Dear Friends,
Forgive me. I have not posted much lately..... and now (selfishly) I want a hug.
I, Icarus-like, was flying high with my multi-intolerance diet and one entocort a day...... over confident as the optimist I am (want to still be).
BUT..... then..... while sailing this Sunday..... simply pulling in a sheet (rope of a sail) I had a stress event that did something to my left rib (last time this happened it was pulling off a gum boot). So... I now again have a rib fracture - which is very painful and will take a couple of months to heal (at least I hope it will heal in that time).
Three things....
1. Can I (with MC) tactically take Panadol to ease the pain?? (I am told it is not a NSAID)
2. I need to seriously consider Osteoporosis drugs....but I really worry about them. Are they safe?
3. Medical "experts" say that steroids can be a contributor to osteoporosis (but so is malabsorbition). How do I balance the pros and cons of Entrocort?
I know all this has been debated here before, but would welcome a review of my options.....knowing we are talking trade-offs of less then ideal solutions.
Best wishes, ant
Another Rib Fracture, and selfish indulgence
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Another Rib Fracture, and selfish indulgence
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Ant,
Wow! That's a heck of a note. I have to agree that you need to look at your treatment options for osteoporosis.
First off, Panadol is only acetaminophen, isn't it? Therefore, it shouldn't antagonize the MC.
Personally, I'm not convinced that the bisphosphonates are safe. Their mode of action leaves a lot to be desired, and using them can sometimes lead to dangerous health risks, (as in the case of tooth abscesses leading to serious jaw infections). Besides that, what bothers me the most is that they work by preventing the re-absorption of bone, rather than by generating new bone tissue. So the end result is a bunch of old, hard, bone tissue - that's not a healthy state. Bone tissue needs to be replaced with new bone, on a regular basis, but that's impossible with the bisphosphonates. That said, they do prevent the further deterioration of existing bone, to a significant extent. I guess that I'm just not comfortable with the concept of improving bone strength by fossilizing it, ("freezing" it where it is, and not allowing the replacement of old tissue with new tissue).
As far as I can tell, though, the only other notable medical intervention available, seems to be the use of strontium to promote new bone growth. A few years ago, this was heralded as a breakthrough in the treatment of osteoporosis, but I haven't seen much new activity, since then. I don't know if further research results have not been promising, of if the medical community is simply not interested in pursuing this line of treatment. I'm guessing the latter, since in general, doctors seem to be more interested in promoting the status quo, (most of them are happy with the bisphosphonates), than in developing more effective treatment methods, especially when the new treatment methods are radically different from what they're accustomed to using.
http://www.worldhealth.net/news/stronti ... osteoporo/
This is a tough nut to crack, because while it's true that budesonide presents a relatively low risk of worsening an osteoporosis problem, (in the short term), this is a long-term problem, and in the long-term, even low risk rates eventually become significant, because of long-term cumulative damage.
What's your 25(OH)D level? IMO, vitamin D is extremely important for someone in your situation. Personally, if I were dealing with this, I would probably try to keep my 25(OH)D level up above 90 ng/mL level, of possible, and I might even try to push it higher, if it seemed to be helping, (but I would keep it under 150 ng/mL). To convert from conventional units to standard international units, (SI), 90 ng/mL is equivalent to 225 nmol/L, and 150 ng/mL is equivalent to 375 nmol/L.
25(OH)D levels above 100 ng/mL, (250 nmol/L), are presumably in the range where vitamin D has therapeutic characteristics. IOW, above 100 ng/mL, (250 nmol/L), but below 150 ng/mL, (375 nmol/L), is where I would maintain my 25(OH)D level if I knew that I was fighting cancer, or a similar major issue that required drastic intervention. I seriously doubt that you would be able to find a doctor, (other than Dr. Cannell), who would agree with this, though. These are definitely uncharted waters.
Tex
Wow! That's a heck of a note. I have to agree that you need to look at your treatment options for osteoporosis.
First off, Panadol is only acetaminophen, isn't it? Therefore, it shouldn't antagonize the MC.
