Budesonide Not Working - Should I Stop? & Food R(x)

[seeljanerun]

So I have a dilemma.

I had been on budesonide since November at 9 mg. Back then, I had gone down to about 3-4 semi-formed BM per day along with dietary changes, and my GI told me to go down to 6mg. But as soon as I went to 6 mg, I went back to watery D 4-8x day. So I called the office, and he had me go back up to 9 mg. The entire time I have been on 9 mg, it has done nothing since then (so about 7 months). Still at 4-8x day. Adding in mesalamine for one month made it worse, so that was a fail. About 2 weeks ago, I made the executive decision to cut it down to 6 mg. This is mainly due to the fact that 1) it has done nothing at a high dose for so long, 2) I have struggled with adrenal issues/fatigue in the past and it has recently gotten worse (I know "they" say budesonide isn't systemic, but I believe it does effect me - maybe I'm super sensitive or have compounding factors, who knows), and 3) I worry about impact on bone health/general health and generally am not a fan of taking medication when it's not giving a benefit.

Since reducing it to 6mg, BMs are not any worse. I feel more tired, and I am attributing this to my adrenals recovering (obviously this is very unscientific).

I see my GI at the end of July, and am thinking of holding at 6 mg until I see him, but basically, my question(s) is this:

1) Is there any point of staying at 6mg long term if it's not providing a benefit? When I wasn't on budesonide, I had about the same number of BMs so I'm thinking that it probably won't get worse. I know some people stay on it because they are concerned about it not working for them again if they go off of it and flare, but I am not in remission so that doesn't apply here.

2) Because Budesonide suppresses the inflammatory response, it masks symptoms but the body can't heal as effectively when this response is hindered?

3) Sort of a side note, but I have also noticed since reducing the dosage that my appetite has gone way down - as in, it appears to be normal now. I know 3mg is small, but has anyone else noticed if budesonide gave them the munchies? I know this is confounded with feeling like you can actually eat once you're not glued to the toilet all the time, but just curious...

And then on another note, I was also curious if people have other, notable symptoms when they are reacting to a food?

D is not the best signal for me since I have it all the time anyway. In the past, I have found that: 1) I will have increased fatigue/brain fog after eating certain foods (eggs, oatmeal), 2) will get deep, cystic acne on my face within a few days (soy), or 3) I get hives on my stomach/back/chest when exposed to heat (hot shower or sweating) - I have not figured out if food plays a big role in this or if it is predominately stress. I know its mast cells/histamine obviously, but it seems to wax and wane and I haven't been able to determine a definitive trigger. The hives go away within a half hour or so and they are small and spread out.

Thanks all :)

[tex]

So I have a dilemma.

I see my GI at the end of July, and am thinking of holding at 6 mg until I see him, but basically, my question(s) is this:

1) Is there any point of staying at 6mg long term if it's not providing a benefit? When I wasn't on budesonide, I had about the same number of BMs so I'm thinking that it probably won't get worse. I know some people stay on it because they are concerned about it not working for them again if they go off of it and flare, but I am not in remission so that doesn't apply here.

There is a good chance that you are not in remission because of untreated mast cell issues. Mast cell activation disorder can trump both diet changes and medications

2) Because Budesonide suppresses the inflammatory response, it masks symptoms but the body can't heal as effectively when this response is hindered?

Correct.

3) Sort of a side note, but I have also noticed since reducing the dosage that my appetite has gone way down - as in, it appears to be normal now. I know 3mg is small, but has anyone else noticed if budesonide gave them the munchies? I know this is confounded with feeling like you can actually eat once you're not glued to the toilet all the time, but just curious...

Increased appetite and/or weight gain are very common side effects of budesonide, but they do not affect everyone.

And then on another note, I was also curious if people have other, notable symptoms when they are reacting to a food?

D is not the best signal for me since I have it all the time anyway. In the past, I have found that: 1) I will have increased fatigue/brain fog after eating certain foods (eggs, oatmeal), 2) will get deep, cystic acne on my face within a few days (soy), or 3) I get hives on my stomach/back/chest when exposed to heat (hot shower or sweating) - I have not figured out if food plays a big role in this or if it is predominately stress. I know its mast cells/histamine obviously, but it seems to wax and wane and I haven't been able to determine a definitive trigger. The hives go away within a half hour or so and they are small and spread out.

