Apologies for taking so long to respond to this thread.
I am so grateful to have this site to turn to, and feel as though all I do is take without giving back (as I don't have MC myself so can't really contribute to any responses) - I am excited to see the threads about the Foundation and have posted in that forum to see if there is anything I can help with :)
To save you reading back: my mum has CC, has been on Entocort (2 per day) for about 3 years now and unfortunately had a relapse at the beginning of this year.
I'm happy to report the relapse went away after a couple of months - her GI isn't sure why - by the time he saw her in April she was fine and he just said maybe it was an infection. He keeps her on annual blood tests and nothing was really indicative in there.
So on the plus side, no D and all good in that area.
On the not so plus side: a sore heel revealed severe osteoporosis in a bone scan. Not surprising considering she had just about every single risk factor - the long term Entocort is probably the least of her concerns. Her GP suggested Fosamax - we have both read up a bit on it and aren't that keen so she has decided to do whatever other improvements she can and get another bone scan in one year. The improvements she has made include
- quitting smoking (going on 5 months smoke free now)
- taking 1 x calcium tablet every day - her GP originally had her on combined Vit D / calcium - her GI told her to stop taking the calcium and just buy Vit D as "her blood calcium levels are fine". I've since learned from Osteoporosis Australia that blood calcium levels are a terrible way of checking someone's bone health because in severe osteoporosis, the calcium is leaving the bones going into the blood stream so the numbers you're seeing are actually all the calcium on it's way out. Interestingly, Osteoporosis Australia also mentioned to me that a maximum of 1 x 500mg calcium tablet should be taken each day and the rest from diet, as too much from the tablets can damage your heart. They were very annoyed that the bottle of calcium tablets said to take 2 x 500mg per day.
- she saw my GP when she was staying with me for a few weeks and he was amazingly proactive with some advice and tests including bringing up how underweight she is and prescribing Fortisip nutritional supplement. Her weight was under 40kg (she is very small build and has always been skinny but not underweight). For the past couple of years her own GP and her GI would just have a go at her and say she needed to "eat more" - her GI even said that the only way CC affects your weight is by the patient choosing not to eat enough because they are sick of the D! Never mind anything about less effective absorption etc - apparently it was all her own fault. The Fortisip has made a massive difference including gaining almost 10kg and improved health/strength.
- a new study from Griffith University found that high load resistance training is making a big difference to bone health - Griffith Uni article. I got in touch with Prof Belinda Beck and she put me on to an exercise physiologist who knew about the new info. Mum has been going to their gym a few times a week and doing some easy resistance training at home the other days.
Sorry for the long post, but felt I should share this info in case there are others over 60 years old on long term Entocort who may benefit from knowing about bone health :) Get a bone scan, it is quick and painless.
On top of the above, she also had a close friend die a few months ago and so we've been dealing with that plus she was the executor for his will which brought another set of work.
Lastly, recently she has had a few pains occasionally when breathing in (she describes it as like a stitch) - she saw a new GP the other day, and he looked at her latest blood test and said that being on Entocort long term could lead to high urate which would be giving her heartburn. He recommended Gaviscon (Aluminum Hydroxide/Magnesium Carbonate) which seems to be working.
With all these side effects from the Entocort she is considering whether to continue taking it. She has read Tex's book (and cried quite a few times during the read - I think from realising she is not suffering alone) and I've told her quite a few times about going gluten/soy/casein free which is no small task.
I am keen for her to get off Entocort because I know anecdotally from the people here who take it that it is likely to become less effective over the years. But also wary because a GF/soy/casein free diet requires a lot of commitment and stopping the Entocort then restarting is also likely to reduce it's effectiveness. Seems like a double edged sword no matter the route chosen.
Tex's book & few questions on relapse
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Shona,
The key to preventing or treating osteoporosis it not calcium — it's vitamin D and magnesium. Virtually everyone has plenty of calcium in their diet for good bone health. But most people are deficient in either vitamin D or magnesium, or both. If a calcium supplement is taken, then an equal amount of magnesium should be taken, otherwise the body is unable to properly utilize the calcium, to get it to the bones where it is needed. Otherwise, too much calcium in the blood can cause all sorts of problems such as plaque, kidney stones, sudden cardiac arrest, etc. And of course there has to be more than enough vitamin D available because magnesium and vitamin D work together to use calcium to build new bone tissue.
The old outdated claim that the ratio of calcium to magnesium should be 2 to 1 is now known to be incorrect. The ratio should be 1 to 1 for optimum bone health
Osteoporosis Australia is quite correct that serum calcium levels are usually irrelevant for osteoporosis issues. The body will always maintain a "normal" blood level of calcium if it possibly can, because calcium is a vital electrolyte. The same thing happens with magnesium. It's virtually always pointless to measure blood levels of magnesium because the body will draw magnesium from muscle cells in order to keep the blood level in the "normal" range. The severe limitations of those blood tests (and the lack of understanding by physicians) is the reason why most people in the world are magnesium deficient today, and why so many people take a calcium supplement when it is unjustified.
If a blood test actually shows a deficiency of either calcium of magnesium, quick action may be needed, because all sorts of life-threatening issues can develop when the body's reserve supplies of these electrolytes becomes depleted. But too much calcium (or not enough magnesium) is probably significantly more dangerous than too little calcium. The point is, those blood tests are basically worthless unless the patient is already in a life-threatening situation.
Please note that in addition to MC depleting vitamin D levels, corticosteroids such as budesonide also deplete vitamin D, and without adequate vitamin D (and magnesium), osteoporosis is virtually guaranteed, no matter how much calcium is ingested.
I hope that some of this is helpful.
Tex
The key to preventing or treating osteoporosis it not calcium — it's vitamin D and magnesium. Virtually everyone has plenty of calcium in their diet for good bone health. But most people are deficient in either vitamin D or magnesium, or both. If a calcium supplement is taken, then an equal amount of magnesium should be taken, otherwise the body is unable to properly utilize the calcium, to get it to the bones where it is needed. Otherwise, too much calcium in the blood can cause all sorts of problems such as plaque, kidney stones, sudden cardiac arrest, etc. And of course there has to be more than enough vitamin D available because magnesium and vitamin D work together to use calcium to build new bone tissue.
The old outdated claim that the ratio of calcium to magnesium should be 2 to 1 is now known to be incorrect. The ratio should be 1 to 1 for optimum bone health
Osteoporosis Australia is quite correct that serum calcium levels are usually irrelevant for osteoporosis issues. The body will always maintain a "normal" blood level of calcium if it possibly can, because calcium is a vital electrolyte. The same thing happens with magnesium. It's virtually always pointless to measure blood levels of magnesium because the body will draw magnesium from muscle cells in order to keep the blood level in the "normal" range. The severe limitations of those blood tests (and the lack of understanding by physicians) is the reason why most people in the world are magnesium deficient today, and why so many people take a calcium supplement when it is unjustified.
If a blood test actually shows a deficiency of either calcium of magnesium, quick action may be needed, because all sorts of life-threatening issues can develop when the body's reserve supplies of these electrolytes becomes depleted. But too much calcium (or not enough magnesium) is probably significantly more dangerous than too little calcium. The point is, those blood tests are basically worthless unless the patient is already in a life-threatening situation.
Please note that in addition to MC depleting vitamin D levels, corticosteroids such as budesonide also deplete vitamin D, and without adequate vitamin D (and magnesium), osteoporosis is virtually guaranteed, no matter how much calcium is ingested.
I hope that some of this is helpful.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Shona
welcome back!
just to reiterate what Tex has said above, Magnesium!
there are loads of published articles about magnesium deficiency and osteoporosis
http://www.huffingtonpost.com/carolyn-d ... =Australia
welcome back!
just to reiterate what Tex has said above, Magnesium!
there are loads of published articles about magnesium deficiency and osteoporosis
http://www.huffingtonpost.com/carolyn-d ... =Australia
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
If she's only taking 500 mg of calcium per day, that shouldn't be a significant problem. I doubt that she needs it, if she's eating a regular diet, but it shouldn't hurt (provided that she has plenty of vitamin D and magnesium).