Personally, I'm not convinced that the bisphosphonates are safe. Their mode of action leaves a lot to be desired, and using them can sometimes lead to dangerous health risks, (as in the case of tooth abscesses leading to serious jaw infections). Besides that, what bothers me the most is that they work by preventing the re-absorption of bone, rather than by generating new bone tissue. So the end result is a bunch of old, hard, bone tissue - that's not a healthy state. Bone tissue needs to be replaced with new bone, on a regular basis, but that's impossible with the bisphosphonates. That said, they do prevent the further deterioration of existing bone, to a significant extent. I guess that I'm just not comfortable with the concept of improving bone strength by fossilizing it, ("freezing" it where it is, and not allowing the replacement of old tissue with new tissue).
As far as I can tell, though, the only other notable medical intervention available, seems to be the use of strontium to promote new bone growth. A few years ago, this was heralded as a breakthrough in the treatment of osteoporosis, but I haven't seen much new activity, since then. I don't know if further research results have not been promising, of if the medical community is simply not interested in pursuing this line of treatment. I'm guessing the latter, since in general, doctors seem to be more interested in promoting the status quo, (most of them are happy with the bisphosphonates), than in developing more effective treatment methods, especially when the new treatment methods are radically different from what they're accustomed to using.
http://www.worldhealth.net/news/stronti ... osteoporo/
This is a tough nut to crack, because while it's true that budesonide presents a relatively low risk of worsening an osteoporosis problem, (in the short term), this is a long-term problem, and in the long-term, even low risk rates eventually become significant, because of long-term cumulative damage.
What's your 25(OH)D level? IMO, vitamin D is extremely important for someone in your situation. Personally, if I were dealing with this, I would probably try to keep my 25(OH)D level up above 90 ng/mL level, of possible, and I might even try to push it higher, if it seemed to be helping, (but I would keep it under 150 ng/mL). To convert from conventional units to standard international units, (SI), 90 ng/mL is equivalent to 225 nmol/L, and 150 ng/mL is equivalent to 375 nmol/L.
25(OH)D levels above 100 ng/mL, (250 nmol/L), are presumably in the range where vitamin D has therapeutic characteristics. IOW, above 100 ng/mL, (250 nmol/L), but below 150 ng/mL, (375 nmol/L), is where I would maintain my 25(OH)D level if I knew that I was fighting cancer, or a similar major issue that required drastic intervention. I seriously doubt that you would be able to find a doctor, (other than Dr. Cannell), who would agree with this, though. These are definitely uncharted waters.
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.
Ant,
I'm so sorry to hear this
- I wish you speedy healing (and I'm right with you about the wonderfulness of optimism, so let's both stay that way, too)...
Tex is right: Panadol is what we in the States call acetaminophen (famous brand here is Tylenol) and it is not an NSAID. Used to excess, it can have its own ill effects.
I also agree quite rabidly that the bisphosphonates are a highly suspect class of drugs, and can definitely upset the stomach - I am also not convinced that they bone they prevent from being lost is strong bone. Some of the broken hips seen in elderly folks like my late mother, they now believe, were not the result of a fall; rather, the hip broke and *then* the person fell. I believe it's possible (now I'm making stuff up) that those drugs increase 'performance' on a DEXA scan for bone density, but do not necessarily improve the performance of the bones themselves.
I don't know whether you're supplementing with Vitamin D, magnesium, and some of the other known bone builders - certainly MC and celiac have a negative affect on absorbing all those nutrients, so gently increasing intake may help. (Along with weight-bearing exercise... and some people are thinking this new "whole body vibration" technology may also help in a safe way, but I don't know how they're progressing in determining whether that's really worthwhile). I have seen two supplements that contain strontium and I bet more are out there: one is called Bone Strength Take Care (from New Chapter - BUT it contains Vitamin K from soy and barley grass... the b-grass "might" be OK, but but but), and the other one I'll look up again and let you know... I have found a Vitamin K that is safe (for me) from the brand Life Extension.
As for balancing the pros and cons of Entocort - if I were facing that question, I would turn to you for your experience and wisdom ;) I think it's the kind of question you have to ask again on a regular basis... even if you wind up with the same answer.
All my sympathy for the pain and discomfort, and for having a lovely sail marred, and lots of hugs as well.
Love,
Sara
I'm so sorry to hear this
- I wish you speedy healing (and I'm right with you about the wonderfulness of optimism, so let's both stay that way, too)...Tex is right: Panadol is what we in the States call acetaminophen (famous brand here is Tylenol) and it is not an NSAID. Used to excess, it can have its own ill effects.
