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Today I started Budesonide
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janden143

unknown IP

Joined: 27 Jul 2016

Posts: 24
User's local time:
2017 Nov 19 - 9:17 PM


Food Intolerances : Tramadol, scallops. Don't know about the others yet.

PostPosted: Sat Nov 19, 2016 2:21 pm    Post subject: Reply with quote

Thank you for your advice Gabes and Tex. the last thing I want is to be where I was this time last year - afraid to go out. I am enjoying life again. Giving up Gluten and lactose is a small price to pay. I have also given up the probable causes of my CC, ibuprofen, Omeprazole and simvastatin but as my CC was a long time coming (I had symptoms for 4 or 5 years before it became completely uncontrollable and eventually diagnosed) I don't think my sensitivities are restricted to those drugs.
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Adelaide
Adélie Penguin
Adélie Penguin


Joined: 14 Dec 2015

Posts: 169
User's local time:
2017 Nov 20 - 6:47 AM


Food Intolerances : Gluten
Location: South Australia

PostPosted: Thu Dec 01, 2016 4:42 pm    Post subject: Reply with quote

Hi Janden

I started this post back in February when I started Budesonide. The Budesonide was a little slow in being effective for me. I really noticed the difference a couple of months later when I gave up gluten and dairy 100%.

I stopped taking the Budesonide on 19th September and it was on that day I saw my GI doctor. He also talked to me about going on methotrexate because the steroids affect the bones. He did previously talk to me about prednisilone but then said Budesonide was much better for MC. It is funny because I have been talking to a friend who was put on methotrexate for her autoimmune disease and the medication has caused major digestive issues for her.

Anyway as I said I stopped the Budesonide on 19th September and my symptoms have got no worse at all. In fact I have seemed to improve a little. I am still completely gluten and dairy free, and I don't eat fruit or raw vegetables. I take 5000iu vitamin D daily and use magnesium oil. I have also been taking a small amount of glutamine.

I hope you continue on in good health and enjoy life Very Happy
_________________
Linda

Lymphocytic Colitis Dec 2015
(symptoms started Nov 2011)
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30710
User's local time:
2017 Nov 19 - 3:17 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 01, 2016 7:54 pm    Post subject: Reply with quote

Thank you both for the updates. Updates are always helpful for others who may be wondering what to do next.

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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janden143

unknown IP

Joined: 27 Jul 2016

Posts: 24
User's local time:
2017 Nov 19 - 9:17 PM


Food Intolerances : Tramadol, scallops. Don't know about the others yet.

PostPosted: Fri Dec 02, 2016 1:23 pm    Post subject: Reply with quote

Thank you Linda and Tex, glad that you are staying well Linda, as am I. I have felt better since I have been on the steroids (first Budesonide and now prednisolone) than I have for the past 10 years because my arthritis is under control as well as the colitis. I have an appointment with the GI on 14th December, then the rheumatologist on 20th December. I hope to avoid the methotrexate!

Stay well. Janden
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30710
User's local time:
2017 Nov 19 - 3:17 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: Fri Dec 02, 2016 4:55 pm    Post subject: Reply with quote

Janden,

As you are probably aware, long-term use of prednisolone commonly leads to adrenal problems and other unpleasant side effects. But recent research shows that budesonide can be safely used for long-term treatment of IBDs, especially at maintenance doses (6 mg per day, or less). If you would like to use budesonide for long-term treatment of your MC, but your specialist is unsure whether that would be safe, please show her or him these online medical research articles:

Low-dose budesonide for maintenance of clinical remission in collagenous colitis: a randomised, placebo-controlled, 12-month trial

http://gut.bmj.com/content/early/2014/11/25/gutjnl-2014-308363.full


Long-term safety and efficacy of budesonide in the treatment of ulcerative colitis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921089/


Budesonide is only mildly to moderately effective against arthritis, but most of us find that if we carefully avoid all traces of gluten and dairy products (which is necessary anyway, to control our MC), then our arthritis symptoms will fade away. About 15 years ago I had severe arthritis, and on bad days I had to use a cane when walking. My diet changes slowly eliminated my arthritis symptoms and today I am still free of arthritis. If I slip up on my diet, my arthritis symptoms return sooner than gastrointestinal symptoms. I also take flax seed oil and glucosamine with chondroitin to help keep my joints healthy.

Good luck with your appointments.

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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Erica P-G
Rockhopper Penguin
Rockhopper Penguin


Joined: 08 Mar 2015

Posts: 1258
User's local time:
2017 Nov 19 - 1:17 PM


Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Fri Dec 02, 2016 6:33 pm    Post subject: Reply with quote

Quote:
If I slip up on my diet, my arthritis symptoms return sooner than gastrointestinal symptoms.