Topical magnesium is the safest (because too much of the wrong kind of oral magnesium acts as a laxative). Gabes can do a better job of advising you on using topically-applied magnesium than I can. If your mum prefers an oral magnesium supplement, or a combination of oral and topically-applied magnesium, the safest form is chelated magnesium, aka magnesium glycinate. It does not normally cause diarrhea. Magnesium oxide is notorious for causing D, and too much magnesium citrate (or any to the other forms) can become a laxative, also. But be sure that the chelated magnesium label does not say "buffered", because "buffered" magnesium products are buffered with cheap magnesium oxide, and not only does the magnesium oxide have very poor absorbability, but it is notorious for causing D.
Note that virtually all magnesium supplements (at least in this country) are labeled so that the amount shown on the front label is usually twice the amount in each tablet. The amount displayed is the amount "per serving" as they put it, and if you read the label on the back you will see that the serving size is usually 2 tablets. It's very misleading, but pharmaceutical companies apparently love to mislead customers, and that type of labeling seems to be a standard practice.
The RDA for magnesium is about 350 mg for women, and it's usually a good idea for most of us to take at least that amount. Many take twice that much, especially if they are trying to eliminate a deficiency condition. But with the higher doses (400 mg and up), it's usually a good idea to get at least some of the magnesium from skin applications. It's possible to absorb all of one's magnesium needs through the skin, and completely bypass the digestive system potential problems. We are not able to absorb all of the magnesium in tablets. The absorption rate depends on our digestive system performance, and on the dose. The more we take, the lower the percentage that we absorb. Therefore, it's best to space out doses during the day. I take mine after each meal.
Tex
Topical magnesium is the safest (because too much of the wrong kind of oral magnesium acts as a laxative). Gabes can do a better job of advising you on using topically-applied magnesium than I can. If your mum prefers an oral magnesium supplement, or a combination of oral and topically-applied magnesium, the safest form is chelated magnesium, aka magnesium glycinate. It does not normally cause diarrhea. Magnesium oxide is notorious for causing D, and too much magnesium citrate (or any to the other forms) can become a laxative, also. But be sure that the chelated magnesium label does not say "buffered", because "buffered" magnesium products are buffered with cheap magnesium oxide, and not only does the magnesium oxide have very poor absorbability, but it is notorious for causing D.
Note that virtually all magnesium supplements (at least in this country) are labeled so that the amount shown on the front label is usually twice the amount in each tablet. The amount displayed is the amount "per serving" as they put it, and if you read the label on the back you will see that the serving size is usually 2 tablets. It's very misleading, but pharmaceutical companies apparently love to mislead customers, and that type of labeling seems to be a standard practice.
The RDA for magnesium is about 350 mg for women, and it's usually a good idea for most of us to take at least that amount. Many take twice that much, especially if they are trying to eliminate a deficiency condition. But with the higher doses (400 mg and up), it's usually a good idea to get at least some of the magnesium from skin applications. It's possible to absorb all of one's magnesium needs through the skin, and completely bypass the digestive system potential problems. We are not able to absorb all of the magnesium in tablets. The absorption rate depends on our digestive system performance, and on the dose. The more we take, the lower the percentage that we absorb. Therefore, it's best to space out doses during the day. I take mine after each meal.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Shona
i found the ethical nutrients Mega Magnesium tablets the best, they are 'MC friendly' (no additives) you can break the tablets in half and spread the dose through the day with meals to minimise issues on the gut.
places like Chemist Warehouse or other discount pharmacys have this about 30% off most of the time and every 3-4 months have it 50% off
the other product I use, which is more expensive and has more ingredients (as I take it for other issues) is the Orthoplex Mag Opti. This is a practitioner only product (powder) so is only available via practitioner or compounding pharmacy. it has good forms of magnesium and absorbs well. I have small amount morning and night.
