Elissa
apologies for not remembering if you have mentioned it previously - have you tried cholestyramine (questran) quite a few here have had good results with this. PBS cost is only $38.50 for the 50 sachets.
I used it for the first few months when I was diagnosed and it worked really well.
Today I started Budesonide
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Hi Gabes & Linda -
No I haven't tried Questran. In fact, it has never been offered to me. I really need to fire my Gastroenterologist. He's stuck on Prednisone, Sulphasalazine and Mesalazine as the ONLY treatment options. Apart from high dose prednisone, the other treatments haven't helped. I put myself on Pepto Bismol years ago for the 8 week course when I was living in the UK. It put me into remission but I relapsed as soon as finished.
As soon as I find another GI doctor who is a little more open to treatment options (like yours), I will be asking them to prescribe Questran and/or Budesonide/Budenofalk. In the mean time I'll shop around for the Budenofalk at a cheaper price and perhaps start again with this elimination diet....sigh! I guess having done it before, I have a bit of a head start but doesn't make it that much easier. A shame you haven't noticed a reduction in symptoms yet with the budesonide but I guess it's still early days yet or as you say an unidentified food intolerance is keeping the LC active. Even on high dose prednisone, where my symptoms were pretty much controlled, egg (my strongest food intolerance) would always induce symptoms. Actually, that's how I discovered it was a food intolerance.
I'll be interested in your progress. And I'll keep you posted about how I go :)
Cheers, Elissa
No I haven't tried Questran. In fact, it has never been offered to me. I really need to fire my Gastroenterologist. He's stuck on Prednisone, Sulphasalazine and Mesalazine as the ONLY treatment options. Apart from high dose prednisone, the other treatments haven't helped. I put myself on Pepto Bismol years ago for the 8 week course when I was living in the UK. It put me into remission but I relapsed as soon as finished.
As soon as I find another GI doctor who is a little more open to treatment options (like yours), I will be asking them to prescribe Questran and/or Budesonide/Budenofalk. In the mean time I'll shop around for the Budenofalk at a cheaper price and perhaps start again with this elimination diet....sigh! I guess having done it before, I have a bit of a head start but doesn't make it that much easier. A shame you haven't noticed a reduction in symptoms yet with the budesonide but I guess it's still early days yet or as you say an unidentified food intolerance is keeping the LC active. Even on high dose prednisone, where my symptoms were pretty much controlled, egg (my strongest food intolerance) would always induce symptoms. Actually, that's how I discovered it was a food intolerance.
I'll be interested in your progress. And I'll keep you posted about how I go :)
Cheers, Elissa
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Gabes-Apg
- Emperor Penguin
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Elissa
this updated treatment guideline may help to get the script for questran and/or budesonide
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
and here is the recent discussion about the guidelines
http://www.perskyfarms.com/phpBB2/viewt ... guidelines
Good Luck!
this updated treatment guideline may help to get the script for questran and/or budesonide
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
and here is the recent discussion about the guidelines
http://www.perskyfarms.com/phpBB2/viewt ... guidelines
Good Luck!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Gabes and Elissa
I did try Questran but it was only for one week at one sachet day. What dose were you taking Gabes? Maybe I need to try this again at a later time though I hated the texture of the drink. I am on concession so at least Questran only cost about $6 for two huge boxes.
My GI doctor is really nice so I feel blessed to have a good doctor. I probably won't talk diet over with him though because he said that diet doesn't make any difference to this disease. That is okay because I can talk about diet on this site with people that are going through the same thing as I am.
Funny you should say about egg being your strongest food intolerance Elissa. I have just had a bit of a conversation with Tex and Gabes about egg. The naturopath put me on an elimination but she didn't cut out egg. I have given up gluten, dairy and kept my food low fodmap but still continued to eat egg. It now seems pretty logical for me to stop eating egg (at least for awhile
)
I did try Questran but it was only for one week at one sachet day. What dose were you taking Gabes? Maybe I need to try this again at a later time though I hated the texture of the drink. I am on concession so at least Questran only cost about $6 for two huge boxes.
My GI doctor is really nice so I feel blessed to have a good doctor. I probably won't talk diet over with him though because he said that diet doesn't make any difference to this disease. That is okay because I can talk about diet on this site with people that are going through the same thing as I am.
Funny you should say about egg being your strongest food intolerance Elissa. I have just had a bit of a conversation with Tex and Gabes about egg. The naturopath put me on an elimination but she didn't cut out egg. I have given up gluten, dairy and kept my food low fodmap but still continued to eat egg. It now seems pretty logical for me to stop eating egg (at least for awhile
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Gabes-Apg
- Emperor Penguin
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Linda
I started on two satchets and went down to one satchet fairly quickly as from onset I went back to a bland elimination diet eating plan based on my learnings from this site.
I was only on it for a few months as it started to make me constipated. (that was 6 years ago)
based on my learnings from various discussions here - any medication has limited scope to work if the person is having too many things causing inflammation / major nutrient deficiencies such as Vit D3 and magnesium, especially where MC is not necessarily the root cause of health issues moreso where it is a symptom of other health issues.
