Brief history...budesonide for two years, stopped in August because of Adrenal Fatigue (Low DHEA) and because it wasn't really working (or so I thought-still had diarrhea). Once I went off though, I could only eat cauliflower and turnips. I reacted to basically everything, so I conceded to repeat colonoscopy and possibly Imuran.
Colonoscopy showed continued Lymphocytic Colitis but surprisingly no mast cells...I have a significant histamine response, and recent tests showed an overabundance of histidine in my system (can't break it down and get it out of my system I guess). Doc has started the process to start Imuran, but there's a catch. I went on Entocort after the colonoscopy bc I was back to watery diarrhea 5-7x a day....and this time it is working. I don't know what the 3 months break did to make it work again.
Insanity is doing the same thing over and over again expecting different results, sooooo, do I keep up the budesonide, thinking it may do something different this time, or is it time to try Imuran? I'd love to know what you would do! Susie
Advice, Opinions, and Musings...Entocort, Imuran, Adrenals
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Susie,
I agree with Joan. Never look a gift horse in the mouth. While the long-term outcome might eventually turn out to be similar, at least this buys you some time, and gives both your digestive system and your immune system a much-needed break. That has to be a good thing. And if the Entocort should continue to give control (especially if it will do so at a reduced dosage) over the long-term, that is a much more practical (safer) choice than using an immune system suppressant, and hoping that nothing serious develops.
Inappropriate mast cell degranulation with a normal mast cell count is just as bad as an elevated mast cell count, as far as the outcome is concerned. As you know, that's defined as Mast Cell Activation Disorder, (MCAD). It sounds as though your DAO level may be low. Magnesium deficiency can contribute to that problem, and many/most of us do tend to be low on magnesium. Have you already tried histame (together with one or more antihistamines) to try to deal with the residual histamine? I'm guessing that you have, but my memory is not good enough to recall whether or not you have.
http://histamino.wordpress.com/tag/daosin/
And always remember that insanity is only one step away from genius. Personally, unless I lived in a plexiglass bubble, I would have an extremely tough job on my hands if I tried to persuade myself to allow the suppression of my immune system. Suppressing the immune system is necessary in the case of organ transplants, but short of that, it's tantamount to stepping onto a battleground filled with combatants of every type imaginable, and they all have powerful weapons, while you have none.
You may eventually decide to go that route, but if I were in that situation I would explore every possible avenue first, before I agreed to that plan. Doctors are always quick to recommend that type of treatment, because it's easy (for them), and it has a long history of success (success by their definition), but they always downplay the risks, because they typically try to ignore the negative side of their treatment recommendations. Doctors don't like to dwell on the fact that so many of the drugs that they prescribe are (or can be) iatrogenic. And I can't blame them, because I certainly wouldn't want to think about that, either.
Anyway, those are some of my thoughts, for what they're worth.
Tex
I agree with Joan. Never look a gift horse in the mouth. While the long-term outcome might eventually turn out to be similar, at least this buys you some time, and gives both your digestive system and your immune system a much-needed break. That has to be a good thing. And if the Entocort should continue to give control (especially if it will do so at a reduced dosage) over the long-term, that is a much more practical (safer) choice than using an immune system suppressant, and hoping that nothing serious develops.
Inappropriate mast cell degranulation with a normal mast cell count is just as bad as an elevated mast cell count, as far as the outcome is concerned. As you know, that's defined as Mast Cell Activation Disorder, (MCAD). It sounds as though your DAO level may be low. Magnesium deficiency can contribute to that problem, and many/most of us do tend to be low on magnesium. Have you already tried histame (together with one or more antihistamines) to try to deal with the residual histamine? I'm guessing that you have, but my memory is not good enough to recall whether or not you have.
http://histamino.wordpress.com/tag/daosin/
And always remember that insanity is only one step away from genius. Personally, unless I lived in a plexiglass bubble, I would have an extremely tough job on my hands if I tried to persuade myself to allow the suppression of my immune system. Suppressing the immune system is necessary in the case of organ transplants, but short of that, it's tantamount to stepping onto a battleground filled with combatants of every type imaginable, and they all have powerful weapons, while you have none.
You may eventually decide to go that route, but if I were in that situation I would explore every possible avenue first, before I agreed to that plan. Doctors are always quick to recommend that type of treatment, because it's easy (for them), and it has a long history of success (success by their definition), but they always downplay the risks, because they typically try to ignore the negative side of their treatment recommendations. Doctors don't like to dwell on the fact that so many of the drugs that they prescribe are (or can be) iatrogenic. And I can't blame them, because I certainly wouldn't want to think about that, either.
Anyway, those are some of my thoughts, for what they're worth.
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...
