After exhausting all other attempts for healing....ruling out Pancreatic cancer, SIBO, various sensitivity issues like Salicylates, Bile Acid Malfunction, etc I started on Budesonide in mid March. Within a week or two, I was enjoying visits from Norman and beginning to eat again and able to gain weight and begin to thrive. It's been wonderful! Of course the doc wanted me to taper, but each attempt brought back symptoms. On a full dosage I've been able to eat veggies, salad, even raspberries...it's been great.
Then I noticed the weight gain was getting out of control, I broke out in angry red sores on my nose, developed hair loss, and began feeling short of breath. But my ankles! They look like giraffe knees! Lasix doesn't remove the edema, elevating my legs in bed doesn't either. And now my feet are also so swollen I can barely get my shoes on.
Even though I have advanced heart failure, I have never had this kind of edema, and the occasional times they swelled 40 mg of Lasix stopped it.
We moved to Eastern Washington inMay and I can't see my PC doc till Sept 1 and the cardiologist till Sept 21.
I'm thinking that I need to taper and stop Budesonide which terrifies me cuz I think my symptoms will come roaring back. I do have tincture of Opium I can take as backup but it just slows motility....does nothing for inflammation.
How quickly can I taper? I'm worried about going too fast....but the ankle & feet swelling is getting worse.....
Appreciate hearing any ideas....
Sunny
Up a creek; Need a paddle!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Up a creek; Need a paddle!
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Sunny,
I believe that is an allergic reaction to the drug. IMO you need to terminate the drug but you may have been taking it too long at full dose to quit cold turkey. I would call my doctor's office immediately to advise them of my symptoms and get his or her thoughts on how to handle the situation, or else go to the ER. If you decide to taper, I would probably drop the dose by one capsule immediately, and drop it by another capsule in 2 or 3 days.
Who prescribed the budesoniode? It it was your GI doc, I would call his or her office rather than wait to see my PCP. I would call one or both of them immediately. You may need to have cortisol injections if you stop cold turkey, but that's one option.
Tex
I believe that is an allergic reaction to the drug. IMO you need to terminate the drug but you may have been taking it too long at full dose to quit cold turkey. I would call my doctor's office immediately to advise them of my symptoms and get his or her thoughts on how to handle the situation, or else go to the ER. If you decide to taper, I would probably drop the dose by one capsule immediately, and drop it by another capsule in 2 or 3 days.
Who prescribed the budesoniode? It it was your GI doc, I would call his or her office rather than wait to see my PCP. I would call one or both of them immediately. You may need to have cortisol injections if you stop cold turkey, but that's one option.
Tex
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.
Tex,
My primary care prescribed the Budesonide ....I called her & heard back that she's concerned about heart failure and kidney failure and to go to ER...so my daughter is on her way .
I called the cardiologist here in Richland that I have an appointment with Sept 21st to see if they would see me early but haven't heard back from the PA.
Thanks for the heads up...I guess I was thinking it will go away and didn't want to make a fuss....
Sunny
My primary care prescribed the Budesonide ....I called her & heard back that she's concerned about heart failure and kidney failure and to go to ER...so my daughter is on her way .
I called the cardiologist here in Richland that I have an appointment with Sept 21st to see if they would see me early but haven't heard back from the PA.
Thanks for the heads up...I guess I was thinking it will go away and didn't want to make a fuss....
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
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Gabes-Apg
- Emperor Penguin
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Sunny
agree with Tex about seeing doctor and getting professional guideance.
on a side note - as part of my illness and getting well journey, I spent a couple of years with excess odema (ie could not wear shoes, had to buy shoes 2 sizes bigger etc ) at its worst I had tachycardia, and medium level kidney dysfunction etc etc
fixing nutritional deficiencies and minimising toxins/inflammation resolved this for me. Key nutrients were things like potassium and B3. I am now able to wear rings on my fingers for the first time in 5 years, and now have an actual ankle (ie leg slims down to an ankle before going to my foot!!) and no longer have to take medications for heart/kidney etc
Noting that my long term eating plan is low inflammation eating plan (ie no Gluten, no dairy etc, no salad, minimal amounts of low fibre fruit) and low inflammation lifestyle (avoiding various biotoxins etc)
agree with Tex about seeing doctor and getting professional guideance.
on a side note - as part of my illness and getting well journey, I spent a couple of years with excess odema (ie could not wear shoes, had to buy shoes 2 sizes bigger etc ) at its worst I had tachycardia, and medium level kidney dysfunction etc etc
fixing nutritional deficiencies and minimising toxins/inflammation resolved this for me. Key nutrients were things like potassium and B3. I am now able to wear rings on my fingers for the first time in 5 years, and now have an actual ankle (ie leg slims down to an ankle before going to my foot!!) and no longer have to take medications for heart/kidney etc
Noting that my long term eating plan is low inflammation eating plan (ie no Gluten, no dairy etc, no salad, minimal amounts of low fibre fruit) and low inflammation lifestyle (avoiding various biotoxins etc)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
HI Sunny!
Just wanted to let you know that I am in Waitsburg....just 45 minutes East of Richland
Glad to know you are a close forum member!
