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Tapering Budensonide & Took Two Steps Back

 
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Pam V
Adélie Penguin
Adélie Penguin


Joined: 11 Jun 2017
Posts: 95
User's local time:
2017 Dec 17 - 6:32 PM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Thu Dec 07, 2017 7:46 am    Post subject: Tapering Budensonide & Took Two Steps Back Reply with quote

Good Morning, All -

I have been doing a slow taper off of Budesonide, which has been going pretty well. Typically when I have cut back on the dosage, things are a little, ummm, softer for a few days but then return to Norman once a day and sometimes once every other day. I recently cut back from 3 mg once every three days to 3 mg once every four days. Concurrently, I have been dealing with either a sinus infection or allergies and have pulled out the Neti pot to help alleviate the congestion. There have been a few times over the past few days when I have had a post nasal drip which has been gross. So.....I'm not sure if my symptoms are related to cutting back on Budesonide, sinus issues, or something else. Yesterday, things were definitely softer than usual, which I thought might have been related to the potato chips that I had eaten the day before (Jackson's Honest Chips - sea salt, coconut oil, and potato). Yesterday, I ate rice and protein for all three meals. This morning, I was back to having floaters that were starting to resemble the puffy poops that I haven't seen since last May,

I have been taking Kirkman's magnesium (three times/day), MethylGuard Plus (once/day), 1,000 IU of Vit D (three times/day), Zyrtec, and Fish Oil. This morning, I cut out the Fish Oil and oral Mag - used Mo Maggie lotion before work and will use again tonight. I switched the Zyrtec to one 24 hour Allegra. I am 5'3" and weigh 118 lb.

Any suggestions on how to proceed? I don't know if I should have kept Budesonide once every 3 days until after the holidays. I'm cooking for Christmas Eve and Christmas Day so I should be able to ensure that I don't get cross contamination with something I shouldn't have.

Thank-you all so much. I'm looking forward to getting back on track.

With great appreciation and love to you all -

Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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jlbattin
Rockhopper Penguin
Rockhopper Penguin


Joined: 30 Jun 2015

Posts: 603
User's local time:
2017 Dec 17 - 5:32 PM


Food Intolerances : gluten, soy, dairy, egg, green beans, olive oil, raw nuts, and probably more but I'm still discovering
Location: Colorado

PostPosted: Thu Dec 07, 2017 9:33 am    Post subject: Reply with quote

Pam,

How long have you been on the Budesonide/Entecort? I was on it for almost a full year before I totally stopped it. I weaned myself off very slowly (like 1 every 3-4 days and then 5) until I finally just stopped.

Also, remember that stress is never our friend and the least little bit can wreak havoc on our systems. I find that I run a little higher stress during this time of year than any other.

Be patient with yourself.
_________________
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Soy free, Dairy free, and Egg free since July 3rd, 2015
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Pam V
Adélie Penguin
Adélie Penguin


Joined: 11 Jun 2017
Posts: 95
User's local time:
2017 Dec 17 - 6:32 PM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Thu Dec 07, 2017 10:05 am    Post subject: Reply with quote

Hi Jari,

I started the Budesonide in late May - went from 9 mg to 6 mg in July, dropped to 3 mg in September and have dropped slowly to every other, every third and now every fourth day.

I appreciate your thoughts - this is a stressful time of year. I'm haven't ventured too far from Stage 1 eating but will definitely stick to the things that I know agree with me.

Thank-you so much -

Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30861
User's local time:
2017 Dec 17 - 5:32 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Dec 07, 2017 11:03 am    Post subject: Reply with quote

I agree with Jari, the holidays are not a good time to be stopping a budesonide treatment. Adding a daily antihistamine (if you aren't already taking one) sometimes helps when discontinuing a budesonide treatment. If it's going to help, you will notice the improvement within a day or so.

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.
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Pam V
Adélie Penguin
Adélie Penguin


Joined: 11 Jun 2017
Posts: 95
User's local time:
2017 Dec 17 - 6:32 PM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Thu Dec 07, 2017 11:31 am    Post subject: Reply with quote

Thank-you, Tex. It sounds as if folks do well with Allegra so I will use one 24 hour Allegra each day. I'll plan on sticking to one 3 mg Budesonide every four days but if things don't improve, I'll go back to one every three days until after the holidays.

I'm so appreciative of the advice I get from this board. Thank-you so much for all that you do to help us.

With all my best wishes -
Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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Gabes-Apg
Emperor Penguin
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Joined: 21 Dec 2009

Posts: 7276
User's local time:
2017 Dec 18 - 9:32 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Thu Dec 07, 2017 11:37 am    Post subject: Reply with quote

3000 iu of Vit D3 is a low dose in the early stages of healing - have you had your Vit D3 levels checked??
most of us in the first stages of healing take 5000iu.

i agree with comments above that doing a taper during stressful time is not the ideal.

the sinus issue, post nasal drip etc are all indicators of excess inflammation most probably linked to histamine so taking the antihistamine will help gut and rest of the body.

hope this helps
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Pam V
Adélie Penguin
Adélie Penguin


Joined: 11 Jun 2017
Posts: 95
User's local time:
2017 Dec 17 - 6:32 PM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Thu Dec 07, 2017 12:17 pm    Post subject: Reply with quote

Thank-you, Gabes! I had my Vit D checked in July 2016 and it was 36 mg/mL I am scheduled to get my physical in February and will definitely have it checked again then. Do you know if I should be cutting back or not taking supplements before having my routine bloodwork for a physical? I've been seeing posts about not taking (B vitamins?) before having bloodwork done.

Thank-you so much - I hope that you are enjoying a lovely Australian spring!!

Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7276
User's local time:
2017 Dec 18 - 9:32 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Thu Dec 07, 2017 1:04 pm    Post subject: Reply with quote

stop the supplements 3 days before blood work

if you have stopped the oral mag, make sure you use enough topical mag that you are getting at least 350mg elemental magnesium per day. Magnesium is key in managing histamine issues.


our aussie spring has turned into hot summer. Anytime I am not working, I am spending as much time as I can outdoors.
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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brandy
Rockhopper Penguin
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unknown IP

Joined: 16 Oct 2011

Posts: 2014
User's local time:
2017 Dec 17 - 5:32 PM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Fri Dec 08, 2017 3:21 pm    Post subject: Reply with quote

Hi Pam,

4.5 month Entocort user here.

Yes, kick back up to once every 3 days. Stay with that until after the holidays. Stay at that level until your body tells you to go to once every 4 days.

Supplements can be problematic for us at the low dose of Entocort. Consider delete the fish oil indefinitely and eat some fish every week if you tolerate fish. In order to drop down to once every 4 days or get off of budesonide when you decide to continue with antihistamine before last budesonide pill consider discontinue all oral supplements for a couple of weeks after last budesonide pill but keep up with the antihistamine and transdermal magnesium. If you are doing ok 3-4 weeks after the last budesonide then you can slowly resume vitamin D3 oral and B vitamins oral.

Also stick to very very safe diet when you are on Entocort every 4 days and when you decide to get off of Entocort. This is not the time for experimentation. Stick to very safe diet for say 30-45 days after last Entocort.

Also....delay getting off of Entocort if you have any stressful things scheduled in your life...job change....move etc.
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brandy
Rockhopper Penguin
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unknown IP

Joined: 16 Oct 2011

Posts: 2014
User's local time:
2017 Dec 17 - 5:32 PM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Fri Dec 08, 2017 3:34 pm    Post subject: Reply with quote

Pam,

Tex posted a good study on a recent thread titled "How Long Can you Stay on Entocort."

I wanted to emphasize that on the forum we find that those who do a very long slow taper when getting off of entocort, are gluten free and taking antihistamine at time of last budesonide have good shots of not relapsing. The folks referenced in the study were not gluten free so they have a high incidence of relapse. IF you have to stay on one pill after 3 days for 4-5 months don't sweat it. See Jari's post above. Listen to your body for timetable.
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Pam V
Adélie Penguin
Adélie Penguin


Joined: 11 Jun 2017
Posts: 95
User's local time:
2017 Dec 17 - 6:32 PM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Fri Dec 08, 2017 8:12 pm    Post subject: Reply with quote

Brandy ~ thank you so much for your input. I’m going to go back to 1 Budesonide every 3 Days and will definitely follow your advice when I trim it back further. Up until now, when I lowered my dosage, things might not be as good for a day or two but then got right back on track. I was surprised at my reaction this time and realize that I can’t stick with a fixed timeframe in my mind of when I should be managing by diet alone.

I am grateful for your advice ~ thank you so much ~ I’ve learned a lot from you.

Thank you ~ Pam
_________________
Rivers know this: there is no hurry. We shall get there some day.”
― A.A. Milne, Winnie-the-Pooh
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