In regards to long term use of Entocort, which is what my MD has recently suggested for me, do you think it is a relatively safe choice for long term? The risks make me nervous. I am still working diligently on my diet/supplements and I have been able to hold again on 3mg. That being said - I am nervous about the adrenal issues(my TPO are already somewhat elevated/DHEA low normal/Cortisol Spit test was low before Colitis/thyroid nodule(just checked again), plus bone loss, and the possible increased risk of infections and/or cancer. Obviously the alternative of not living a life is not a good one either and I am remembering to count my blessings that something is working at all. I see some of you that have gotten off the drugs and are doing well beyond the 60 days and some that never used a drug doing well, so I see that hope exists but(that annoying anxiety but) I still struggle with the anxiety of it all. I have let go of seeing my MD's for awhile and looking for answers or more things to finally just accept what is(I am still working on this), it has taken a really long time for me to battle through the deep depression. I have actually not been craving the foods as much or as frustrated with not being able to eat but I do miss going out with my friends to dinner without the stress of thinking about what to eat or if I will be able to enjoy anything on the menu at all. I miss red wine and still looking for something that I can enjoy in the social arena.. Anyway back to the question regarding the Entocort any reassuring comments. (I have been GF/DF/SF(this one is tricky)/Eggs excluding baked goods sometimes.) I consume limited gluten free grains.
In regards to long term use of Entocort, which is what my MD has recently suggested for me, do you think it is a relatively safe choice for long term? The risks make me nervous. I am still working diligently on my diet/supplements and I have been able to hold again on 3mg. That being said - I am nervous about the adrenal issues(my TPO are already somewhat elevated/DHEA low normal/Cortisol Spit test was low before Colitis/thyroid nodule(just checked again), plus bone loss, and the possible increased risk of infections and/or cancer. Obviously the alternative of not living a life is not a good one either and I am remembering to count my blessings that something is working at all. I see some of you that have gotten off the drugs and are doing well beyond the 60 days and some that never used a drug doing well, so I see that hope exists but(that annoying anxiety but) I still struggle with the anxiety of it all. I have let go of seeing my MD's for awhile and looking for answers or more things to finally just accept what is(I am still working on this), it has taken a really long time for me to battle through the deep depression. I have actually not been craving the foods as much or as frustrated with not being able to eat but I do miss going out with my friends to dinner without the stress of thinking about what to eat or if I will be able to enjoy anything on the menu at all. I miss red wine and still looking for something that I can enjoy in the social arena.. Anyway back to the question regarding the Entocort any reassuring comments. (I have been GF/DF/SF(this one is tricky)/Eggs excluding baked goods sometimes.) I consume limited gluten free grains.
Thumbs,
The primary causes of bone loss in the general population of most developed countries are untreated gluten sensitivity, inadequate vitamin D level, and inadequate magnesium level, in that order (IMO). Most of the bone loss that you have suffered almost surely occurred before you changed your diet to avoid gluten.
By avoiding gluten, maintaining adequate vitamin D and magnesium levels, and taking only as much budesonide as you need in order to maintain remission, I predict that your future rate of bone loss will be far less than your previous rate (before you made all these changes). Anecdotal evidence (based on the experience of other members here who have been using Entocort for years) suggests that 3 mg or less of budesonide per day is not a significant threat to future bone density, especially if you never stop taking Entocort and then restart again. Research shows that stopping and restarting treatment with Entocort increases the risk of bone damage, but the risk is still much lower than the risk associated with prednisone or any other corticosteroid, for example.
And as far as the risk of developing other diseases is concerned, the greatest risk is with untreated symptoms. Controlling the symptoms of MC effectively lowers our risk of developing other diseases, including other autoimmune diseases, even when a corticosteroid is part of our treatment program (as long as a minimal dose of a corticosteroid is used). In view of all this, IMO, controlling the disease by whatever means necessary is the primary consideration. After that, the secondary goal should be to use methods that minimize the use of medications (whenever possible).
At least that's the way I see it, but as you know, I'm not a doctor.
Tex
The primary causes of bone loss in the general population of most developed countries are untreated gluten sensitivity, inadequate vitamin D level, and inadequate magnesium level, in that order (IMO). Most of the bone loss that you have suffered almost surely occurred before you changed your diet to avoid gluten.
By avoiding gluten, maintaining adequate vitamin D and magnesium levels, and taking only as much budesonide as you need in order to maintain remission, I predict that your future rate of bone loss will be far less than your previous rate (before you made all these changes). Anecdotal evidence (based on the experience of other members here who have been using Entocort for years) suggests that 3 mg or less of budesonide per day is not a significant threat to future bone density, especially if you never stop taking Entocort and then restart again. Research shows that stopping and restarting treatment with Entocort increases the risk of bone damage, but the risk is still much lower than the risk associated with prednisone or any other corticosteroid, for example.
And as far as the risk of developing other diseases is concerned, the greatest risk is with untreated symptoms. Controlling the symptoms of MC effectively lowers our risk of developing other diseases, including other autoimmune diseases, even when a corticosteroid is part of our treatment program (as long as a minimal dose of a corticosteroid is used). In view of all this, IMO, controlling the disease by whatever means necessary is the primary consideration. After that, the secondary goal should be to use methods that minimize the use of medications (whenever possible).