Hope you got the proper treatment yesterday!
Just wanted to let you know that I am in Waitsburg....just 45 minutes East of Richland
Glad to know you are a close forum member!Hope you got the proper treatment yesterday!
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Update
Long time in ER yesterday until almost midnight...lots of tests, lung X-ray, and doc said he thought my kidney labs would be much worse than slightly elevated....suggested an older diuretic...Metolazone instead of he Lasix. He thought it would help both heart & kidneys...my potassium level was high at 5.2 so I guess I can slow down on the potassium I add to magnesium drink! He hesitated to have me taper Budesonide without a doctor's help 
So today I managed to get appt for tomorrow with cardiologist's NP. ( appt was SEPT 21st)
And PC for Monday instead of Sept 1st. So glad I went into ER but I kept thinking I shouldn't have bothered and was probably wasting everyone's time...where do these crazy thoughts come from? But the ER doc say so was the magic key to get seen my the docs I needed...plus I'm relieved I wasn't in serious heart and kidney trouble!
They kept telling me the weight gain was water but I kept telling them my clothes are tighter so I know it's fat and water....
Thanx for the kind thoughts and support....
Sunny
So today I managed to get appt for tomorrow with cardiologist's NP. ( appt was SEPT 21st)
And PC for Monday instead of Sept 1st. So glad I went into ER but I kept thinking I shouldn't have bothered and was probably wasting everyone's time...where do these crazy thoughts come from? But the ER doc say so was the magic key to get seen my the docs I needed...plus I'm relieved I wasn't in serious heart and kidney trouble!
They kept telling me the weight gain was water but I kept telling them my clothes are tighter so I know it's fat and water....
Thanx for the kind thoughts and support....
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Babes, forgot to say thanx for the tip about B3... I probably am very low in all the B's.....I keep thinking I'll get some B-50 or something but as I don't know what or which I do nothing ...after so long being Mal-nourished it would make sense to investigate that...I did have a test for B-12 which was " normal".... is there a B supplement you recommend?
Plus I hadn't thought the edema would be related to anything BUT he Budesonide....food for thought for sure....
Sunny
Plus I hadn't thought the edema would be related to anything BUT he Budesonide....food for thought for sure....
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Babes...just saw this?....YIKES! It will be interesting to see if this new diuretic helps ...the Lasix seemed to have little impact on the fluid...
I hate taking diuretics cuz of electrolytes and getting cramps, but do step up the mag & potassium and that helps...
I hate taking diuretics cuz of electrolytes and getting cramps, but do step up the mag & potassium and that helps...
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I had odema - but never took budesonide
your B12 result may have been 'normal' but this test includes active and inactive form of B12. and the result can be up to 80% inactive B12, so it might be at a normal level, but it may not be 'usable' B12
A good product is the Thorne, Methyl Guard product it has active B2, B6, B9 and B12
and then for B3 now foods or country life B3
( I get highly absorbable B3 drops from my practitioner here in Aus so can not recommend that product)
DO NOT supplement with Potassium without first discussing with doctor or functional practitioner
your B12 result may have been 'normal' but this test includes active and inactive form of B12. and the result can be up to 80% inactive B12, so it might be at a normal level, but it may not be 'usable' B12
A good product is the Thorne, Methyl Guard product it has active B2, B6, B9 and B12
and then for B3 now foods or country life B3
( I get highly absorbable B3 drops from my practitioner here in Aus so can not recommend that product)
DO NOT supplement with Potassium without first discussing with doctor or functional practitioner
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes.....thanx for this..as always, helpful information.....I'll get these ordered this weekend....
I use mostly food for potassium... bananas, potatoes, etc...& occasionally a pinch of potassium powder with liquid mag if out of those...if I don't my potassium levels are always low...
I use mostly food for potassium... bananas, potatoes, etc...& occasionally a pinch of potassium powder with liquid mag if out of those...if I don't my potassium levels are always low...
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Update
Nurse Practitioner today said she thought the swollen ankles & shortness of breath while a reaction to Budesonide is a cardiac parablem. And asked if I knew that Budesonide is contra-indicated for heart failure patients and can CAUSE heart failure. Gulp....she wants me to combine the new diuretic with lasix for 3 days and if the swelling doesn't do down to call her...
She thinks the purplish red bruises on my arms are also from the Budesonide...she's very concerned at the severity of my shortness of breath...so I am to spend the weekend with my feet up, & with minimal standing in place to facilitate fluid removal.
Actually that's great! I just got my copy of Micheal Connelly's new book, THE LATE SHOW, from the library! Rx for laziness....perfect!
So far, 2 Budesonide is not leading to tummy troubles....fingers crossed...
Sunny
She thinks the purplish red bruises on my arms are also from the Budesonide...she's very concerned at the severity of my shortness of breath...so I am to spend the weekend with my feet up, & with minimal standing in place to facilitate fluid removal.
Actually that's great! I just got my copy of Micheal Connelly's new book, THE LATE SHOW, from the library! Rx for laziness....perfect!
So far, 2 Budesonide is not leading to tummy troubles....fingers crossed...
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair