I was diagnosed with LC today...

[tex]

Joanne,

Here are a couple of quotes from an article by an OB/GYN, and a link to the article is below.

If your body can’t metabolize calcium properly from your diet because of deficiencies elsewhere it won’t matter how much calcium you eat, your body will take it from your bones. This triggers more osteoblast activity, but bone needs the same nutrients to form—so over time the whole system weakens and affects other body functions.

Magnesium is another mineral that must be present for you to utilize calcium. Magnesium increases calcium absorption form the blood into the bone. Dairy products contain little magnesium and alcohol depletes it. Too much calcium blocks the absorption of magnesium, leading to a deficiency characterized by hair loss, muscle cramps, irritability, trembling, and disorientation.

Osteoporosis, Calcium, Magnesium, Vitamin D And Other Minerals

Tex

[Jumpindogs]

I have three friends that have taken Fosamax. All three had bad reactions from it and two of them developed ongoing GI symptoms and have to eat a restricted diet now.

I experience restless leg syndrome but I have noticed that this only happens when I eat too much sugar. I did a search and it seems that sugar also depletes magnesium. Doesn't seem like there is any benefit in sugar but the taste in pretty nice. I have heard it said that it should be used only as a recreational drug!

Jumping, I love your happy smiling picture with your beautiful dog

Sorry about your friends and Fosamax. I had no clue the biphosphonates were so nasty although all three of my Osteo docs did talk about the new data regarding atypical fractures (and the rare jaw problems) associated with long term use. It seemed somewhat hypocritical...a drug that prevents bone breaks causes bone breaks...but they had no other suggestions and I didn't want to break a bone for the apparently more common reason. My insurance company just declined my appeal for Reclast for the second time (filed just prior to my LC diagnosis). Could be a divine intervention.

Sugar messes with my lipids so I stay away to avoid going on a statin. But I agree on the yummy!

Thanks, Linda. :-) That's my certified therapy dog Tango, confiscated from an animal hoarder as a neglect/abuse case and now warming the hearts of the residents of our local nursing home. Although I haven't been able to go lately cause I am afraid of not getting to a bathroom fast enough. :-( Your furry friend is a cutie too!

[Jumpindogs]

Joanne,

Here are a couple of quotes from an article by an OB/GYN, and a link to the article is below.

If your body can’t metabolize calcium properly from your diet because of deficiencies elsewhere it won’t matter how much calcium you eat, your body will take it from your bones. This triggers more osteoblast activity, but bone needs the same nutrients to form—so over time the whole system weakens and affects other body functions.

Magnesium is another mineral that must be present for you to utilize calcium. Magnesium increases calcium absorption form the blood into the bone. Dairy products contain little magnesium and alcohol depletes it. Too much calcium blocks the absorption of magnesium, leading to a deficiency characterized by hair loss, muscle cramps, irritability, trembling, and disorientation.

Osteoporosis, Calcium, Magnesium, Vitamin D And Other Minerals

Tex

Thanks so much, Tex!

[Jumpindogs]

This article refers to the BMJ published study of 2010
http://drcarolyndean.com/2010/08/cancel-the-calcium/

Calcium is prominent in the news these days. A July 29, 2010 British Medical Journal meta-analysis says that “Risks outweigh benefits for calcium supplements.” This study indicates that calcium supplements cause more cardiovascular events (such as heart attacks and stroke) than the number of fractures they prevent.

The study analyzed data on 12,000 people involved in the 15 trials. The increased risk was about 30 percent. The seven authors of the study say the risk is modest but they are concerned that with so many people taking calcium supplements “even a small increase in incidence of cardiovascular disease could translate into a large burden of disease in the population.” They even go so far as to “suggest that a reassessment of the role of calcium supplements in the prevention and treatment of osteoporosis is warranted.”

this article refers to the same study
http://www.nutraingredients.com/Researc ... a-analysis

some links to more studies
http://www.ncbi.nlm.nih.gov/pubmed/2352244
http://www.ncbi.nlm.nih.gov/pubmed/9705567

I have the Dr Carolyn Dean book 'magnesium miracle' there is a chapter about osteoporosis / kidney stones.
there are 25 references for that chapter, if you are interested I can scan those pages and email them to you.
It was published 10 years or so ago, Tex may have more up to date references / links

Thank you, Gabes! I will get to reading all this data at the end of the week when I have some time.

[Jumpindogs]

I would appreciate your collective thoughts on this...

I am currently on 9 mg Uceris every other day for 12 days and one OTC Loperamide every 12 hours. I am also on the elimination diet...naked chicken with naked red and sweet potatoes (cooked in olive oil and salt), bananas, organic applesauce and water. I think both the diet and the Uceris helped as my BMs reduced substantially...and I mean majorly...in frequency and quantity. The twice daily Loperamide helped alleviate the urgency. My Bristol scores have gone from 7/6s to 5s.

I know I should not test additional foods until I am healed. My brain is telling me that I won't know if I am healed until I am off the Uceris and Loperamide. Does that make sense?

[Jumpindogs]

In case you are interested, I did share the Amazon link to Tex's book and some of the information I've learned with my GI doc's PA this past Friday. I met with some resistance...she took the description on Amazon "Some doctors seem to confuse it with IBS and they try to treat it as though it were IBS." as reflecting their specific practice and strongly explained that they definitely know the difference between MC and IBS. She obviously took the word "some" to mean "all" which I saw as a defensive reaction. So I did not pursue although I did point out the word "some" in the book description.

When I asked her what causes this disease she said there is no reason...just one of those things that happen. When I asked her opinion on the elimination diet she asked a few questions, such as am I waiting to introduce foods until I am healed and how long will I wait to see if symptoms develop...which was good...but then suggested we cross that bridge when we come to it. Certainly my GI doc may have answered differently. I was unfortunately too surprised at my appointment on the 12th to ask him much. My bad.

When I see him next...not sure when that will be...I will talk to him about the book. Maybe I will bring him a copy. :-)

[tex]

It seemed somewhat hypocritical...a drug that prevents bone breaks causes bone breaks...

Your insurance company may be getting tired of losing lawsuits to dissatisfied bisphosphonate patients. Actually a surprising number of drugs have this same iatrogenic characteristic. That is, they cause the very same problem that they are prescribed to treat. Proton pump inhibitors are a prime example of this. PPIs weaken the strength of the lower esophageal sphincter, so that after a week or so of use, the acid reflux problem is much worse than it was originally.

But the patient is unaware of the problem because the PPIs neutralize the stomach acid so that the patient is unable to feel the refluxed stomach contents in their esophagus. Then when they try to stop using the PPI they discover that their symptoms are much worse than they were to begin with. That was a guaranteed outcome when the physician wrote the prescription, and yet she or he wrote it anyway. Why?

Doctors should know better. They're supposed to be trained to know better. But unfortunately they're trained to treat the symptoms, apparently with limited regard for the long-term risks/consequences to patient health. I can't decide whether to view such professional behavior as a brain fart or an attempt to insure that there will be plenty of repeat business. LOL.

I know I should not test additional foods until I am healed. My brain is telling me that I won't know if I am healed until I am off the Uceris and Loperamide. Does that make sense?

Yes. You are correct.

Please don't be surprised if your doctor makes fun of the book. Many physicians turn up their nose at anything written on medical issues by any author who has no official medical background, especially when what is written contradicts their training and their treatment methods. And that's certainly understandable because they sacrificed a lot to get through medical school and residency, to say nothing of specialty requirements in order to be certified as a legal expert in the state in which they practice. But I've found that some medical professionals who have an open mind and who are not blinded by professional snobbery tend to appreciate the book, including my own PCP.

Specialists who work in a group practice usually have to follow the guidelines adopted by the organization or the department, and those guidelines typically have to adhere to restrictions imposed by their legal counsel. Because of those restrictions, they are not allowed to use treatment methods that are not proven by published, peer-reviewed medical research.

Tex

[Adelaide]

Sugar messes with my lipids so I stay away to avoid going on a statin. But I agree on the yummy!

