What to do about Budesonide and Enterlab Testing Question

[grannykathy]

So I've been on the Budesonide for 2 months now other than a period of maybe 10 days in early May when I stopped it altogether. I tried going down to 6 mg for a while but was having maybe 4 episodes of D a day. Have been back on 9mg for a solid week now and still having 2 episodes D every morning. There has been nothing resembling formed. So my question since I am on the restricted elimination diet and have been for 10 days now, should I try weaning myself down on the Budesonide or continue with 9 mg. My reasons for wanting to do that are (1) It's $250 a month after insurance and (2) If it is masking my symptoms then how am I ever going to find out what I can eat. It seems like it is just muddying the waters so to speak. So what should I do? I see my GI again tomorrow. He will probably say stay on 9 mg until things get better but he also said eat whatever you want so...…..
Also thinking at $250 a month - for 2 months worth of pills I could get the Enterolab testing done. Some have mentioned only doing part of the testing rather than all. How much does that cost, AND would it even work since I have been avoiding gluten and dairy?

[Gabes-Apg]

kathy
in my opinion you have answered your own question

the outlay for enterolab to provide you with information on your safest ingredients is a worthwhile investment
MC is for life, a modified eating plan will be a daily requirement 'for life' (medication is not ideal in long term)

yes the tests will work if you have been avoiding gluten and dairy as gluten takes up to 6 months to leave the body
the A and C panel testing will give you information about safest protein/meat sources AND grain sources

information about the costs etc are in this part of the forum
in this discussion, Tex's reply has the link to the tests and this should provide cost information
https://perskyfarms.com/phpBB2/viewtopic.php?t=22259

[Gabes-Apg]

NB: I also saw that you posted the same question in another area of the forum (?duplicate post) - i have deleted it as it was not relevant to that topic area

[grannykathy]

Thanks Gabe - yes that was an accident - I don't know how I ended up on that section of the discussion board.

So lets say I'm not completely ready yet to make the plunge for the testing - what should I do right now about the Budesonide. Drop back to 6 mg or stay on the 9 mg a little longer and see if the D gets better?

I took Immodium this morning after the second round of D.

[tex]

If you lower the dose now, one of three things will happen.

1. Things will stay the same (except that your cost of treatment will be reduced by 1/3)

2. You'll go into a full flare or whatever condition you were in before you started the budesonide (the first time)

3. Something in between those two extremes

If budesonide doesn't work within about two weeks, the chances of it eventually working are slim, but uncommonly, it can start working after a month or two.

Logically, there's no reason to lower the dose unless you have signs of constipation. However, that's only true when it's effective. If it isn't working, or isn't likely to work in the near future, there's no point in taking it.

Tex

[grannykathy]

Tex, Definitely no sign of constipation. Been back on 3 pills for 6 days with basically no change. Usually 2 spells of WD each morning before noon and then no other bms for the day. Plus I am terribly weak then for the rest of the day. So can't see that they are helping and yes the expense is a big factor for me. But my point is, if they are not working and the goal is to get off, don't I need to start weaning down? I know I can't just stop them cold turkey.

[tex]

If you've been taking them for less than 6 or 8 months, you can taper the dose fairly quickly.

Tex