Update and alternative treatments...

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CathyMe.
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Update and alternative treatments...

Post by CathyMe. »

Hi All,
I'm still flaring, even with day #4 of 9mg.budesonide. I will call my GI on Monday to speak with her but in the meantime, I have scheduled an accupuncture treatment on Tuesday and will be meeting with a dietician on Tuesday as well to discuss MRT testing. I found out my insurance will cover both the MRT testing (YES) and they pay for alternative treatments as well so my accunpuncture will be covered. She is a terrific lady and helped me with my insomnia several years ago and she suggested that it would work better if I was in a flare up so there you go! Will update after my treatments. God I hope this budesonide kicks in! Trying to enjoy the nice cool, crisp weather that has started in the northeast. Anyone watch football?? Go PATRIOTS!!
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Post by Polly »

Hi Cathy!

Sorry to hear you are still flaring, but I LOVE the take-charge tone of your post. There is no doubt in my mind that you WILL get to the bottom of this. That's great news that MRT is covered - I found it to be quite helpful. Sometimes it takes a week or two for the budesonide to kick in, I believe. Hang in there! GO RAVENS!

Love,

Polly
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JFR
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Post by JFR »

Cathy,

Sorry you are still having trouble. I am considering MRT myself. Seems like lots of people find it helpful here. My diet's pretty limited already but of course it is still possible that something I am eating is causing trouble. I will be interested in how helpful you find it and also whether you find acunpuncture beneficial, something I also have considered.

I love this fall like New England weather. It's my favorite time of year. Perfect day for the Patriot's home opener. Polly, really, the Ravens? :)

Jean
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Post by jmayk8 »

I hope you start to feel better soon.
Jenny
ps I <3 Tom Brady!!!
CathyMe.
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Post by CathyMe. »

JFR wrote:Cathy,

Sorry you are still having trouble. I am considering MRT myself. Seems like lots of people find it helpful here. My diet's pretty limited already but of course it is still possible that something I am eating is causing trouble. I will be interested in how helpful you find it and also whether you find acunpuncture beneficial, something I also have considered.

I love this fall like New England weather. It's my favorite time of year. Perfect day for the Patriot's home opener. Polly, really, the Ravens? :)

Jean
Hi Jean,
My diet is very restricted @ this point also, which is 1 of the reasons why I hope the results from MRT can point me in the right direction. I also wanted to thank Mary Beth for recommending a dietician. Thanks to everyone!
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nancyl
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Post by nancyl »

Cathy,
I hope your flare calms down soon. It took me over a week for the Entocort to kick in, so give it time. I also see an accupuncturist and I think has helped.

Looks like another New Englander here. I am from MA. I am not a football fan - sorry! The rest of my family are fanatics.

Jenny, how many women do you think are in love with Tom Brady??? I know my daughter is.

Nancy
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carolm
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Post by carolm »

Cathy,
I hope your response to acupuncture is a rapid as mine was. I am now getting acupuncture to help with my inconsistent motility and cramping. That just started on Friday the 7th and for the first 2 days Norman visited--- could have been coincidence-- time will tell. I've gone back to having acupuncture every other week.

Keep us posted and good luck--
Carol
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Sue777
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Post by Sue777 »

Another New Englander (Connecticut) and another new Entocort fan. I thought I felt a sense of "calming" in my gut the very first day I took it, but the real results didn't come until about 10 days later and, I still can't believe this, but I had a Norman at the two week mark! I really thought I'd never see one of those again!

As a matter of fact, I've only been on it, I think 5 weeks, and I am actually constipated! Doc said to drop down to 2 pills a day now.

Hope you have the same luck, and even moreso, that we can come off the stuff without major blowouts.
Sue
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Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Post by Leah »

It's great that your health coverage is so good Cathy! I hope you get relief soon.
Sue, it's great to hear that the Entocort is working so well for you. Once you start getting constipated, that is the indicator to step down the dose.... but you can do it slowly if you are a little scared of what will happen. You can always start with every other day and so forth. The lower the dose, the slower you should step down.

NINERS ALL THE WAY THIS YEAR!

Leah
CathyMe.
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Another update...

Post by CathyMe. »

Met with the dietician, faxed the order to my PCP (figured she would be more willing to sign off for MRT testing than my GI) she faxed it back and will be getting my blood drawn tomorrow afternoon. I had an accupuncture treatment as well and have set up 1 a week sessions for the next month to see if she can help me. I am still having multiple bouts of WD, on day 8 (I'm glad I write things down) of 9mg. budesonide, major joint pain in both wrists and knees and had both women yesterday suggest that I get tested for Lyme disease. I figure why not, while they are taking blood anyways so will throw that in the mix as well. Just heard back from my GI who suggested that I take just 3mg. budesonide daily.
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tex
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Re: Another update...

Post by tex »

Cathy wrote:Just heard back from my GI who suggested that I take just 3mg. budesonide daily.
If 9 mg isn't working, I don't understand how 3 mg is supposed to work better. :headscratch: :monkey:

The Lyme disease test is probably a good idea.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
CathyMe.
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Post by CathyMe. »

Exactly Tex....I tried going back on the 3mg. day for over 1 week with no success and bumped it up myself with no success so was hoping to actually speak with my GI. Of course, she had the nurse call me back and when I explained this, the phone got very silent on the other end. Does anyone else have the same difficulty getting to actually speak with the GI?
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