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Still up that creek...

 
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sunny
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Joined: 17 Jan 2008

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2017 Dec 17 - 7:44 AM



Location: Washington

PostPosted: Tue Sep 05, 2017 3:29 pm    Post subject: Still up that creek... Reply with quote

Even though my trip to ER facilitated getting in earlier to see my new PC doc and my new Cardiologist's Nurse Practitioner ( we are new in this community) not one of them , including ER doc, would tackle the timing of the Budesonide taper...they all deferred to a possible future visit with a Gastroenterologist ...which is still a month away....

They all agreed I am having a very unusual and problematic reaction to Budesonide (difficulty breathing when walking more than 400 steps or laying down plus severe ankle and feet edema, and large purple/brown bruises on arms and legs) ...

Even though blood tests showed my kidney function has lowered (EGFR has dropped from 57 to 39 in 10 days due to aggressive diuretic use to reduce edema).... and even though my heart's Ejection Frction has dropped from 40 to 30.....I'm on my own as far as guidance on tapering.......
so I've been reading in the files for advice from other members who have tapered...I know I need to be careful so I don't trigger a huge relapse .

So I'm now taking 3mg capsule daily .. starting Sept 1.
If I do 2weeks at 3mg,
then 3mg every other day for one week,
then 3mg every 3days for a week,
then 3mg every 4days for the last week of September...
Is that too fast a taper? I've been on Budesonide 4 months and finally found relief from unrelenting cramping and multiple bouts of Big D....I hate to have to stop! And I'm apprehensive at what will happen and if any healing has taken place after being sick for so long.
Any suggestions? I actually don't have much hope for help from the GI doc I'm seeing, but need to follow through primary care doc's referral....
Sunny
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tex
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Joined: 24 May 2005

Posts: 30859
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2017 Dec 17 - 9:44 AM


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: Tue Sep 05, 2017 5:10 pm    Post subject: Reply with quote

That should work. I think I would do only 1 week at 3 mg per day in order to get off the stuff. If you were only on it for 4 months, your adrenals are probably not going to be dependent on it anyway, so you only need to taper the dose to prevent the rebound effect.

At least that's my strictly unprofessional opinion.

Tex
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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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sunny
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Joined: 17 Jan 2008

Posts: 694
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2017 Dec 17 - 7:44 AM



Location: Washington

PostPosted: Tue Sep 05, 2017 9:53 pm    Post subject: Reply with quote

Tex, thanx for your "strictly unprofessional opinion!" At least it's an opinion....Which I did not get from my health professionals...

So only 1 week of 3mg...then just stop or do the every other day etc...for rest of the month?
Sunny
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Upton Sinclair
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30859
User's local time:
2017 Dec 17 - 9:44 AM


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: Wed Sep 06, 2017 8:21 am    Post subject: Reply with quote

if your symptoms aren't too bad, I would at least do a week of every other day to help avoid the rebound effect, but if the D is already back by then, you might as well stop, IMO.

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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sunny
Rockhopper Penguin
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Joined: 17 Jan 2008

Posts: 694
User's local time:
2017 Dec 17 - 7:44 AM



Location: Washington

PostPosted: Wed Sep 06, 2017 4:30 pm    Post subject: Reply with quote

Thanks so much, Tex! So I guess I'll take each day as it comes and if symptoms return I agree I may as well stop...
Appreciate the suggestions....
Sunny
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"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
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DebE13
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Joined: 27 Nov 2011

Posts: 1616
User's local time:
2017 Dec 17 - 9:44 AM


Food Intolerances : Gluten, casein, soy, eggs
Location: Wisconsin

PostPosted: Tue Sep 19, 2017 6:44 pm    Post subject: Reply with quote

Good luck with the taper Sunny!
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Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
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2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
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