Budesonide taper-no remission

[Jeannie54]

Hello potty people! I need some of your great wisdom. I have been slowly tapering Budesonide for months, down to 3 mg every other day, and have been there for almost 3 months. I would like to move to 3 mg every 3 days, but my problem is I am not in remission due to gluten cross contamination after over a year taking it. I'm not sure the Budesonide did much good for me because I never had normal BMs. Would it be unwise to continue the taper at this time? I am having some really bad days, some not so bad, but am taking alot of Imodium. I don't want to cause a full on flare. I will need to refill my prescription soon and don't want to if I don't have to since it is so expensive. We did rid our house of wheat flour and I have my own cookware and space in the kitchen.
I appreciate any ideas that you have.

Thank you,
Jeannie

[tex]

Hi Jeannie,

I'm not sure how to respond, because if you're not in remission now, I doubt that remission will magically appear if you taper any further. So from that viewpoint it's kind of irrelevant whether you continue the taper or stop at this point, because you're way past the risk of adrenal damage due to stopping too soon. However, on the other hand, every time a patient stops and restarts a corticosteroid treatment, the drug becomes less effective each time a new treatment is begun. So if you feel that you may want to take budesonide in the future, it's best to never stop taking it, even at a very low dose, because that will preserve its efficacy.

if you had gluten cross-contamination, that can prevent budesonide from working, so it may have been helping you,and you just didn't realize it. Now that you've eliminated gluten cross-contamination, you might be able to heal, although it may take a bit more recovery time. A higher dose of budesonide while you continue to recover, might be able to mask the symptoms, but whether or not you continue to take budesonide, and what the dose should be, is your call.

I hope this helps.

Tex

[Jeannie54]

Thank you Tex. The reason I want to taper and stop taking Budesonide is because it is so expensive. Plus I feel like this past year was wasted eating only a few foods, thinking I was healing, only to find out that I had gluten cross contamination the whole time. The side effects while on the full dose for about 9 months took a toll on my body. I have osteoporosis and that didn't help. If you don't think that continuing the taper would throw me into full blown flare, watery D 24/7, then I would prefer to stop taking it. So many people on this board are able to control their symptoms without strong meds and I am hoping that I can do the same.
Thank you as always for sharing your knowledge. I appreciate you so much.

Jeannie

[Gabes-Apg]

given the issues of pricing of the medication - i would strongly encourage you to embrace the low inflammation eating plan and lifestyle changes we recommend.
many people here have gained good stable remission via this approach.

further to that - there are other medication options that work for many, that are not as expensive - have you read about these?

[Jeannie54]

Thank you Gabes for your response. I have read about other meds/supplements including Histame, and LDN, both of which I am interested in trying if I can get over the fear of trying something new! I do use magnesium spray and take a vitamin D capsule daily. Have been doing that for almost a year now. I am following the anti inflammatory diet, and I did do the Enterolab testing which was very helpful. I know I just have to be patient and not get stressed when I have a bad day. Our adult son lives with us because he has serious health issues so stress is an issue for me. But I am trying! Thank you Gabes for sharing your knowledge. I do a lot of reading on this website and you have been so very helpful.

[Gabes-Apg]

how much Vit D are you taking? at this stage (and with the stress) i would suggest 5000 iu min up to 10,000 iu

I used podcasts / audiobooks and various other relaxation aids to help with the stress.
in the morning first up I play positive encouraging type tracks to put my mind in good space before work

after work it is more about relaxing / nurturing to relax after the day. if it has been a bad day I do a 20 min magnesium foot soak
on the weekend while i do chores these are also playing.

if you play the podcasts on a speaker -this may also help your son at the same time

cholestraymine is an affordable medication that has worked for many as well

[Jeannie54]

I take around 350-400 mg magnesium per day and I use the spray, so I need to more than double that! Maybe I should use it twice a day instead of trying to get it all in at once. Soaking my feet is a great idea, too. I tried cholstyramine 3 different times and it always gives me bad stomach pains. I even tried Sandoz brand that Tex recommends.
Thank you for podcast and audio books suggestions! I do listen to podcasts, especially at night if I can't sleep. I haven't tried audio books, but that is a great idea. I have been doing a little yoga (youtube) and walking outside when possible for relaxation. I read my Bible and pray alot and that really helps too.
I had a pretty good week until this afternoon after dinner. I felt nauseated, then cramps, then WD 3 or 4 times. No apparent reason! I try so hard to just take it in stride when that happens, but sometimes its just so overwhelming and frustrating. This is my 4th week taking only 3 mg of budesonide every third day. Maybe I should go back to every other day. I don't have WD very often, usually just D.
Gabes, I don't know how you work every day with this disease! You must be very strong! Thank you again for your encouragement. It means a lot to me.

Jeannie

[Jeannie54]

Sorry Gabes. I forgot to mention that my husband and son eat gluten, so that is not easy to manage. I read where you suggested having a separate prep space in the kitchen, so I do that, plus I have my own utensils, dishes, pans and I wash them by hand separately. I worry that I come into contact with bread crumbs or something without realizing it. That could be contributing to my inability to reach remission. I have threatened to get my own apartment haha!

Hope you are having a nice weekend!
Jeannie

[Gabes-Apg]

Jeannie

at the time i was diagnosed, I was not only working full time but travelling for work
8 months after diagnosed i managed to survive a 3.5 week work trip to france (transit time from Aus to location in france was 36hrs!)

i have recently changed jobs and I am doing small amount of work travel for the first time in 8 years and doing work dinners. it is way way easier now with food options when eating out.
a key part of my survival is cook ups on the weekend, i have all my meals for the week pre made.

with the cholestryamine - did you try 1/4 dose rather than full dose?

[Jeannie54]

Gabes, What you have accomplished while having this disease is very impressive! You give me hope! I did not try cutting down the dosage of cholestyramine. I didn't think it would still be effective. I will try that! Thank you so much!
Jeannie

[brandy]

Jeannie when I cook my boyfriend eats what I eat which is GF . It makes things a lot easier and less work.

It was a very slow evolution. I didn't say anything. I just cook and serve. He now uses my GF bread. I never said anything....it was the only one in the house.

He gets pizza etc at lunch at work.

[Jeannie54]

Oh Brandy I wish my husband and son were willing to eat what I eat! Maybe when I can expand my diet a bit, they will be more willing. My husband did give up baking his beloved sourdough bread for the time being, so I am thankful for that!:) And they do cook their own food which is another thing I am thankful for :)
Thank you for the suggestion!
Jeannie