At least that's the way I see it, but as you know, I'm not a doctor.
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.
Question on magnesium.. What one is safe for MC? I take 5000 D and I have CALM magnesium at home but have not tried it, do you think it is safe? My original Md had me take Entocort but had me stop it at 6 weeks as he wasn't sure i was diagnosed properly as i was too young for MC so I have restarted it once.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Susie,
There is no easy answer per say.
Whatever treatment protocol you go with, if you do change, give it 8-12 weeks before you decide if it is working. (If there are major side effects then stop)
It takes time for the body, the cells, the digestion flora etc, to adjust to change....
It takes a bit to adjust, and then healing will occur.
I hope you find what will work for you.
There is no easy answer per say.
Whatever treatment protocol you go with, if you do change, give it 8-12 weeks before you decide if it is working. (If there are major side effects then stop)
It takes time for the body, the cells, the digestion flora etc, to adjust to change....
It takes a bit to adjust, and then healing will occur.
I hope you find what will work for you.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thumbs,
That product is magnesium citrate, which is what I usually take (I take tablets though, not powder), but beware that it's a form of magnesium that's more likely to cause D than some of the other forms. And since magnesium citrate is a laxative (at certain dosage levels), it's a common problem for many members here, especially if they take a higher dose.
The form that's least likely to cause D is claimed to be magnesium glycinate (and magnesium glycinate is significantly more expensive than magnesium citrate). I notice that when I take magnesium glycinate, I have to take at least twice as much, in order to get the same effectiveness as magnesium citrate. I'm lucky, and 400 mg of magnesium citrate does not cause me to have D. The RDA for women is 320 mg, but unless you are having severe leg and/or foot cramps, you may not need that much. 200 or 250 mg (or possibly less) might be plenty. Of course, we don't absorb all of it anyway, so it's difficult to say how much we actually absorb, especially since it varies by the form of the compound.
Here's some info on the product you have:
http://breakingmuscle.com/supplements/p ... supplement
Your dose of vitamin D should be fine.
Tex
That product is magnesium citrate, which is what I usually take (I take tablets though, not powder), but beware that it's a form of magnesium that's more likely to cause D than some of the other forms. And since magnesium citrate is a laxative (at certain dosage levels), it's a common problem for many members here, especially if they take a higher dose.
The form that's least likely to cause D is claimed to be magnesium glycinate (and magnesium glycinate is significantly more expensive than magnesium citrate). I notice that when I take magnesium glycinate, I have to take at least twice as much, in order to get the same effectiveness as magnesium citrate. I'm lucky, and 400 mg of magnesium citrate does not cause me to have D. The RDA for women is 320 mg, but unless you are having severe leg and/or foot cramps, you may not need that much. 200 or 250 mg (or possibly less) might be plenty.
Of course, we don't absorb all of it anyway, so it's difficult to say how much we actually absorb, especially since it varies by the form of the compound.Here's some info on the product you have:
http://breakingmuscle.com/supplements/p ... supplement
Your dose of vitamin D should be fine.
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.
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Tex as steroids significantly inhibit any healing in the affected tissues throughout the body would recommending steroids for long term use be a good idea? Certainly figuring out what foods to avoid is key, but when that does not provide relief the choices do become more of a challenge. Given that healing is the goal for long term management and eventual remission of MC, I would think that long term use of steroids would be counter productive and end up perpetuating the problem.
Joe
Joe
Joe
Yes, that's certainly true, if one were to just naively take the full dose, regardless of whether or not a full dose (or any dose) was needed. But we have to keep in mind that on this board we strive to wean the dosage down to the bare minimum, which minimizes the healing issue with corticosteroids. And that also minimizes the risk of loss of bone density.Joe wrote:I would think that long term use of steroids would be counter productive and end up perpetuating the problem.
And most importantly, remember that no one is going to use a corticosteroid on a long-term basis unless they absolutely can't achieve control by diet alone, in the first place. And if they can't achieve control by diet alone, then the symptoms (and the inflammation problem), are going to be perpetuated unless a medication is used to supplement the diet changes.
So they might as well take a minimum dose (I'm talking about budesonide here, not prednisolone), and control their symptoms, because uncontrolled MC symptoms increase the risk of developing additional autoimmune type diseases. And a minimum dose of budesonide appears to carry the lowest risk of Draconian side effects, when used on a long-term basis. To date, no one here has experienced any problems from using it that way.
The 5-ASA medications can also be used (in cases where they are effective), but the skeleton in their closet is that long-term use of mesalamine can cause pancreatitis in some cases. We have several members who developed that problem after using mesalamine for a while.
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.
entocort
Entocort worked for me but caused severe anxiety, to the point of begging for an injection of lorazepam from my pcp. Interesting how different people tolerate different things. The long term use of steroids seems to cause problems for most though it seems.
Good luck!
Good luck!
Seren