This is sooo true Tex.....dairy is a terrible culprit when it comes to arthritic joints, and I think egg messes with me too...and of course gluten makes the joints ache longer when I slip up even a little bit...which isn't often anymore. I can tell I should have stayed away from something now that I have had some time under my belt to heal. Who'd have known I could be so sensitive feeling to those old foods I used to eat for the last 40 years....so glad the food industry has rounded a corner in more options without all our trigger foods.
_________________
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
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janden143

unknown IP

Joined: 27 Jul 2016

Posts: 24
User's local time:
2017 Nov 19 - 9:17 PM


Food Intolerances : Tramadol, scallops. Don't know about the others yet.

PostPosted: Sat Dec 03, 2016 3:44 pm    Post subject: Reply with quote

Hi Tex, I have read the reports on the long term Budesonide trials and, I must say, it makes rather depressing reading. I am in the UK and I wonder if the decision to give me Prednisolone now,rather than Budesonide, is based on cost. On 6mg per day my arthritis was under control as well as my CC. Does Prednisolone also help with CC? Janden
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30710
User's local time:
2017 Nov 19 - 3:17 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: Sat Dec 03, 2016 6:07 pm    Post subject: Reply with quote

Yes, you were probably prescribed prednisolone because of the low price. Prednisolone is a very old drug, so it's inexpensive compared with budesonide (Entocort). In the U. S., budesonide is a very expensive drug, even with most insurance.

Yes, prednisolone helps to suppress the symptoms of CC, but no physician in the U. S. would prescribe prednisolone for long-term use to treat inflammatory bowel disease because of the long-term health risks. Long-term use pretty much guarantees adrenal damage, osteoporosis, hypertension, and other problems, including addiction. After you take it long enough, if you decide you need to stop taking it . . . you can't stop unless you are willing to suffer intense pain for a month or more.

Please read the posts at the following links, written by the lady who created the first CC discussion and support forum roughly 20 years ago (back before budesonide was available in this country). Note that the first 2 posts were written over 11 years ago.

Sally's meds and other treatments

Prednisone Withdrawal

paging Sally and Marsha.....

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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janden143

unknown IP

Joined: 27 Jul 2016

Posts: 24
User's local time:
2017 Nov 19 - 9:17 PM


Food Intolerances : Tramadol, scallops. Don't know about the others yet.

PostPosted: Sun Dec 04, 2016 4:11 pm    Post subject: Reply with quote

Scary stuff. We are very fortunate in the UK that we don't have to worry about the cost of our drugs. On the other hand, doctors are obliged to be as economical as possible with their prescriptions. I'll have to wait and see what my two consultants come up with next week. Janden
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WhirledPeas
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 22 May 2013

Posts: 138
User's local time:
2017 Nov 19 - 4:17 PM


Food Intolerances : Gluten, dairy, soy, eggs, high fiber, raw produce w/ exceptions pre- May 1 severe flare. 2013 I tested only sensitive to gluten/dairy. C1 test showed some items in 1 category like rice which never bothered me in past.

PostPosted: Sun May 21, 2017 11:26 am    Post subject: Reply with quote

tex wrote:
Janden,

As you are probably aware, long-term use of prednisolone commonly leads to adrenal problems and other unpleasant side effects. But recent research shows that budesonide can be safely used for long-term treatment of IBDs, especially at maintenance doses (6 mg per day, or less). If you would like to use budesonide for long-term treatment of your MC, but your specialist is unsure whether that would be safe, please show her or him these online medical research articles:

Low-dose budesonide for maintenance of clinical remission in collagenous colitis: a randomised, placebo-controlled, 12-month trial

http://gut.bmj.com/content/early/2014/11/25/gutjnl-2014-308363.full


Long-term safety and efficacy of budesonide in the treatment of ulcerative colitis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921089/

Tex


Tex and anyone else that reads this,

This week is the first time I've been on this board since 2013. I'm dealing with a severe flare that in the past I was able to manage with the brat diet and eating very bland. I ate very rich foods at a restaurant against my better judgment. I rarely eat out... 3 weeks into flare and home bound. Tex knows this since I have private messaged him but repeating since this is my first post in a long time.

Does the study only apply to CC? How about LC?

Also, I may be starting Budesdine today or tomorrow 9mg (3 pills at once). If I take the first dose in the late afternoon, do I have to take it at that same time in the future or can I adjust it to 1 PM? If I have to take it at the same time every day, then I shouldn't take it today because my friend can't get here with my prescription she is picking up until later. I don't do well with stimulants like caffeine or Sudafed since sometimes especially now I have difficulty falling asleep due to so much uncertainty/anxiety with my recent severe flare ... especially now I have difficulty falling asleep due to so much uncertainty with my recent severe flare whigh is my first unmanageable one ever. I've lost at least 7 pounds in three weeks.

Earlier this year when I had a blood panel I believe my vitamin D levels were normal. That's when I was stable and eating a balanced at least for me diet.

I'm not sure if you get notifications when someone replies so perhaps also send me a private message since this drug question is very time sensitive.

Thank you so much Tex and anyone else that can reply this afternoon. Greatly appreciated.

