopefully this year the FDA approves Stelara for CD and then my stupid insurance company can't fight me over it anymore.
CT, I'm glad that Remicade is working for you. Remicade only worked for me at 10 mg doses at 6 week intervals. My GI thinks that I have CD too.
Now because the pouch and cuff look great, did your doctor say you could take a break from the antibiotics?
Brewbirds,
I am already on reduced dosages of the antibiotics, but he told me I could continue all of them except amoxicillin, which he said could potentially interact with Methotextrate. Keep in mind I have been on antibiotics for almost 20 years now. So it's not like I should be in any hurry now that things are as good as they have been.
On another note however, towards the end of my last two week rotation on cipro and flagyl, I noticed the tell tale itchiness in the leg pits that is the clear warning sign of the beginnings of a yeast infection, and in the past I got yeast infections when combining antibiotics with immunosuppressant drugs (entocort). However I am prepared for this and have a stash of Zeabsorb-AF powder. After dousing the itchy leg pits with powder 3 straight days, the itchiness was gone, and I am on xifaxin now. So there will not be any issues and xifaxin isn't systemically absorbed anyway.
Glad to hear things are looking good for you CT. I am soon starting on Remicade too, as Cimzia just wasn't doing it for me. I'm taking a break between treatments to get my shingles vaccine. So there will be a 6-8 week treatment gap.
My GI will be starting me on azathioprine prior to the Remicade, to reduce antibody formation and enhance the mucosal healing. First the blood tests, which include a TB test. In the past I've had the skin test, but he prefers the blood test. I think the azathioprine has a slightly better safety profile than methotrexate (plus it is an oral med- yay!). There is oral methotrexate too. Like you, Entyvio is another option, but my GI prefers not to experiment with his patients (his words). Still, he likes the notion of its targeted gut action and similar safety profile.
The more current literature shows that biologics (Remicade in particular) work better when combined with immune modulators when treating IBD.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2950663/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002564/
Fortunately for me there is no inflammation outside of the pouch, and even the afferent limb in the pouch looks good. But, the efferent limb (blind end of the j) has severe ulcerations and chronic inflammation, and the cuff was inflamed too.
Jan