Your furry friend is a cutie too!

I had no idea that sugar could affect your cholesterol levels. That will be a positive to cutting right down on sugar then. The doctor talked to me at one point about taking a statin and I flat out refused. My Dad is sure that he got severe peripheral neuropathy from statins.

I think my furry friend is a cutie too Joanne. Unfortunately she has passed now. I bred her and she lived for nearly 15 years. I like seeing her as my profile picture

[Jumpindogs]

It seemed somewhat hypocritical...a drug that prevents bone breaks causes bone breaks...

Your insurance company may be getting tired of losing lawsuits to dissatisfied bisphosphonate patients. Actually a surprising number of drugs have this same iatrogenic characteristic. That is, they cause the very same problem that they are prescribed to treat. Proton pump inhibitors are a prime example of this. PPIs weaken the strength of the lower esophageal sphincter, so that after a week or so of use, the acid reflux problem is much worse than it was originally.

But the patient is unaware of the problem because the PPIs neutralize the stomach acid so that the patient is unable to feel the refluxed stomach contents in their esophagus. Then when they try to stop using the PPI they discover that their symptoms are much worse than they were to begin with. That was a guaranteed outcome when the physician wrote the prescription, and yet she or he wrote it anyway. Why?

Doctors should know better. They're supposed to be trained to know better. But unfortunately they're trained to treat the symptoms, apparently with limited regard for the long-term risks/consequences to patient health. I can't decide whether to view such professional behavior as a brain fart or an attempt to insure that there will be plenty of repeat business. LOL.

I know I should not test additional foods until I am healed. My brain is telling me that I won't know if I am healed until I am off the Uceris and Loperamide. Does that make sense?

Yes. You are correct.

Please don't be surprised if your doctor makes fun of the book. Many physicians turn up their nose at anything written on medical issues by any author who has no official medical background, especially when what is written contradicts their training and their treatment methods. And that's certainly understandable because they sacrificed a lot to get through medical school and residency, to say nothing of specialty requirements in order to be certified as a legal expert in the state in which they practice. But I've found that some medical professionals who have an open mind and who are not blinded by professional snobbery tend to appreciate the book, including my own PCP.

Specialists who work in a group practice usually have to follow the guidelines adopted by the organization or the department, and those guidelines typically have to adhere to restrictions imposed by their legal counsel. Because of those restrictions, they are not allowed to use treatment methods that are not proven by published, peer-reviewed medical research.

Tex

Thanks for explaining all this, Tex. It's in line with what I was thinking on some points so good to see some validation.

Gonna start looking for a DO when my insurance changes in November in the hopes of reaching an open mind. Until then I will politely and respectfully provide references to my PCP, GI doc and Osteo doc to aid in our discussions of my treatment plans. I am actually pretty excited about the prospect of seeing how raising my mag levels might resolve some issues...osteoporosis, arthritis and tachycardia for starters.

Tex and Gabes...the links are eye-opening. Thank you so much for those. And I cannot thank you all enough for helping me. I am feeling much less overwhelmed than I was before. Your kindness and all this new information is huge for me. Sending love and gratitude to all!

BTW, just wanted to share that every time I look at my boring chicken/potato meal with frustration I am reminded how so many on our planet have nothing to eat. Then I feel hugely blessed by my boring chicken and potatoes!

[Jumpindogs]

Another question if you all don't mind. About weaning off budesonide.

My doc has me on one 9 mg Uceris every other day for 24 days, provided to me at no cost as samples. When I called to ask about weaning off, his PA said that the vast majority of their MC patients do well on this protocol and do not relapse. But everything I've read on this forum advises a weaning off period. Does it make sense that with dosing every other day a weaning off period may not be as necessary? I don't wanna encourage relapse but it's hard to argue with their experience.

Thanks!

[tex]

Hi Joanne,

To put the PA's comments into context you have to realize that this is a standard line (explanation) used in the GI specialty and probably many other medical specialties. IOW, this is the program that they follow because they believe it is the best way to proceed (until proven otherwise).

