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Posted 6/26/2014 10:32 PM (GMT 0)
Gumby, I wonder if every single person who was diagnosed with CD was prescribed biologics would the surgery rate go to zero?

There isn't even one chance in a million this would happen. I'm surprised you would even ask this, to be honest.
Posted 6/26/2014 10:43 PM (GMT 0)
Huh??? I didn't ask that. Kazbern said the surgery rates for CD have decreased since the introduction of biologics and I was trying to make the point that if our poster takes Pentasa and not biologics then the decrease of the surgery Crohn's stats don't apply to decreasing his overall risk. I absolutely know that biologics don't work for everyone....isn't it only around 40-60% success??
Posted 6/26/2014 10:51 PM (GMT 0)
Sorry, I was quoting what kazbern said and replying to her.
Posted 6/27/2014 3:24 AM (GMT 0)
NCOT, I wasn't asking it as if it would really happen, just thinking theoretically about what could be the outcome of such a thing.
Posted 7/2/2014 2:43 AM (GMT 0)

kazbern said...
Actually, Pentasa releases continuously throughout the digestive tract, so it might be the right med for you. In any case, there aren't many downsides to Pentasa so it's worth a shot. If it doesn't help then you can move on to the more serious meds.

You wrote that you have IBD related rheumatoid arthritis. Let's be clear here - rheumatoid arthritis is a serious autoimmune disease that causes irreversible damage to joints and is not caused by IBD. There is a kind of arthritis related to IBD - it's called enteritis arthritis and is not damaging to joints. An effective treatment method is sulfasalazine, which I've been taking with success for about 7 years now.

Welcome to the forum!

Sorry to bring back an old thread, but I heard back from rheumatologist today, and he says that because my blood work didn't show any inflammation, he does not think this is IBD related arthritis. Even in my worst flare, I've never had blood work come back showing any inflammation. Could this also be the case with the arthritis? I can't imagine that this could be anything else. It started bothering other joints (primarily my knees) around the same time my last crohns flare got bad. My wrists have always bothered me, the same way my stomach has always bothered me, but my knees are awful and have been since I started achieving remission from the crohns. I feel pretty defeated by all of these normal test results.

I tried to do my usual research on enteritis arthritis, but didn't find much. Do you have any sources of information about the arthritis or personal experience information?
Posted 7/2/2014 12:11 PM (GMT 0)
I call B.S. on the bloodwork. My worst ever CRP was 4 and that was way before my joints started hurting. I have had plenty of gut inflammation visible on scope with normal CRP.

http://www.patient.co.uk/doctor/Enteropathic-Arthropathies.htm

an old paper: http://ard.bmj.com/content/23/1/64.full.pdf

a specific kind of inflammation: http://en.wikipedia.org/wiki/Enthesitis

http://www.ncbi.nlm.nih.gov/pubmed/21210292

http://www.annalsgastro.gr/index.php/annalsgastro/article/view/915/720

http://www.medscape.com/viewarticle/750045_5
Posted 7/2/2014 4:12 PM (GMT 0)
Thank you so much! And I agree. My disease has only showed up on one or two of the many tests that I've had. I am obviously not one that can be monitored via tests, unless we find the right one. My GI said that the ibd related arthritis can either work with the crohns, as in flare when the crohns is flaring, or that it can work independently from the crohns, and flare when the crohns is in remission. I have not read the links that you provided yet, which may answer this question, but is my GI at least on the right track with that? I had so much faith in my doctors, but they are beginning to lead me astray.
Posted 7/2/2014 6:20 PM (GMT 0)
Welcome to the forum,

Treatments can be confusing, and we all have our experiences with the various medications and they can be very different. I used Asacol, the mesalamine dose designed for the colon area, for around 9 years. It never helped my enteropathic arthritis but neither did 6-MP. I was thinking that Pentasa was designed to be released in the small intestine, but it's been a while since I've studied up on it. You can read the full prescribing information of many meds at the NIH's DailyMed:

http://dailymed.nlm.nih.gov/

Sulfasalazine, which Kaz has mentioned that she takes, breaks down in the gut into mesalamine and its sulfa component. So if you're taking sulfasalazine, you're taking mesalamine. You should never take both together because of this, but any doctor would know this. It's believed that the mesalamine is the beneficial part of that drug though I don't know if that's still the belief since it's been a long time since I've read up on it, as I've already said. Sulfa drugs make a lot of people sick including me and that's why these drugs were designed--to remove the sulfa part. That way they could be tolerated at higher doses also. I could take mesalamine meds but I can't take sulfa drugs, including sulasalazine.

There are studies that were done a while ago showing that mesalamine meds didn't fare better than placebos which may be one reason GIs are skirting them, and of course because of the biologics now available.

Remicade goes a little farther back than 2000. I think I was first recommended it by my GI in the mid to late '90s.

"Major abdominal surgery" is a subjective term, which probably should (or may) have been further defined in the study. One of my surgeons once told me when it comes to giving general anesthesia and cutting someone open, there is "no such animal" as "minor surgery" even though the term is commonly used.

Anyway, I hope you can find the best approach for your situation. -Joy
Posted 7/2/2014 6:28 PM (GMT 0)
You can certainly take a 5-ASA along with sulfazine; I do it and have done so for many years now. Several people here and on the UC forum are also following this path.

It is true that sulfasalazine breaks down into multiple components in the gut, one of them being mesalamine. The story behind using sulfazine (same as sulfasalazine) for enteritis arthritis is a good one.

As told to me by my GI, sulfazine was one of the earliest nonsteroidal meds approved for rheumatoid arthritis. At that time ('50s) there was not a good understanding of the connection between inflammatory bowel disease and arthritis. Some people who took sulfazine for their joint pain coincidentally noticed an improvement in their gut problems. So scientists were aware that this med treated inflammation in multiple areas without really understanding why.

Eventually sulfazine was not prescribed for rheumatoid arthritis because other, more effective meds came along, and it was difficult for some patients to tolerate. GI doctors were working with mesalamine directly, and didn't use sulfazine because it was difficult for some patients to tolerate. A few years ago, some bright bulb figured out that hey, there are these people who respond to mesalamine for their IBD and also have joint pain - would sulfazine work for them? The regular mesalamines don't touch joint pain, but sulfazine does.

I started using sulfazine around 2008 and I think that was the beginning of the resurgence in interest in this medication. I do not believe scientists understand the mechanism that makes sulfazine effective in treating joint pain associated with IBD.

Posted 7/2/2014 6:29 PM (GMT 0)
Sorry, I missed the second page of the posts. You may try looking up "enteropathic arthritis" or Crohn's-related arthritis/Crohn's arthritis. CCFA.org will have information on this type of arthritis. As to my arthritis, it shows positive on ANAs, negative on the rheumatoid factor, but I wouldn't be surprised at yours not showing up on tests especially if you're taking meds to control the inflammation as it can mask it.

Your description of arthritic symptoms is in keeping with "classic" Crohn's-related arthritis, which afflicts about 15 percent of patients, if memory serves.
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