All of those symptoms are associated with food reactions, and they are very common with MC. They are markers of reactions that will usually prevent healing of the intestines.

The hives are triggered by heat. However, they probably would not be triggered by heat (or anything else) if your mast cells were not overpopulated and overactive because of dietary and immune system issues.

Do you know your vitamin D level? If it is not more than adequate, budesonide will probably not work for you. IBDs (including MC) are caused by vitamin D deficiency, and IBDs deplete vitamin D levels, causing them to go lower unless sufficient vitamin D is supplemented. Corticosteroids also deplete vitamin D, because they suppress inflammation by exploiting the ability of the active form of vitamin D to suppress mast cell propagation and activation. Without adequate vitamin D, the immune system simply cannot work properly, and neither can corticosteroids. Without sufficient vitamin D, mast cells become overpopulated and overactive.

You won't find that in the medical literature because it is my own conclusion, based on research done while I was writing the book on vitamin D and autoimmune disease. The book describes how the details work, backed up by medical references.

The bottom line is, we have to keep our vitamin D level well up at lease in the middle of the so-called normal range. If mast cells are already a problem, then we have to restrict our diet to minimize the foods that contain large amounts of histamine, and foods that promote the degranulation of mast cells. If we get our histamine intake below our threshold for a reaction and keep it there, then our reactions will stop. In the meantime, until we get our diet fine tuned and our immune system stabilized, sometimes antihistamines will help to stop the reactions.

And you are quite correct that stress plays a huge role in this disease. Stress can trump everything else, and it can trigger a reaction even though we are doing everything else right. It can even do that if we have been in remission for years.

Tex

[seeljanerun]

Tex,

Thanks you as usual for your responses and help.

I have been on zyrtec now daily since I read your response, and have had zero hives since! Even after sweating profusely & hot showers, which were the reliable trigger.

Unfortunately, I don't think it's made much of an impact on my bowels, but perhaps it is helping in the slightest way and I am not observant enough to notice.

My vitamin D levels were last checked in 2014, and they were high-normal; I do take anywhere from 2,000-6,000 IUs on a rotating basis daily. But of course, 2014 was awhile ago, and this lab was before my chronic intake of Budesonide, so it is quite possible I am deficient. Now that it's summer time, I get some sunshine, so hopefully that helps too.

Someone recommended to me the specific carbohydrate diet, and, while I know it doesn't work for me by the book (I know for sure I can't tolerate eggs and any dairy really besides ghee..and I should probably even eliminate that..) it has brought me relief thus far just from eliminating sweet potato and replacing with banana and dates. The biochemistry makes sense, but I also don't like the idea of eating such high sugar foods. Still, going too low-carb (accidental ketosis) for me has been yet another stress on my body that I don't need right now.

& now, my father is in the hospital after just losing my mother 2 years ago - I am trying so hard to manage my stress and chronic worrying.

Life is always presenting us with challenges, but again, trying to think of this as a gift - once I figure this thing out, I will be an expert at taking care of myself ;)

[tex]

Hi Jane,

I'm sorry that you're having to deal with increased stress again. You're right, we seldom seem to have smooth sailing very long before something else comes up to add more stress back into our life.

It's good to hear that the antihistamine is at least helping to prevent hives. And I agree that the best source of vitamin D (at least in the summer) is exposure to sunlight.

Regarding fine tuning our diet, whatever works best (according to what our body tells us) is usually our best option, for treating MC.

We definitely get better at treating this disease as we go. Patience and perseverance pay off, and feeling better inspires us to continue to work to feel even better.

Thanks for the update, and I hope that you continue to improve.

Tex

[Gabes-Apg]

taking Vit D3 daily will help with the inflammation / histamine reactions

Also - taking magnesium will also help to reduce the histamine reactions. you can use a topical magnesium (cream/spray) and this can provide good elemental magnesium without risking D issues

The reactions to foods will be heightened on days there is increased stress, another motivator to stick to bland, low inflammation, eating plan. Avoid the main triggers like Gluten, Dairy, Soy, ?Eggs,

having to do the bland, not many ingredients eating plan can seem overwhelming. But to minimise symptoms and optimise wellness it is worth the effort.
Along with this is the mental and emotional side of living with MC. no medication, and no strict diet can resolve the mental and emotional side of living with MC.

hope this helps