W.
_________________
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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brandy
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 16 Oct 2011

Posts: 1950
User's local time:
2017 Nov 19 - 3:17 PM


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

PostPosted: Sun May 21, 2017 11:50 am    Post subject: Reply with quote

Hi Peas,

https://medlineplus.gov/druginfo/meds/a608007.html

Scroll down and you will see that budesonide is taken once a day in the morning at the same time every day.

My prescription said on the label to take it once a day in the morning. When I started I took all 3 capsules in the morning at roughly the same time every day.

Brandy
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brandy
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 16 Oct 2011

Posts: 1950
User's local time:
2017 Nov 19 - 3:17 PM


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

PostPosted: Sun May 21, 2017 11:53 am    Post subject: Reply with quote

Once you get the flare under control I find taking 400 mg magnesium glycinate in the evening helps me to fall asleep. DO NOT TRY THIS WHILE YOU HAVE THE FLARE ONGOING.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30710
User's local time:
2017 Nov 19 - 3:17 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: Sun May 21, 2017 12:14 pm    Post subject: Reply with quote

LC is treated exactly the same way as CC. As Brandy points out, while you can take budesonide any time without any medical risks, it works best in the mornings. It can keep you awake. It makes some people hyperactive. That depends on your normal cortisone level. It's less likely to keep you awake when taken first thing in the mornings. That allows the concentration in your blood to decline by bedtime. You're probably low on magnesium, if you have anxiety symptoms. I agree with Brandy, magnesium treats anxiety, and helps you sleep.

If you are avoiding gluten and casein, it should stop the D in a day or two. Reduce the dose when you begin to have constipation. For best response from budesonide or most anti-inflammatory medications that work by suppressing mast cell activity, your vitamin D level should be at least 40 ng/mL or more, preferably in the 50–60 ng/mL range.

There's a box you can check when posting if you want the system to send a notification when there's a response. Or, alternatively, you can just check the board for new posts occasionally.

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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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7210
User's local time:
2017 Nov 20 - 7:17 AM


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

PostPosted: Sun May 21, 2017 1:25 pm    Post subject: Reply with quote

welcome back Peas
and sympathies that your flare has been ongoing and your bland diet is not working for you this time

to expand on Brandy's reply about magnesium, and the issues you are having regarding sleep /anxiety etc. what we have learnt in the past couple of years is the importance of magnesium.
one key important aspect is that we need good levels of magnesium for Vit D3 to be used properly in the body
there are numerous other important reasons for Magnesium and many here have seen vast improvement once they have a good magnesium intake (there are a few good posts in the success stories area)

a good starting point is having epsom salt foot soaks /baths, especially in the afternoon or evening as this will relax the body ready for sleep. using topical magnesium oil is a safe way to get good magnesium without any risk to upsetting the digestion.

hope this helps
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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WhirledPeas
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 22 May 2013

Posts: 138
User's local time:
2017 Nov 19 - 4:17 PM


Food Intolerances : Gluten, dairy, soy, eggs, high fiber, raw produce w/ exceptions pre- May 1 severe flare. 2013 I tested only sensitive to gluten/dairy. C1 test showed some items in 1 category like rice which never bothered me in past.

PostPosted: Sun May 21, 2017 1:31 pm    Post subject: Reply with quote

Tex,

These are my vitamin D levels from early March 2017 when healthy/stable when I participated in a volunteer heart study at no cost to me. I have high cholesterol total 298 and triglycerides 245 due to my diet with MC. Not enough fiber in my diet due to side effects BM wise. HDL is 42. LDL is 205. I was prescribed a statin, but have not taken it.

Vitamin D(1,25OHD),LCMSMS
Vitamin D,1,25 (OH)2,Total 50
Vitamin D3, 1,25 (OH)2 50 Vitamin D2, 1,25 (OH)2 <8

I am retired and have always been a night owl and go to bed anywhere between 1 AM and 3 AM. Since the severe flare, I have tried to get in bed between 1 AM and 2 AM but that does not mean I fall asleep. Under normal conditions I fall asleep within 30 minutes and do not suffer from anxiety on a regular basis. Only under very high stress which I am now from this unfamiliar severe flare. Until yesterday I did not have much support in person. Very grateful for my friend coming over yesterday and she is returning this evening. :)

So in order for me to take the pill at a regular consistent time schedule I would have to take it at noon or 1 PM to ensure consistency of time. Do you think 12 hours is enough to better ensure that it does not keep me awake at night if I go to bed at 1 AM or so? I don't know if consistency is more important or occasionally taking it in the morning on an empty stomach if I wake up to go to the bathroom and then go back to bed if I did not sleep well or enough.

Thank you kindly! 🌻
_________________
1st severe flare 5/1/17 Budesonide started 6/7/17. MC/Gastritis 5/2013; IBS/GERD 2001nobiopsy. Celiac biopsy neg2013. Protonix2001-2006.
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