MC for Years. MD wants to try Xifaxan

[DJ]

Hello All,
This support group helped me to identify multiple food sensitivities and survive MC. I've had many bouts with successful use of Entocort but the repeated watery D, extreme weakness, and resorting back to a diet of nearly 100% meat is hard to take. My doctor lectures me on the harm caused by steroids (Entocort) but I have no choice! Being bedridden with weakness and eating bacon to survive isn't exactly a recipe for health either. Beyond this, I was in a near-fatal car crash 15 months ago and had to learn to walk again. Inactivity is my enemy.
My GI recently retired. I'm not crying about it. The short story is that her replacement wants me to have repeat biopsies for MC and to try Xifaxan. He said that he doesn't feel that the findings of my previous doctor are entirely conclusive for MC. Really? I could be the poster girl for MC. Initially and during relapses I reach the point of pooping water and chewed food. I am bedridden. Entocort helps. I have a long list of food sensitivities, medication sensitivities, and medication allergies. I come from a family with lots of autoimmune illnesses. I am an older female. I have a history of taking NSAIDs and PPIs. Throughly eliminating gluten and other foods helped.
Does xifaxan help people with MC?

[brandy]

Hi DJ,

Sorry you are suffering. If you try xifaxan try it on a weekend when you are home in the house and off of work. I tried this early on (before my MC diagnosis.) I made a mistake of taking at at a restaurant and then having to drive home. On the way home I had the worst cramps I have every had in my life before or since and it was rough since I was driving. That said.....it sometimes helps D.

If Entocort works, why not use it and work down to a low dose.

Colonoscopies are not without risk. Anesthesia brings risk of death (think Joan Rivers and endoscopy) and there is always the risk of punctures during colonoscopies.

Also...consider Uceris.

Folks have also been using cholesterymine lately (not sure if I spelled that correctly.) Polly thinks it is pretty benign.

[tex]

Hi DJ,

Sorry to hear of all the problems. I second Brandy on Entocort if it works for you. And please consider her suggestion about Uceris. Uceris is a form of budesonide and it stays 100 % in the colon, so it is claimed to have no side effects at all.

As far as I can tell from all the members who have posted here about using it, xifaxan may help for a week or two, but not much longer. It doesn't help some people at all. Some tried it several times, with no luck. It was originally promoted as a treatment for traveler's diarrhea. MC is simply out of it's class.

I agree with her about repeat colonoscopies by doctors who doubt an MC diagnosis, also. Such doctors simply do not understand the disease. No one is ever misdiagnosed with MC. Doctors might miss MC, but they will never diagnosis it when it isn't present.

Tex

[DJ]

Hello Tex!!! I think of you and speak about you often. I was not aware that Uceris has a lower systemic impact. Hi Brandy, thank you for your good suggestions. I told my new GI that when I relapse, I move down from 9mg of Entocort as quickly as possible by making my own capsules, allowing me to move from 9mg to 7.5mg, then 6mg, 4.5mg, 3mg, and 1.5mg. In total, I use less medication this way. I asked my doctor if I could stay on a maintenance dose of 1.5mg for a while and he pointed out how harmful steroids are and said it's ok. He also said that steroids can have a "powerful placibo effect". I wanted to poke his eye out.

After I told him that I have quality of life issues, he suggested that I stay on the 1.5mg dose for three months and then see him again to decide if I am ready for another colonoscopy. He said that after taking biopsies he would like to start the xifaxan. He said, "How would you like it if you never have to take steroids again?" Nice to imagine but ...

I am not ready for a colonoscopy. My pelvis is held together by large screws, one across the width of my pelvis and some coming up from my pubic area. I don't want anybody poking things in my body unless it's absolutely necessary AND I need an emotional rest! This new Gastro encouraged me to come off of Entocort quickly (after he saw me during a relapse) while a cardiologist told me to take 81mg of ASA even though I told him I could not because of my condition. The cardiologist and my family doctor said that 81mg of ASA should not cause a problem. I disagreed. I relapsed again in less than 2 weeks. So, I reached a point where I could not eat healty food (again) and I was so weakened that I could not press forward with my physical therapy. I need to push back now.

I plan to speak with my excellent pharmacist about Uceris. I tried Cholestyramine at some point. No luck with that.

Thanks a million!!

[T]

Entocort never worked for me and my new GI put me on Uceris (have no idea why) and its been 4 months and in one big flare now and going to stop Uceris it may help some people but not me dreading to find another dead end GI and my last colonospy I ended up with A tear and he said I just put A clip on it and you wont even notice it but back to the point if Entocort works for you Users might do the same but the treatment for Users is for 8 weeks and why in the H did my GI gave me A pres for 1 year I have no idea

Terry

[tex]

Terry,

The labeled treatment (IOW FDA approved treatment) for all budesonide is for 8 weeks. That's chiseled in stone, because that's how CibaGeigy applied for the label when they originally got the approval. It's too expensive to apply for a label change, so it's locked on that treatment. Your doctor gave you a 1-year prescription because that's the maximum length of time for which a prescription can be written and your doctor knew that if you were going to use it, you would need it for the long-term. It probably never occurred to him that it might not work for you.

Tex

[DebE13]

I tried Xifaxan and it did nothing at all for me but then again, nothing at this point helps, so I may not be a good example. I'd stick with what works. I never liked the idea of taking steriods of any kind but there is a difference between entocort and prednisone. The xifaxin isnt a good long term solution because once you go off your symptoms most likley will return and then you go another round. That was the way the nurse explained it to me.