I also agree quite rabidly that the bisphosphonates are a highly suspect class of drugs, and can definitely upset the stomach - I am also not convinced that they bone they prevent from being lost is strong bone. Some of the broken hips seen in elderly folks like my late mother, they now believe, were not the result of a fall; rather, the hip broke and *then* the person fell. I believe it's possible (now I'm making stuff up) that those drugs increase 'performance' on a DEXA scan for bone density, but do not necessarily improve the performance of the bones themselves.
I don't know whether you're supplementing with Vitamin D, magnesium, and some of the other known bone builders - certainly MC and celiac have a negative affect on absorbing all those nutrients, so gently increasing intake may help. (Along with weight-bearing exercise... and some people are thinking this new "whole body vibration" technology may also help in a safe way, but I don't know how they're progressing in determining whether that's really worthwhile). I have seen two supplements that contain strontium and I bet more are out there: one is called Bone Strength Take Care (from New Chapter - BUT it contains Vitamin K from soy and barley grass... the b-grass "might" be OK, but but but), and the other one I'll look up again and let you know... I have found a Vitamin K that is safe (for me) from the brand Life Extension.
As for balancing the pros and cons of Entocort - if I were facing that question, I would turn to you for your experience and wisdom ;) I think it's the kind of question you have to ask again on a regular basis... even if you wind up with the same answer.
All my sympathy for the pain and discomfort, and for having a lovely sail marred, and lots of hugs as well.
Love,
Sara
And, I forgot to mention, (but which you probably are already aware of), the bisphosphonates have been shown to be associated with the development of MC. 
Tex
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.
Dear Wonderful Tex and Sara,
Thanks for your support and insights.
It is 2am Hong Kong time. I will take two Panadol now to help me sleep...... and ponder the longer term issues in the next few days.
I will see a GP doc tomorrow to check out the fracture, but will not let him prescribe traditional Osteo drugs yet. I too do not like the concept of halting osteoclasts (and at the same time halting osteoblasts) just to produce an increased density score..... when what matters is the bone structure of which, I think, density is only one element. Strontium is interesting if it also stimulated the rebuilding osteoblasts.
I take between 4 and 5,000 vitamin D a day, but will check my serum level to see where it is.
I want to do another dexa at Bumrungrad Hospital Bangkok - my last one was done there one and three quarter years ago. Also at Bumrungrad there was (I am hoping I perceived this right) an open minded GP who I might feel comfortable consulting with about all this. (ok optimistic again).
Good night, ant
[/GVideo]
Thanks for your support and insights.
It is 2am Hong Kong time. I will take two Panadol now to help me sleep...... and ponder the longer term issues in the next few days.
I will see a GP doc tomorrow to check out the fracture, but will not let him prescribe traditional Osteo drugs yet. I too do not like the concept of halting osteoclasts (and at the same time halting osteoblasts) just to produce an increased density score..... when what matters is the bone structure of which, I think, density is only one element. Strontium is interesting if it also stimulated the rebuilding osteoblasts.
I take between 4 and 5,000 vitamin D a day, but will check my serum level to see where it is.
I want to do another dexa at Bumrungrad Hospital Bangkok - my last one was done there one and three quarter years ago. Also at Bumrungrad there was (I am hoping I perceived this right) an open minded GP who I might feel comfortable consulting with about all this. (ok optimistic again).
Good night, ant
[/GVideo]
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Hi Ant,
It's OK to ask for support - that's why we are here. Sorry to hear about the rib fracture - ouch! Hope it heals quickly.
Just a reminder about acetaminophem . . . . no alcohol/wine with it, especially since you might be taking larger doses for pain. That's a bad combination for your liver. I have a friend who is a dietitian in a liver transplant and she reminds me all the time not to mix the two together as she has seen people go into liver failure from doing that.
Feel better soon.
Hugs,
Mary Beth
It's OK to ask for support - that's why we are here. Sorry to hear about the rib fracture - ouch! Hope it heals quickly.
Just a reminder about acetaminophem . . . . no alcohol/wine with it, especially since you might be taking larger doses for pain. That's a bad combination for your liver. I have a friend who is a dietitian in a liver transplant and she reminds me all the time not to mix the two together as she has seen people go into liver failure from doing that.
Feel better soon.
