what next please?

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mrs h
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what next please?

Post by mrs h »

hi, so iv just begun week 5 on budenoside, and i am constipated, i am only on 6mg of budz as the 9mg gave me horrendous side effects.
for 4 weeks i have been using magnesium lotion, and vit d3 spray, and yesterday i have now added in dr mercola kids methylated vitamins, chewable ones, i am taking only 1 of the recommended 2 daily tablets to see if im ok with them.
do i drop the budz now to only one 3mg tablet? or do i see if im constipated for a few more days?
im eating the same food daily, GF , im eating happy eggs which are free range here in the uk, and still drinking water like im a fish, and i can now do a daily walk of around 4/5 miles,
no urgency since week 3, although i do still have some bubbly wind first thing when i wake up, and start moving
so, after all that waffle, do i drop to 3mg or stick at 6mg for a bit longer, it all seems very quick?

thankyou xx
never regret the things you did,
brandy
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Post by brandy »

If it is severe constipation I'd step down right away. If average constipation maybe give it 3 days then step down to 3 mg.

Welcome to the forum Mrs. H.

It sounds like you are doing well.
mrs h
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Post by mrs h »

thankyou Brandy for your reply,

i started on a restricted diet beginning of dec 2019 a month before i got my diagnosis, so i had a head start, i literally couldnt eat anything, so i lived on mash potato and fresh chicken from the butcher.
about 8 days ago i tried white fish but it gave me WD again for the day, so im literally still eating chicken daily, i have added a free range egg, and a handful of gluten free pasta, plus one unripe banana, and well cooked fresh carrots, thats what im living on, but doing ok, i think,

i shall take your advice, and im going to up my veg intake a little tonight, as my gut instinct says this is all very quick, and down to 3mg after almost 5 weeks is too soon, but then again i am very sensative to meds, but ill reavaluate each day,

have a wonderful day x
never regret the things you did,
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tex
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Post by tex »

Hi,

I second Brandy's suggestion. One of the labeled side effects of budesonide is constipation, and some of us are more sensitive to budesonide than others. Constipation can be just as hard on someone (in some cases harder than) as diarrhea. If you've been on the diet for six weeks or more your intestines may be beginning to heal.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
dhouts
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Post by dhouts »

Conversely, if WD returns, increase the dosage. I've had to play with budesonide until I found the right dosage. There have been times when I only took 3mg several times a week. I've now have a budesonide & Imodium combo, along with proper diet, that keeps me very regular and pain free.
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Post by Harmony33 »

You might also consider alternating 6 mg and 3 mg before tapering down to 3 mg per day.
Some days there won't be a song in your heart. Sing anyway. —Emory Austin
mrs h
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Post by mrs h »

thankyou for your replies and support,
i think i shall maybe alternate between 3 & 6 mg, and just listen to my guts and go on a daily basis, i am extremly sensitive to meds, and i couldnt hack ENTOCORT, it was awful stuff, but i can take budenofalk without any side effects at 6mg,
my small family dr has agreed to go at whatever pace i chose, and as there are no specialist appointments for months i am literally on my own, so i really do value everyones help on here,
i took your advice about magnesium, and got better you, magnesium sleep lotion, i am nearly 50, and this last week i have slept for 6 hours solid, i have never done that before, im hoping its the magnesium and not the budz reducing the inflammation in my body( i broke my neck years ago, the muscles are always sore)

have a wonderful day where ever you are, today you made a difference to my life, i thankyou for that.
never regret the things you did,
brandy
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Post by brandy »

mrs. H

The 6 - 3 every other day is a good way to go. You should have good success.

Do you have a copy of Tex's book? The link is in the upper right corner. It is worth the money and I think the only book
on MC.

Also, if you click on the Foundation website, link above, it is worth reading every newsletter on the Foundation website.

Welcome again.
mrs h
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Post by mrs h »

good morning from the UK

thankyou, yes, iv looked at the book, i dont use amazon, so will get my son to sort it out when he is back from america,

today i have gone to 1 x 3mg tablet, i plan on alternating if possible between 3 and 6mg, for a good few weeks, or longer, i will see how i go, then my plan is when i do get to 3mg daily is to be on it for a few months at least, and for now i am dropping my soft carrots, until i see what 3mg produces,

my diet is very very simple, potato, 1x chicken egg a day, a handful of gluten free pasta, chicken or turkey, and an unripe banana, plenty of water. and a little bit of cheddar cheese, i have been on this for 8 weeks roughly

tomorrow is the start of week 6 for me on the budenoside,

i live in hope.

xxxx
never regret the things you did,
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tex
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Post by tex »

Almost 2/3 of us produce antibodies to chicken eggs, so we have to avoid them, at least until we heal well. Duck eggs might be an option for you. Most of us react to casein. Cheese is loaded with casein. We have to avoid all dairy products.

Incidentally, you can buy the book from most any bookseller, anywhere in the world. Your local library might have it. If they don't, they should be able to get it from their supplier.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
brandy
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Post by brandy »

so im literally still eating chicken daily, i have added a free range egg, and a handful of gluten free pasta, plus one unripe banana, and well cooked fresh carrots, thats what im living on, but doing ok, i think,
This is a very safe diet for us. Some of us won't be able to manage the egg.

Eat this for breakfast, snack, lunch, snack, dinner

Mrs. H you are doing a great job!
mrs h
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Post by mrs h »

good morning :grin:

i have done a reply somewhere but lost my internet connection, so here goes again

the cheese was a one off, and only a nibble, whilst i made my husband his food for work, it was rather nice , hmmmm duck eggs, i shall have to scout about, im not aware of any locally

the books? im on it....thanks, i much prefer a book in my hands to read,

ok, i tried 3mg of budz, and after a few hours got a low grade headache, the belly gurgles began, and that evening i could feel the bottom of my belly starting to ache a little, when i woke the next morning i could feel a little wind struggling around my colon again, and i needed the toilet twice withing 30 mins of getting up, both softer than normal, but unusual as i have been only once a day for a month, so for now i have gone back to 6mg a day, until i get your feedback if this is a normal reaction to reduction? and could you show me any other threads about normal reactions to tapering down please, besides the 22 page thread, as i cant find any, and what to expect,
6mg im getting constipated, and a bruised bum, but feel good, and can have a life, 3mg for one day only gave me cramps, and 2 bm's which were softer, which do i chose?

at the beginning of all this when i reacted to the medication, i filled up with fluid, to an extra 10kg almost of weight, from dec 2019 i weighed in at 74kg, now feb 2020 i am down to 66kg, but an stuck and cant lose the rest of the fluid, i can see it, and feel it when i walk, i just cant move it, im sure its from the massive reaction to the meds, my dr just says she has no idea what caused me to blow up like that, as my kidney function is ok. have you heard of any reactions like this before, i can find nothing on the internet, but i honestly thourght i was dying as i had the swelling, the waterey D, joint pain ect, and my dr ignored me on the multiple visits i made,


once again, thankyou for your time,

enjoy your day, xx
never regret the things you did,
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