the main form of my magnesium is via liquid via spray NTS Magsorb I buy direct from the producer (web site is having hiccups right now) it is also available in health food shops, and other online places. I buy the 1 litre bottle, and got a small funnel from cookware shop and I transfer it down to small bottles that i have around the house, i spray the top of my legs when i go to the toilet, arms shoulders when I am on the computer, and spray whole body morning and night. Doing the spraying through the day I am getting about 600mg elemental magensium each day just via the spray.
it may appear expensive but in the comparison of value for good quality elemental magnesium it works out cheaper than oral delivery.
Using the combo of the tablets and spray is a good way to get the 600-800mg elemental magnesium per day.
As Tex has mentioned above, read the small print on the back of the label. what is advertised as a 100mg tablet on the front of the label, may only have 50mg of elemental magnesium or require 2 tablets for that dosage. so the product will appear cheaper on the shelves.
not sure which Vit D3 you are using, now my gut is settled i have swapped from the lingual version to capsules to save money. Now Foods, brand of Vit D3 it has K2 as well. I buy it from iHerb. Again it is MC friendly and well priced. iHerb delivery via Aus Post is under $10 and the orders arrive within 8 working days...
Doing the diet changes can be a bit intense at first but once you get into the routine of meals etc,it is then minimal effort.
The hard part with diet is that there is no 'half way or sometimes' It is kinda all or nothing.
Being in Aus, we are very very lucky that with our labelling laws, etc and the range of products it is way easier to do compared to 5-8 years ago. (i have been gluten free lactose free for 15 years)
i found the ethical nutrients Mega Magnesium tablets the best, they are 'MC friendly' (no additives) you can break the tablets in half and spread the dose through the day with meals to minimise issues on the gut.
places like Chemist Warehouse or other discount pharmacys have this about 30% off most of the time and every 3-4 months have it 50% off
the other product I use, which is more expensive and has more ingredients (as I take it for other issues) is the Orthoplex Mag Opti. This is a practitioner only product (powder) so is only available via practitioner or compounding pharmacy. it has good forms of magnesium and absorbs well. I have small amount morning and night.
the main form of my magnesium is via liquid via spray NTS Magsorb I buy direct from the producer (web site is having hiccups right now) it is also available in health food shops, and other online places. I buy the 1 litre bottle, and got a small funnel from cookware shop and I transfer it down to small bottles that i have around the house, i spray the top of my legs when i go to the toilet, arms shoulders when I am on the computer, and spray whole body morning and night. Doing the spraying through the day I am getting about 600mg elemental magensium each day just via the spray.
it may appear expensive but in the comparison of value for good quality elemental magnesium it works out cheaper than oral delivery.
Using the combo of the tablets and spray is a good way to get the 600-800mg elemental magnesium per day.
As Tex has mentioned above, read the small print on the back of the label. what is advertised as a 100mg tablet on the front of the label, may only have 50mg of elemental magnesium or require 2 tablets for that dosage. so the product will appear cheaper on the shelves.
not sure which Vit D3 you are using, now my gut is settled i have swapped from the lingual version to capsules to save money. Now Foods, brand of Vit D3 it has K2 as well. I buy it from iHerb. Again it is MC friendly and well priced. iHerb delivery via Aus Post is under $10 and the orders arrive within 8 working days...
yes that is the sucky part, there is no easy solution, guaranteed solution. Each path has a few challenges.Seems like a double edged sword no matter the route chosen.
Doing the diet changes can be a bit intense at first but once you get into the routine of meals etc,it is then minimal effort.
The hard part with diet is that there is no 'half way or sometimes' It is kinda all or nothing.
Being in Aus, we are very very lucky that with our labelling laws, etc and the range of products it is way easier to do compared to 5-8 years ago. (i have been gluten free lactose free for 15 years)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama