One Week Since Last Budensonide - So Far, So Good

[Pam V]

I have been taking Budensonide since late May - 9 mg a day through June, 6 mg a day through August, 3 mg a day through October, then a slow taper of one every other day, one every third day, and one every fourth day. I had tried to discontinue in late November as things had been going well and I had been experiencing the telltale constipation that I have when I know it's time to cut back. The stress of the holidays and possible cross contamination were good reason to not try to discontinue until after the holidays.

I'm almost afraid to say it - but so far, things have been pretty good! My diet is still very, very limited. I've been buying Fresh Fields turkey and Roast Beef at the prepared foods section at Whole Foods (only contains the meat, salt and pepper). I buy a pound of each every week and freeze small portions Most mornings, I have turkey or roast beef for breakfast (sometimes with rice). About once a week I may have gluten free cereal and almond milk. Lunch and dinner are still mostly protein (meat, poultry, or fish) - usually with dinner I'll have rice or red potato and a well cooked vegetable. A few times a week I have rice cakes and almond butter.

One thing I have noticed, that I am almost afraid to say, is that the numbness that I have been experiencing in my hands and the tingling I felt on my head seems to have subsided. Could that have been a side effect of Budensonide? I still take Methyguard Plus once/day and Magnesium/Vit D - three times/day and increased my antihistamine (Zyrtec) to 1 1/2 pills in the AM and 1 with lunch.

I bought a box of Daiya Mac and Cheese. I'm thinking that if all goes well, maybe I could have it in a few months... Also, have read many posts of people who have allergies who enjoy gluten free bread like Canyon Ranch - and don't have issues with baked egg. I suspect that I could never eat these things on a regular basis but I am really hopeful that perhaps a safe Mac and Cheese once in a great while (?) or a piece of gluten free toast with almond butter (very occasionally) might be in my future.

I hate to think of where I would be without this board - I can't thank-you all enough!!!

With gratitude - Pam

[tex]

Hi Pam,

Thanks for the update. Yes, budesonide can cause neurological symptoms for some of us, so maybe that was the cause.

Tex

[Maximus74]

Great to hear your recovery is going well Pam!

[starfire]

Happy for you.
Shirley

[Marcia K]

Hi, Pam. Thanks for sharing the good report! I hope your recovery continues.

[Pam V]

Thank you for your good wishes. I know it’s too early to be getting too excited so I am cautiously optimistic. I am grateful for your support and guidance ~

Pam

[jlbattin]

Hi Pam,

Don't give up! Stay on the right path, and down the road I have faith that you'll be able to enjoy the gluten free bread and many of the other things that you can't have now. I was almost a year and a half or even longer before I tried adding in new things, and now, I eat that Canyon Bakery gluten free bread every single day with no issues at all! But like you, I believed I would never be able to have any of the things that I once enjoyed. I can now enjoy a good salad once in awhile, and just over the weekend, I made a strawberry cheesecake with the Daiya cream cheese and the So Delicious Coconut whipped topping and I made my own crust with pecan meal and coconut oil. I thought I had died and gone to heaven! I also made a coconut cream pie with the same crust and coconut milk and the whipped topping. Can I eat that all the time? No, but it was a wonderful treat and I know I can have it once in awhile and I don't feel cheated!

Hang in there! There is light at the end of the tunnel. Give your body time to heal!

[Pam V]

Oh, Jari ~ I am getting ready to turn in for the night. Thank you for your post ~ I will dream of strawberry cheesecake:)

Thank you so much!!!

Pam

[Gabes-Apg]

great update!!

an it is ok to be optimistic so long as you are patient and dont rush things food wise!!

happy healing
xo