I started on two satchets and went down to one satchet fairly quickly as from onset I went back to a bland elimination diet eating plan based on my learnings from this site.
I was only on it for a few months as it started to make me constipated. (that was 6 years ago)
based on my learnings from various discussions here - any medication has limited scope to work if the person is having too many things causing inflammation / major nutrient deficiencies such as Vit D3 and magnesium, especially where MC is not necessarily the root cause of health issues moreso where it is a symptom of other health issues.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Linda,
I don't recall whether you are taking a vitamin D supplement. According to my own research (based on published medical research, but not yet generally recognized by the medical community), corticosteroids suppress inflammation by exploiting the ability of the active form of vitamin D to suppress mast cell propagation and activation. If my theory is correct then anyone who does not have sufficient vitamin D in their bloodstream, or anyone whose ability to convert the inactive form of vitamin D into the active form is compromised, will have limited success with budesonide. IOW, higher vitamin D levels should make budesonide more effective at suppressing inflammation.
But I repeat, this is my own theory, not proven by rigid, random medical trials.
Tex
I don't recall whether you are taking a vitamin D supplement. According to my own research (based on published medical research, but not yet generally recognized by the medical community), corticosteroids suppress inflammation by exploiting the ability of the active form of vitamin D to suppress mast cell propagation and activation. If my theory is correct then anyone who does not have sufficient vitamin D in their bloodstream, or anyone whose ability to convert the inactive form of vitamin D into the active form is compromised, will have limited success with budesonide. IOW, higher vitamin D levels should make budesonide more effective at suppressing inflammation.
But I repeat, this is my own theory, not proven by rigid, random medical trials.
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.
Yes Tex we have had a conversation about vitamin D and based on that conversation I now take at least 5000IU a day. I will probably take a bit more as we start to get into autumn months but at the moment our weather is very warm and very sunny. I am also using topical magnesium oil.
Gabes you mentioned the root cause of health issues. My health issues began days after I took an antibiotic for a virus. I wasn't eating at the time and I am sure that the antibiotic just killed all the good bacteria. I can't see that I suddenly acquired MC. It must have been a progression. Sometimes it feels like I will never get back what I lost no matter what I do. Still we have to keep on hoping and doing whatever we can
Gabes you mentioned the root cause of health issues. My health issues began days after I took an antibiotic for a virus. I wasn't eating at the time and I am sure that the antibiotic just killed all the good bacteria. I can't see that I suddenly acquired MC. It must have been a progression. Sometimes it feels like I will never get back what I lost no matter what I do. Still we have to keep on hoping and doing whatever we can
Thank you so much for this link Gabes. I have printed it off and will present it to my GI Dr.Gabes-Apg wrote:Elissa
this updated treatment guideline may help to get the script for questran and/or budesonide
http://www.gastrojournal.org/article/S0 ... 1625-X/pdf
and here is the recent discussion about the guidelines
http://www.perskyfarms.com/phpBB2/viewt ... guidelines
Good Luck!
I'm looking forward the prospect of having new drug/s to try that may just help in relieving symptoms ;)
Of course I'd rather not take drugs at all but until I can get full control of it through diet I feel I need something to reduce the symptoms/inflammation right now. Thanks again.
Cheers, Elissa.
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Gabes-Apg
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Your Welcome Elissa
if something like the questran works and gives you 'quality of life' while you sort out the diet, that is not a bad thing
and it is a good 'fall back/safety net' if situations change, ie increased stress in your life or you have to travel and dont want to risk accidents.
Good Luck and let us know how you go.
Linda
do you still have the questran?
if something like the questran works and gives you 'quality of life' while you sort out the diet, that is not a bad thing
and it is a good 'fall back/safety net' if situations change, ie increased stress in your life or you have to travel and dont want to risk accidents.
Good Luck and let us know how you go.
Linda
do you still have the questran?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
As Jari suggested, most people see benefits within a week or 2 (or less). It doesn't work for everyone. Is your vitamin D level adequate? Or are you taking a good dose of vitamin D daily? According to my research, budesonide works by exploiting vitamin D to suppress inflammation. If I'm correct, then that implies that if vitamin D is low, budesonide may not have much of an effect.Linda wrote:I have now been on Budesonide for a month and really haven't noticed much improvement. Nothing has normalized. Does anyone know if this means that the medication is not working for me?
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.
That may or may not be enough vitamin D to get an optimal response, but unless you were severely depleted before you started taking the supplement, it should certainly be enough to bring some sort of beneficial response from budesonide within a week or 2 (provided that you are following a strict GF and casein-free diet). So the problem may simply be that the drug just isn't effective for you. It doesn't work for everyone, unfortunately.
One possibility is another AI disease preventing remission from MC. Do you have any other AI disease diagnoses?
Tex
One possibility is another AI disease preventing remission from MC. Do you have any other AI disease diagnoses?
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.