Skip to main content

Jan, I have a 30 yr old pouch for due to UC and colon/rectal cancer. Developed frequent pouchitis episodes many years ago which manifests itself mainly in trouble emptying. Cipro worked very well for me for many years but then I became resistent to it, Flagyl makes me  nauseous.  Some other anitbiotics were not that successful.  Entocort was wonderful but my doc is not in favor of being on it long term and have just weaned off.  Complicating things is my tendency for EN and PG on my leg for which my derm injects me with steroids which he says in in my system for about about 7 weeks.  My GI  (who is at a different facility from my surgeon and they do not communicate with each other than through me (and I prefer it this way as a way of having a" second opinion")wants me to try Entyvio infusions but I am very nervous about since it was only FDA approved in May and no long term studies about side effects are in yet. I did read there is low risk of cancer of different types and a fatal brain condition called PML?(PLM)?.and other complications  Additional concerns are that I had a fistula track since 

2004 (hysterecomy with difficult adhesion take down)" arising from superior j-pouch which appears patent, terminating om a 2.2cm chronic anterior pelvic abcess cavity". Needle biopsy revealed no abcess material, infection or cancer.  Since it has been stable  for 10 years with no symptoms whatsoever my surgeon doesnt want to tamper with a surgery and prefers to just keeps monitoring it with annual scans. I am afraid that if i proceed with the entyvio it will somehow screw up this quiet unsymptomatic situation and i would be begging trouble. Also as I generally feel well  and my lifestyle is comfortable and easy going I do not feel that I am at the point to go to something such as entyvio that seems to me to be reserved as a final recourse when all else fails and the patients quality of life is compromised without it. Besides, with my intermittent outbreaks of PG/EN and my derms steriod injejctions to treat it, I feel that helps with my pouchitis anyway.   My gut feeling is I rather wait until I feel a more pressing need to feel better or have considered different schedules of alternating or tandem anitbiotics (been on vacation from Cipro for 3 years) possiblly including or trying entocort on an alternating basis or lower doses.  Both the doc and surgeon are at well known and respected teaching hospitals. Your thoughts on the entyvio, etc issues for me.  Thank you so much and sorry for the lengthy post.

Replies sorted oldest to newest

From what I was able to glean from the literature, Entyvio is different than either steroids or biologics. The end result is similar, with a blocked inflammatory process. Steroids work all over the body in a more global sense and are damaging to your organs, eyes, etc. biologics mostly block TNF-alpha molecules from entering the inflammatory cascade. Entyvio blocks white blood cells from entering the gut and participating in the inflammatory response.

 

My first question is why not Remicade, Humira, or Simponi, since they have been in the pipeline longer?  The other question is whether your insurance will cover it without failing at least one of those other options? It may be the next best thing since sliced bread, I don't know. But, I would be asking my GI about those questions. He may have perfectly good reasons. I will tell you, though, I would personally want to shy away from IV infusions and opt for injections I can do myself, unless there was a compelling reason. 

 

I do agree with your doc that you need to be more proactive and treat your gut more agressively so you are not dealing with the PG/EN on a recurring basis (a sign of poorly controlled gut inflammation).

 

Jan

 

 

Jan Dollar

Jan thank you so much for your response. Just 2 few short related questions.

Why do you suggest opting for medication such as humira that I can inject myself rather than biologic infusions... is it because they are safer or is it a matter of convenience or expense or efficacy of the particular drugs involved? (Also pertinent  is the fact that my veins are extremely uncooperative and usually require the anthesiologist to start the IV for pouchoscopies after 4 or so attempts by the tech or nurse). Secondly, although the research and assumption tends to be that outbreaks of PG/EN are a manifestation of increased infalmmatory process in my pouch, this tendency does not seem to apply to me.  Even when my pouchitis symptoms are non-existant and I feel good, I still get outbreaks, and the converse is also true...when my pouchitis is active and I feel crappy, I do not necessarily get PG/EN. Is this possible? Having frequently used kenalog shots/steriods to treat my outbreaks, my Derm mentioned the consideration of treating it with cyclosporin instead.  How would this flow with the other meds my GI may put me on at my next visit wednesay a.m. I will also be asking him about the possibility of Uceris instead of the infusions .  What can I expect from the cyclosporin... are there many risks involved?

H

For me, part of it is convenience. Self injection avoids the inconvenience and time waste of an office visit and time it takes to infuse. With self injection, you inject at home at your convenience. I've been on biologics for ten years and that would be a lot of office visits and time sitting there!

 

And, yes, giving your veins a rest is a good thing too. Not to mention that it is cheaper for you (no office copay) and for your insurance company. I am always for the most cost effective options, and not necessarily the ones that provide extra billings for the doctor's office.

 

But, I don't think the infusions are less safe per se, other than the risks associated withvein damage and possible acute allergic reaction (as the drug becomes systemic immediately).

 

It does sound like your peripheral skin lesions manifest independently from your gut inflammation, so I'm not sure how that might change or affect your treatment.

 

Jan 

Jan Dollar
Last edited by Jan Dollar

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×