Flare while on Budesonide...?

[DD]

Hello MC family. I have a question for you "CC'ers". I was diagnosed July 2017. At first I refused to go on a steroid so I 'managed' my symptoms with diet changes (no gluten, no dairy, no soy, no eggs, no oats, no corn, no almonds, no tuna, reduced sugar) and with Pepto occasionally. Did okay, but cramping came back and D. It felt like I needed a little push to get to remission so I talked with my Gastro, who is very understanding, and we decided to start Budesonide on a low dose, 3 mg/day. It was working great. Everyday 1 pill for 8 weeks, then I started to tapper 1 pill every other day for 6 weeks, then BAM! FLARE. It came out of nowhere. I didn't change my diet. The only things I can think of that might have triggered it was the dental cavity I got fixed (the numbing meds ?) or my hormones...started my period a week after my flare started. It's worse now than it was before I started the steroid.

Is this normal while on Budesonide? Any ideas?

Thank you for your insight.

DD

[Gabes-Apg]

Hi there,
Are you taking Vit D3, magnesium??

Are you taking active B vitamins such as B6, B9, B12??

Reason I ask, hormones deplete B6 and magnesium
These nutrients are pretty crucial for things like balancing histamine, methylation cycle, etc.

Magnesium is also key for the body to use Vit D3 properly, and this is crucial for calming inflammation.

We have also found that even taking medications like budenside, people need good levels of Vit D3 and magnesium to get optimum benefit from the meds.

The fact that you are reacting, may mean that there is something in your diet or environment that is causing excess inflammation. Also have a good look at ingredients, bathroom products, make up etc for gluten, soy etc

[DD]

Hi Gabes, thanks for your quick response.

Yes, I'm taking 6000 mg of D3 with 100 mg of magnesium (Doctor's Best)...maybe I need more D and magnesium? I didn't want to overdo it with magnesium, but my calves cramp every now and then when I'm sleeping. Ideas?

As for B vitamins, I just got some blood work done and my B's looked good. Hmm, wonder if I should take some anyway. They are water soluble.

And yes, I'm wondering if it is environmental, thank you for the reminder on that...last year at this time I had D. I will look again at ingredients.

I also have been doing some research on histamines and came across Quercetin...have you or has anyone else had experience with this? I got 'Now Quercetin with Bromelain' to try when things calm down a bit.

Hugs to you all. Thank you!

[Gabes-Apg]

Do not increase Vit D3,
I would increase the Mag intake. Daily requirement is at least 350mg per day. The leg cramps are indicator you are low. If you are worried about taking more orally, then topical application has worked well for many here ...

On enviro /histamine side, if you take some antihistamines and flare settles, then that will be big clue.
Taking P5P, active form of B6 and getting magnesium levels up will help treat root cause of excess histamine.
Taking antihistamines in meantime will help....

It can take minimum of 8 weeks to resolve deficiencies. (It took me 6 months to resolve my magnesium deficiency with high doses/topical application etc. )

Quercitan is known to be helpful for histamine issues, but not so much when MC type inflammation is occurring. Root cause is you are low on nutrients that moderate histamine levels, so best to treat root cause...

[tex]

DD,

If you can't get your system to calm down, you may have to go back to a full dose of budesonide in order to get it under control. Then, when you do the taper, consider that you might be one of those individuals who has to have a continuous maintenance dose of budesonide, and stay on 3mg per day unless/until you can figure out what is causing the problem. Since a long-term treatment with 6 mg of budesonide has been shown by published research to be safe, 3 mg per day should not pose a long-term problem.

Tex

[DD]

I am SO grateful for this forum! Thank you for your help in all this. Step by step.

[Lattelaura]

Hi All,

I was diagnosed with LC in middle of January and was put on Budesonide 3 mg, 3 a day and it helped big time. In June they wanted to taper me to 2 a day and on the third day is was not working, so I went back to the 3 a day. Now it seems to be not working. I do not have the severe stomach cramps like before and only empty my self in the morning with D and dull cramps most of the time.

I am on the stage 1 diet mostly & added avocados. I have a lot of stress but that has been there since I was diagnosed. I have a mother with dementia and going thru a rough time in a relationship. I do have histamine issues. Claratine does not work and the other over the counter antihistamines make me so out of it half of the day, even when I take them at night, make me not want to take them.

I am taking about 600 mg of dotor's best Magnisium and Vitamine d 4000.

My testing at EnteroLab were Quantitative Microscopic Fecal Fat Score 699 Units (Normal Range is less than 300 Units)
And Dairy was a high number, I have been off of Dairy for 3 years and off wheat since the start of my treatment for LC, not sure what to do to help me get better? And I do have some leg cramps. And I am down to 100 lbs. Started at 117. and was up to 103 until things went sideways again.

Thanks,

[tex]

My testing at EnteroLab were Quantitative Microscopic Fecal Fat Score 699 Units

That's a fairly high score, suggesting a lot of small intestinal damage. When did you do that test? In January, 2018?

Something seems to be amiss with your diet if you relapse at 6 mg of budesonide, but perhaps the budesonide has just stopped working for you.

With that much intestinal damage, you may just need more time for the diet to heal your digestive system. There don't appear to be many other options in your case. Stress is probably your major issue, but I would also look very closely at your diet to see if there is any possibility of cross-contamination with gluten.

If you've been on 600 mg of magnesium glycinate for over 6 months, maybe it's time to lower that dose to 300–400 mg. If you only weigh 100 lbs, that's still enough to cause diarrhea, especially if you're sensitive to it.

Tex

[brandy]

Agree with Tex about the mag glycinate. Try the 300 or 400 mg or some days do epsom salt baths in lieu of oral or use the rub on magnesium some days in lieu of oral.

[Lattelaura]

Thanks for the thought of reducing the Magnesium, I will try that. The testing was done in March of this year.
I also wondered about B vitamins, I see that Gabes posted about that. What kind is good and how much, maybe it could benefit me also?

Thank you all for being here, otherwise this would be a hard and lonely journey.

Laura

[tex]

Hi Laura,

Many of us take a product from Thorne Research called Methyl-Guard. If we're sure we have methylation issues, we take Methyl-Guard Plus, which is about twice as potent. But unless you're pretty sure that you have methylation problems (or you're unable to reach remission even though you've been faithful to the diet for a long time), it's usually best to wait until after you're in remission before adding supplements such as these to your routine. As a general rule, when trying to recover from MC, less is more, and the fewer foods (minimize variety) and supplements we put into our mouths, the faster our digestive system will heal.

Yep, microscopic colitis is a super lonely disease. After my GI doc told me there was nothing more he could do for me, and before I discovered Sally's original MC discussion forum, I felt like the loneliest human on earth. I wondered if I were the only person in the world who had an untreatable disease with such debilitating and disgusting symptoms.

Tex

[Lattelaura]

Hi Tex,

Thanks for the information. I just have to be patient and keep eating the right things. I really think the stress is causing most of my issues, so I will try and work on that too.


You are all wonderful people to share your stories, time and knowledge.

Laura