Hugs,
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Ant
sorry to hear of your injury, especially when you were out enjoying non work time!
re the panadol, it is the only pain reliever i can tolerate, due to the GERD, i do have to take it on a Full stomach otherwise i do vomit within 10 mins of taking it
In Oz there is a prescribable panadol that is for osteo. it reduces inflammation and helps with pain, you do need the script for it.
http://www.gsk.com.au/products_consumer ... px?view=90
no gluten, lactose or sugar
I was going to discuss this option with my new GI specialist this week as a safe treatment for the times i do have flares with considerable pain and inflammation
Do you avoid soy? i read an article the other week that ingesting soy products reduces your Vit D and B12 levels
I am trying to find the link for the article but cant find it
sorry to hear of your injury, especially when you were out enjoying non work time!
re the panadol, it is the only pain reliever i can tolerate, due to the GERD, i do have to take it on a Full stomach otherwise i do vomit within 10 mins of taking it
In Oz there is a prescribable panadol that is for osteo. it reduces inflammation and helps with pain, you do need the script for it.
http://www.gsk.com.au/products_consumer ... px?view=90
no gluten, lactose or sugar
I was going to discuss this option with my new GI specialist this week as a safe treatment for the times i do have flares with considerable pain and inflammation
Do you avoid soy? i read an article the other week that ingesting soy products reduces your Vit D and B12 levels
I am trying to find the link for the article but cant find it
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Dear Ant,
So sorry you got hurt. I was going to tell you that Panadol is safe, but others already have.
I took Fosamax for osteoporosis for 5 years--before I understood how it worked, and before I had MC. I quit because the more I read about it, the more it scared me. I didn't have any stomach trouble while taking it, but learning that it prevents bone from breaking down and new bone from building made me suspicious that it was doing any good. So I quit and upped my vitamin D and exercise.
My son is in Bangkok now. They live in the area called Bangna. They are having some orientation classes, on Thai culture, and hopefully on language. The first week of orientation includes spouses; next week Katie will have teacher orientation.
Love,
Martha
So sorry you got hurt. I was going to tell you that Panadol is safe, but others already have.
I took Fosamax for osteoporosis for 5 years--before I understood how it worked, and before I had MC. I quit because the more I read about it, the more it scared me. I didn't have any stomach trouble while taking it, but learning that it prevents bone from breaking down and new bone from building made me suspicious that it was doing any good. So I quit and upped my vitamin D and exercise.
My son is in Bangkok now. They live in the area called Bangna. They are having some orientation classes, on Thai culture, and hopefully on language. The first week of orientation includes spouses; next week Katie will have teacher orientation.
Love,
Martha
Martha
I am so sorry that you got hurt while sailing, one of my favorite things in the world.
No, I won't take the osteoporosis drugs any longer.
While you were AWOL
, I think I may have found the reason that I was able to go off my cholesterol meds. That reason is magnesium. I believe that I read that it also helps with osteoporosis. I will find the link.
No, I won't take the osteoporosis drugs any longer.
While you were AWOL
, I think I may have found the reason that I was able to go off my cholesterol meds. That reason is magnesium. I believe that I read that it also helps with osteoporosis. I will find the link.DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Signs & Symptoms of Magnesium Deficiency:
Poor immune function
Bone Loss
Muscle pain and muscle twitching
Depression
High Blood Pressure
Increase cholesterol
Hypoglycemia or other blood sugar problems
Fatigue
Thyroid Disease
Bone Loss
Muscle pain and muscle twitching
Depression
High Blood Pressure
Increase cholesterol
Hypoglycemia or other blood sugar problems
Fatigue
Thyroid Disease
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Ant -
I'm among the folks using magnesium topically. There are commercial 'magnesium oil' products or you can make your own (much cheaper). Oral magnesium can have a laxative effect (shudder). I buy nigari flakes, which are used to make tofu - it's just magnesium chloride, from sea water, and you dissolve the flakes in water and spray or splash it on. It's oily/salty - you can either shower after about 20-30 minutes, or leave it on.
It has many health benefits, as Joan has pointed out. Hope you got some good, pain-free rest!
Love,
Sara
I'm among the folks using magnesium topically. There are commercial 'magnesium oil' products or you can make your own (much cheaper). Oral magnesium can have a laxative effect (shudder). I buy nigari flakes, which are used to make tofu - it's just magnesium chloride, from sea water, and you dissolve the flakes in water and spray or splash it on. It's oily/salty - you can either shower after about 20-30 minutes, or leave it on.
