Wondering When to Try stopping Budesonide completely

[grannykathy]

Its been 3 weeks since I have had any D. During this 3 weeks I have gone from completely constipated to going every other day, but small and hard, to going every day, still small and hard, and now every day (sometimes twice) and getting more toward looking "normal". Not completely normal but better every day.

During this same 3 weeks, I have gradually gone from 9 mg budesonide a day down to 3mg every 3rd day. That's where I am now and wondering how I know when to jump ship and just stop. I'm scared to because in the beginning when I got constipated I stopped altogether going straight from 9 mg to nothing and of course D came back. So I want to be cautious, but just don't know how to decide when its going to be the right time.

PS - I have been gluten free and dairy free for almost 5 weeks! (a few cheats, but few and far between) They say I will have my results from Enterolabs by this Monday.

[tex]

As frustrating and discouraging as it is to have to start a treatment over, I believe that if I were in your position, I would err on the side of caution by going to one capsule of budesonide every four days, and then one every five days for a couple of weeks or so before completely stopping. Look at it as cheap insurance. Dragging out the tapering process too long won't hurt anything, but stopping it too soon can cause a relapse.

But that's just my opinion.

Tex

[grannykathy]

tex
I think you are are right Tex. And its hardly costing me anything for Budesonide at this dosage. So I am going to take my time. Meanwhile I will get my results from Enterolab and figure my diet out. I finally feel like I'm getting somewhere. :)

Although I'm still discouraged with the weakness but I think some of that may be the UTI. My blood pressure is running really low - like 110/50 and I have stopped all bp meds. Its weird, normally without my meds, I would be in the 170/75 range. But anyway low bp makes me so weak I'm worthless.

[tex]

Corticosteroids often cause hypertension. So weaning off a corticosteroid can have the opposite effect. Also, a magnesium deficiency is associated with hypertension. When I had an acute magnesium deficiency a few years ago, my BP was up in the 160—180 range. Taking a magnesium supplement lowers BP so much that it's possible to overdo it. I only take 300 mg of magnesium now. When I was taking 500—600 mg my BP eventually got too low (systolic pressure regularly under 100).

Tex

[grannykathy]

Wow! That is so interesting to me. I had no idea that magnesium deficiency caused high blood pressure. So taking magnesium can replace a person's bp meds then. BUT too much can lower too much. That is good information for me. I think I will lower my dose a bit then because when my systolic is below 130 I feel very "unwell". My recent bloodwork showed my magnesium to be 1.9 which I believe is in the normal range.

[tex]

The so-called normal range for magnesium was based on a test population that was 80 % magnesium deficient, so it is biased toward the low side. BP response to magnesium is not necessarily related to serum magnesium level — it's the cellular level that matters, and it usually takes months to increase the cellular level significantly. Normally, only about 1 % of the body's magnesium is in the blood, so the serum magnesium test that all the doctors use is a very poor indicator of actual magnesium level in the body because magnesium is an electrolyte, so the body closely regulates the blood level to keep magnesium in a relatively narrow range. That's why over 80 % of the general population is magnesium deficient, because the test is worthless unless the patient is almost completely out of magnesium.

The RBC (red blood cell) magnesium test gives a much better indication of the actual magnesium level but doctors rarely order it unless requested to do so. And even that normal range is on the low side because it was originally based on a population that was 80 % magnesium deficient. Dr. Carolyn Dean addresses this issue in the article at the link below:

Magnesium RBC Blood Test

Virtually all mainstream doctors are missing the boat on magnesium levels. But that's job security because all autoimmune disease (and cancer) is associated with a magnesium deficiency.

6 Key Nutrient Deficiencies Linked to Autoimmunity

Magnesium and cancer: a dangerous liason.

Tex

[grannykathy]

Thanks for all that! I will read up and tell my family they need to take their magnesium!

PS - I keep reading about L-Glutamine. Is that something I should be taking now or maybe in the future?
Also when can I add B vitamins back in? I use to take them but have been only taking the D and Magnesium as suggested for the last couple of months.

[tex]

L-Glutamine is claimed to help the immune system, leaky gut and all sorts of things. IMO it may help if you are a weightlifter because it primarily helps to rebuild smooth muscle tissue. The reason why I doubt that it is useful for treating MC is because most of those claims are unproven and unlike Crohn's and UC, MC does no damage to the smooth muscle tissue in the intestines.

You might be healed enough to add some B vitamins if they contain only safe ingredients.

Tex

[grannykathy]

Thanks for that info. Meanwhile, I just found this:
"Magnesium supplements can interfere with amiloride, oral diabetes medications and tetracycline or nitrofurantoin antibiotics, warns the University of Pittsburgh Medical Center."

Nitrofurantoin is the antibiotic I'm taking for my UTI. So maybe I should stick to the external spray while on the antibiotics. Problem is I've already taken 3 of the 5 days worth of the antibiotic and have been taking magnesium every day. Hope I don't end up having to repeat the antibiotic if the UTI doesn't clear.

[tex]

I read that article. First off, they were too dumb to recognize the huge differences in the absorptivity and risk of causing diarrhea of the various magnesium compounds, pretending instead that all magnesium supplements are the same. They are not. Secondly, they appear to be concerned about megadoses of magnesium, not the kind of doses that I recommend. I normally recommend about 200–400 mg of magnesium glycinate, depending on the circumstances. That's within the RDA, and it will not cause diarrhea for 99 % of users, nor will it interfere with anything except magnesium deficiency.

That article appears to have been written for someone who knows virtually nothing about personal healthcare. The members of this forum are light years ahead of that naïveté.

Tex

[grannykathy]

Ok, so you're saying I shouldn't worry about my anti-biotic then. Thank you. One of these days I will learn not to believe everything I read just because it sites some medical institution. I will leave you alone now. I've bothered you enough for one day. :)

[tex]

As long as you aren't taking more than the RDA of magnesium glycinate, you're good. Magnesium oxide can decrease levels of nitrofurantoin by reducing absorption of the nitrofurantoin, but no MC patient is likely to take magnesium oxide because magnesium oxide is a laxative. That's how it decreases nitrofurantoin absorption, by causing diarrhea. If you're concerned, or you want to to take magnesium oxide for some reason or other, just be sure that you don't take the magnesium at the same time that you take the nitrofurantoin.

The trouble with many articles on the Internet is that even when they're true, they are only true in certain situations, so they can lead to a lot of confusion. Most things are not as simple as they seem on the surface.

Tex

[Pebbledash]

Glad I read this last post as I have been taking Magnesium Oxide for the last year or so . . .