Uceris is not like Entocort or generic budesonide, or prednisone. Entocort becomes activated in the ileum and colon. Up to roughly 20 % of the budesonide in Entocort can enter the blood stream because it activates in the ileum. This is so much better than prednisone because with prednisone there is no delayed activation, so a very high percentage can enter the bloodstream Uceris does not become activated until is is well into the colon so that none of it should enter the bloodstream to disrupt adrenal performance the way that other corticosteroids do.

Because of that, no tapering is required with Uceris because there should be no adrenal effects.

That said, the main reason why we (the members of this board) taper budesonide treatments is because when the drug treatment is ended, a rebound effect occurs that triggers increased mast call production and activation. This occurs because the primary mode by which corticosteroids suppress inflammation is by suppressing the production and activation of mast cells. So naturally when the drug is withdrawn, mast call numbers are going to rebuild. If the drug is stopped abruptly, the rebound can overshoot, resulting in much more mast cell activity than there was to begin with, and this can trigger an MC relapse. By tapering the withdrawal, this rebound effect is minimized.

We don't know if Uceris can cause this rebound effect if it is stopped too abruptly, because so far, no one has reported a relapse after stopping Uceris. But that may be because most (not all) taper their dosage. We just don't have enough usage data to know for sure.

I have a hunch that tapering with Uceris is not anywhere near as important as tapering with Entocort or generic budesonide, and it may not be necessary at all. So yes, I generally agree with your Doc's PA. The tapering procedure with Entocort is much more important for those who have histamine/mast cell issues than it is for those who do not have those issues.

I hope that this is helpful.

Tex

[Jumpindogs]

Hi Joanne,

To put the PA's comments into context you have to realize that this is a standard line (explanation) used in the GI specialty and probably many other medical specialties. IOW, this is the program that they follow because they believe it is the best way to proceed (until proven otherwise).

Uceris is not like Entocort or generic budesonide, or prednisone. Entocort becomes activated in the ileum and colon. Up to roughly 20 % of the budesonide in Entocort can enter the blood stream because it activates in the ileum. This is so much better than prednisone because with prednisone there is no delayed activation, so a very high percentage can enter the bloodstream Uceris does not become activated until is is well into the colon so that none of it should enter the bloodstream to disrupt adrenal performance the way that other corticosteroids do.

Because of that, no tapering is required with Uceris because there should be no adrenal effects.

That said, the main reason why we (the members of this board) taper budesonide treatments is because when the drug treatment is ended, a rebound effect occurs that triggers increased mast call production and activation. This occurs because the primary mode by which corticosteroids suppress inflammation is by suppressing the production and activation of mast cells. So naturally when the drug is withdrawn, mast call numbers are going to rebuild. If the drug is stopped abruptly, the rebound can overshoot, resulting in much more mast cell activity than there was to begin with, and this can trigger an MC relapse. By tapering the withdrawal, this rebound effect is minimized.

We don't know if Uceris can cause this rebound effect if it is stopped too abruptly, because so far, no one has reported a relapse after stopping Uceris. But that may be because most (not all) taper their dosage. We just don't have enough usage data to know for sure.

I have a hunch that tapering with Uceris is not anywhere near as important as tapering with Entocort or generic budesonide, and it may not be necessary at all. So yes, I generally agree with your Doc's PA. The tapering procedure with Entocort is much more important for those who have histamine/mast cell issues than it is for those who do not have those issues.

I hope that this is helpful.

Tex

Tex...I love you! Now to break it to my hubby. Hahaha!

[Jumpindogs]

Jumping on the magnesium bandwagon. Using Ancient Minerals mag lotion twice daily, soaking feets in an Epsom salts bath nightly, ordered Doctor's Best mag and Dr. Dean's Magnesium Miracle. And spreading the word on magnesium to my friends and loved ones.

[tex]

(on the magnesium)

(on breaking the news to your hubby)

Tex

[Adelaide]

Joanne and the Recycled Aussies

I just have to ask Joanne, who or what are Recycled Aussies?