40 weeks off budesonide

[mrs h]

well hello from the UK
i am 1 year since diagnosis, and 40 weeks off the budesonide, and im doing ok,
no flares, although came close with some new heart meds, i am now sadly not on any medication, and know thats a huge risk,
i can eat veggies well cooked, which makes me happy,
i can even eat a tiny touch of chocolate to keep me happy, just 1 piece , thats all i need
im still gluten free as much as possible, and can tell if its sneaked in by the vile headache i get next day,
im still making all foods from scratch, keeping it simple, and can add in fresh herbs now,
i can drink 2 cups of coffee in a morning, with a tiny bit of milk, then water after that
from using the mag lotion and vit d liquid, my vit d is still at a reading of 90 which is excellent, so i only use it once a week now,
im still low on b12 and folate, so need to find a good alternative, to add to my routine , in a liquid form, not tablets
my kidneys have not altered since the last time, i am still at stage 3 of CKD
i remember last time reading about b6 = p5p ? any advice on that?
we have bourght a greenhouse, and plan to grow our own again over this year, coronavirus is in full swing here, so safer to stay at home even when we are not in a lockdown, like now,
my only real issue right now is still the fluid retention, i was doing really well, tried new heart med and 4 kg went on within days, and i cant shift it, 16 months iv been battling this fluid,
i also have an extremly dry mouth all the time, and weird internal temperature fluctuations, where i feel hot, i sweat, but my temp doesnt go up when i take it,
i hope everyone is well, and i send big hugs, oooo id love a hug off my kids....cant wait for that day, stay safe everyone, and be kind xx

[tex]

Hello Mrs H,

Thank you for the update. It's very gratifying to see how well you listen to your body so that you can keep the disease under cotrol.

If I'm understanding you correctly, you need to be taking a diuretic, but when you do, it causes digestive system issues. If that's the case, have you considered any of the natural diuretics. I don't know much about them, but some of them are apparently as effective as prescription diuretics. That doesn't mean that they would be safe and effective for you, however. I wonder if your doctor might be open to this option, or if she or he might be able to advise you about which ones are the safest and/or might be the most effective for you. The website at the following link lists some natural diuretics. For all I know, some (or all) of them might cause the same problems as the prescription medications.

https://www.medicalnewstoday.com/articl ... xedContent

Regarding the B6/p5p, some of us take this product:

https://www.thorne.com/products/dp/methyl-guard-reg

And some of us (including me) take this product, which is about twice as potent:

https://www.thorne.com/products/dp/meth ... d-plus-reg

Both those products contain the active forms of "B" vitamins so that our bodies are better able to absorb them.

I hope that some of this is helpful. Thank you for the update, and I wish you continued success, and the best of health.

Hugs,

Tex

[mrs h]

thankyou for the hugs, i need them

taking prescription diuretics from my dr and heart pills are what got me in this mess with CC , i was given them to lower blood pressure, but the opposite happened and i ended up with 11kg of fluid retention, CC and kidney disease and higher bp , work that one out,

thankyou for the links, i shall look into the naturel supplements, and see if i can find the thorne capsules available in the uk, and carry on following the advice on here that works for me,

i still have not been able to see a specialist regarding the CC , but a lovely nurse phoned me, said diet isnt really to do with MC, and once youve done 12 weeks of budesonide, thats it your cured usually, no swollen belly, no iffy days and can go back to life as before. and i probably now have IBS that causes the swelling ect

so, im doing my own thing , sticking to my happy diet as i call it, the foods my belly likes, and tolerates, i can do tiny salads ok, but i miss fruit and huge bowls of salad, so far i cant find any fruit that my belly is happy with. and i was doing good until i tried the new heart pills, now im back to looking pregnant, but no D , so back to work once again, back to my safe foods for now,

thanks once again for taking the time to reply, stay safe, and big hugs right back at you. xx