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Question about Enbrel (It's kinda Gross)

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Posted 2/27/2007 1:05 PM (GMT 0)
I really haven't been diagnosed with any GI issues but since starting the Enbrel... well, uh, I have had NORMAL BM's... I know this is disgusting but I would rather be asking stupid questions here then getting crooked looks from my doctors.  I really couldn't find anything definitive on the NET so I have just gotta ask. 

For years I have struggled with constipation or very intermittent diarrhea cramps etc. Have a fistula too.  Mostly just the constipation and thin stools... Years... it has become a norm...  at one point I was concerned that there might be a growth or something inhibiting normalcy but I even gave up on that thinking too... well within the first week of starting enbrel I have had real BM's completely emptying... NORMAL... I was kinda wowed by this and how much better that part of me has felt... I know it is gross but it is also amazing for me....

Now to the question... I have never been dxed with Crohn's as constipation is usually not the normal standard though I have seen some in the symptoms list that do have this as the primary depending on what part of the bowel it affects... Does enbrel treat or not treat crohn's?  This is where I am getting differing opinions on the net.  I see that some of you suffer from this as well and was wondering should i discuss this with my doc or not... I really don't want to go through that testing... ICK!  Doesn't seem necessary that I bring it up now that I am doing better in that respect.

Next question:  How long does it take for Enbrel to work.  Or how long did it take for most of you?  2,3,. 6 shots?  My joints are still killing me...  Went back on Pred again... not liking being on 3 immune suppressives with all these sick people around.  Is the chances of Enbrel working decreased because of how long this went untreated?

Thank you all so much... and if you made it this far... bless you. 

Theresa

Posted 2/27/2007 5:11 PM (GMT 0)
Theresa, When you had your fistula, did nobody consider Crohn's? That almost screams Crohn's! Especially when combined with your history of BMs. I can certainly understand not wanting to put yourself through the testing involved in Dx for CD, but at some point, if you begin to suffer problems again, you really should do so.

Most of the literature out there about CD talks all about the horrible diarrhea that we Crohnies suffer. The reality is that this is a myth. Many of us suffer with constipation or alternate between constipation, diarrhea and normal stools.

When I began Enbrel for my AS, my GI told me that I might see improvements in my Crohn's as well. Although Enbrel is not considered a feasible treatment for CD, Humira and Remicade are and these meds are all closely related. It is quite possible that you are seeing the benefits of the Enbrel on your gut. However, Enbrel is really not the best option and therefore, if you do have CD, you could end up with further problems at some point in the future. Untreated Crohn's can bring about a bunch of nasty problems, including more fistulas, stricturing, scar tissue and bleeding.

As far as how long it took for me to see improvement on Enbrel - well that's hard to pinpoint. I'd have to say that it was close to 3 months. However, at the time, I was also in undiagnosed thyroid failure and so I suffered from a multitude of muscle aches from that which may have contributed to the extended time it took for me to notice some improvement.

I hope that you continue to find relief, but caution you to consider following up with a GI.
Posted 2/27/2007 5:17 PM (GMT 0)
Well, that was a long story on the DX part. I went to someone who told me it was a fistula and he doesn't deal with those so he referred me to someone else who actually I didn't follow up on because the exam was well, humiliating. Then the worst of the pain and problems subsided though I still have continuing issues with the fistula... I know I am bad, I don't tell anyone about it because I don't want to go and see anyone about it... Kinda the same way I don't see a female doc either.

Theresa
Posted 2/28/2007 2:24 AM (GMT 0)
Dear Babyloo,

well Crohns Disease is part diaharea, Constipation & inflammation, soo it makes sense to me that Enbrel to a certain degree would help lessen the symptoms, however Chrohns Flare ups can be very horrific, my Bestfreind has chrohns disease, she when she flares up, she pukes non stop for hours...and then loses all her energy, and sleeps all day, to recoup from her CD Flare up...

I Personally take Enbrel, and for me to see results , I believe it was by the 3rd or 4th injection before I started feeling like an human being again...BUt it really depends on your bodys chemistry, Condition, and body make up/DNA...Soo just hang in there.....

I understand ur frustration with the doctor scene, soo I would add in addition to your daily regimen of Medications that u have to take, defitinetly add a holistic approach, such as vitamins, & antoxidants...PLus drink Green Tea w/Ginseng..TAZO is a good brand, and green tea helps with inflammation & omega 3 helps with the JOints & stiffness....

Best of luck to ya...hope u feel better soon
BabZ
Posted 2/28/2007 11:09 PM (GMT 0)
Hey Theresa.. any better yet? Hang in there sweetie..
Posted 2/28/2007 11:30 PM (GMT 0)
Thanks everyone.

Ducky: Thank you for checking up on me. I think I have said this before but it is sometimes nice to hear so how are you doing today? No one asks me that... which is okay really, but once in a while it would be nice to know if someone actually cares... To answer your question I started pred again and am into day 3. I am not getting the relief I used to get from it, but I am getting relief and this is a plus. My fear is that I am not going to get to 85% improvement and I might be looking at 30-60% overall. Which for me isn't very good. No matter how hard I try to put in the past all the poor responses ranging from female issues - mental illness from previous doctors I can't. I think had this been diagnosed sooner, had someone actually thought that I wasn't some crazy, psychotic, hypochondriacal, single woman with a child and excess weight and looked at the real person who had been suffering for the last 10 years complaining about the same thing that I might be much better off right now.....

So, now what?

Theresa
Posted 2/28/2007 11:41 PM (GMT 0)
Preach on! Amen! I went for almost a year and a half before I was diagnosed.. and I look back and think.. you know, if someone just would have listened way back then, I'd still be able to run.. or I could wear different shoes.. or etc etc etc.. but bottom line is, as much as it sucks, we don't have a choice.. all we can do is deal with it and hope for the best.. I have every faith that all of us will get to a point to where we are OK.. not GREAT or like we were before, but at least OK.. I know sometimes that seems unrealistic or un-attainable, but it's not.. you can do, I can do it.. we all can do it.. you just gotta hang in there and NEVER give up.. Don't let this beat you! You can beat it.. I have faith in you. .and if ever you doubt that, come here, and I'll tell you again.. :)

Take good care.. Duck
Posted 3/1/2007 3:46 PM (GMT 0)
I have pretty serious UC, and although I feel the enbrel working for my AS I do not feel any relief from my UC symptoms.
Posted 3/1/2007 4:05 PM (GMT 0)

Same thing here.  I have undx IBD (according to my rheumy), and he told me it's entirely possible that enbrel has been controlling the lower GI sx for the past 9 months.  I know that I've never been as normal as I am since starting the biologics for arthritis.  Now that I'm going off the enbrel for a long while, we'll just have to see what happens GI-wise.  I believe it was Erin who was dx with cd when she went off of enbrel and her lower GI systems went crazy.

El

Posted 3/2/2007 1:02 AM (GMT 0)
babybloo,
I agree with Keah that a fistula most certainly screams Crohn's disease. I strongly urge you to see a GI. It is most important that you set aside the potential dislike of an examination. The reason I say this is because of what has happened to one of our members in the CD forum. I am not trying to scare you or say this is going to happen to you, but you need to know the potential of not getting a fistula properly treated. One of our members is beginning cancer treatment [chemo and radiation] for a cancer that grew out of her fistula. As she explains it, if she did not have the fistula, she would not have gotten the cancer. Please read crohnie42 's post at this link:
https://www.healingwell.com/community/default.aspx?f=17&m=741594&p=2

[edited to make link active --Ides]

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