It has many health benefits, as Joan has pointed out. Hope you got some good, pain-free rest!
Love,
Sara
I just wanted to mention that I was using magnesium topically but started taking it orally. The only ones I could find without all the "stuff" were 500 mg.
I started out with a half of one of those most days and didn't have any problems. I'm now taking one whole one every other day and still not having issues. I must be healing!
I started out with a half of one of those most days and didn't have any problems. I'm now taking one whole one every other day and still not having issues. I must be healing!
Ant,
I'm so sorry that you've broken more ribs. That's got to be very painful. I know you were walking to strengthen your bones, but walking probably has a minimal impact on ribs.
I am in the same situation as you, though I haven't broken any bones (yet). I stopped taking Fosamax over a year ago. My osteoporosis doctor told me that he didn't have a problem with me taking strontium, but he couldn't vouch for it because there haven't been any studies on it. When I researched it, I found studies in other countries, but not in the U.S. It is used quite frequently for osteoporosis in Europe. I'm pretty sure that the reason no studies exist in the U.S. is because it is an OTC medication, and the pharmaceuticals (who sponsor most studies) wouldn't make any money off of it. I tried taking it, but it gave me headaches, so I discontinued. Here is a board which discusses it: http://www.healthboards.com/boards/foru ... y.php?f=96
I don't think we really know what effect Entocort has on our osteoporosis. When I told my doctor that Entocort wasn't a systemic steroid, he said it didn't matter. I don't know if he was right or not. I think that you probably are no longer suffering from malabsorption after being GF this long. I don't think I am either.
You and I both had osteoporosis before we began taking Entocort. Entocort might not be helping our osteoporosis, but it certainly didn't cause it.
If I were you, I would experiment with strontium. Many on the board above swear by it. If you don't have any side effects like I did, then you have a cheap and effective solution. It works in a different manner than bisphosphonates do and actually rebuilds the bone.
Gloria
I'm so sorry that you've broken more ribs. That's got to be very painful. I know you were walking to strengthen your bones, but walking probably has a minimal impact on ribs.
I am in the same situation as you, though I haven't broken any bones (yet). I stopped taking Fosamax over a year ago. My osteoporosis doctor told me that he didn't have a problem with me taking strontium, but he couldn't vouch for it because there haven't been any studies on it. When I researched it, I found studies in other countries, but not in the U.S. It is used quite frequently for osteoporosis in Europe. I'm pretty sure that the reason no studies exist in the U.S. is because it is an OTC medication, and the pharmaceuticals (who sponsor most studies) wouldn't make any money off of it. I tried taking it, but it gave me headaches, so I discontinued. Here is a board which discusses it: http://www.healthboards.com/boards/foru ... y.php?f=96
I don't think we really know what effect Entocort has on our osteoporosis. When I told my doctor that Entocort wasn't a systemic steroid, he said it didn't matter. I don't know if he was right or not. I think that you probably are no longer suffering from malabsorption after being GF this long. I don't think I am either.
You and I both had osteoporosis before we began taking Entocort. Entocort might not be helping our osteoporosis, but it certainly didn't cause it.
If I were you, I would experiment with strontium. Many on the board above swear by it. If you don't have any side effects like I did, then you have a cheap and effective solution. It works in a different manner than bisphosphonates do and actually rebuilds the bone.
Gloria
You never know what you can do until you have to do it.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi there Ant, ouch fractured ribs do hurt.. I have had a couple of them over the years. Your correct to suspect osteoporosis and should probaly ask for a bone density scan to determine where you are at. It's amazing how just about every move you make can make a rib fracure hurt.. Including breathing.
I don't know if you have tried it yet but putting a wrap around you to pull the ribcage in does help ease the pain. Initially it's a little uncomfortable but then it settles down. I found the wrap allowed me to do a little more without hurting near as much
I do hope you feel better soon.
Joe
PS. Nurse Nestle sends a few dozen tail wags
I don't know if you have tried it yet but putting a wrap around you to pull the ribcage in does help ease the pain. Initially it's a little uncomfortable but then it settles down. I found the wrap allowed me to do a little more without hurting near as much
I do hope you feel better soon.
Joe
PS. Nurse Nestle sends a few dozen tail wags
Joe