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Ulcerative Colitis
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Posted 5/18/2016 1:47 AM (GMT -5)
Haven't seen a post from Thoreau in quite a while. Wondering how he's doing. Does anyone know?

If you're out there, Thoreau, let us know. Pains subsided? Weaned off tramadol? Did you find a maintenance UC drug? Less stress? I hope so.

Just FYI - More and more reports collected by rheumatologists on our patterns of adverse effects of remicade. Entyvio so far so good.

Wishing you well!
Posted 5/18/2016 6:28 AM (GMT -5)
hey Count - he's been posting some over on the chronic pain forum -

last he reports, no issues with uc -

glad that the entyvio is working for you !


:-)
Posted 5/18/2016 8:43 AM (GMT -5)
Thanks Stud. I sent him a note there. Sounds like his UC is completely quiet with his dietary changes. Happy for him!
Posted 5/21/2016 2:09 PM (GMT -5)
Hey Content, Stud...

I did reply on the Chronic Pain forum.

So, with my UC... I had a colonoscopy in late March this year, which is about 17 months after the last of the Remicade left my body. I have not been on any medicines for it since. I am eating gluten-free now. My doctor was expecting to see disease, but his words after the procedure were "If I didn't know your history of having UC, I wouldn't know you had it."

My doctor is still very hesitant to say that it's the gluten-free diet for sure, but I never was able to have this kind of remission except with Remicade. If I eat gluten, milk, or even some "gluten-free" flours I do have IBS issues that feel like they could lead to UC issues. So, I stay away. Cheating once in a while on something small isn't the end of the world -- it feels like I'd need a continued daily diet of the bad stuff to get back to a flare.

Even I am hesitant to proclaim any exact results, but I figure after a few more years if things stay okay then I can really say I'm onto something.
Posted 5/21/2016 4:08 PM (GMT -5)
Hi T- So relieved you are holding steady on the UC front!! And managing with the pains. I really hope they subside. And you stay flare free! (I think I was ok for ~14 months after stopping remicade before I flared again.) It's great that you think the GF diet is working so well. Btw my docs now acknowledge that a certain % do have pains like yours from remicade.

Entyvio seems to be working for me as a maintenance medication. Some small things here & there leave it as an open question but I'm sticking with it for now. Been on it since early October. I still eat pretty plain stuff (nothing uncooked or hard for me to digest). Steering clear of all dairy and of carrageenan always. Every so often I get a rush of fear of flaring, since the one from last summer was so bad. And I've gotten in the habit of dinner being my main meal of the day (just in case...).

So I think there are lasting psychological and self-management effects of all that I've been through. Maybe that's the case for all of us who have tried & failed many drugs--or endured their side effects, or just had to live with the unpredictability of UC. Overall the past several years have made me not take the good for granted and persevere in dealing with anything that seems challenging. Some inner strength in this endurance test....
Posted 5/23/2016 12:51 AM (GMT -5)
Content -- if you ever come across a doctor who really knows their stuff about Remicade causing pains -- anything else you can find out and relay to me via the "Stopped Remicade, So Sad" post we had going would be great (I'm pinged by email whenever that is updated).

Nobody knows why I've hurt so badly. Nobody knows why I still hurt. I'm very thankful for the opportunities I do have for flexibility in my life at present. I'll get back to more discovery on it after I take care of some career things -- but anything about the exact cause of the pains, and how to potentially treat them -- is very welcome.

I may go back to Mayo sometime -- maybe. Not really sure where else to search!
Posted 5/29/2016 11:47 AM (GMT -5)
Hi T - Will ask at my next rheumatology appt. My impression from our recent conversations is an increased acknowledgement of arthralgia based on patient experiences with remicade, and that GIs were starting to accept it as a reality.

There's a lag time of course with publication in journals. Rheumatology journals were where I found the first documented cases of adverse affects of anti-TNFs including severe pains like ours. Those articles are still out there, but I haven't checked for more recent ones since I got off remicade. For what it's worth, I'm happy to report I haven't heard of pains like ours (or lupus) associated with Entyvio.
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