I haven't posted in a while so I thought I'd give a brief update. After LC diagnosis, the MD that did my colonoscopy put me on two Lialda daily and two Entocort daily. After a month, I followed up with my original GI doc who told me to quit Lialda and go with three entocort daily. I have now been on 9mg of entocort daily for about 10 weeks and my symptoms have still not resolved. My LC has never been THAT bad. I can treat it effectively with OTC pepto or loperamide. What concerns me is that despite having taken the most effective treatment for MC for nearly three months now, I still can't be 100% confident that I will not get that typical abdominal cramp and have to hit the head. I discussed with my GI doc that I didn't feel that I was responding well to treatment and he said that I was and to continue taking 9mg daily. That was a month ago. For those who did respond to entocort, did your symptoms completely resolve while taking it?
In addition, the best response I have had while on the entocort is that I went approximately a week without having to use supplementary meds such as loperamide or pepto. I would still get some cramping and have one normal bowel movement. However, after that week, I have still had to supplement with OTC meds every few days.
Update, ineffective treatment
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Bearcat,
I'm sorry to see that your treatment isn't working. Most members here typically respond to budesonide within approximately 2 weeks (if it's going to help). Occasionally it takes a month or longer.
Are you taking vitamin D, or do you know that your 25(OH)D level is at least above mid-range? IBDs deplete vitamin D, and corticosteroids deplete vitamin D. Because of that, some of us require a significant level of vitamin D supplementation in order to keep our immune system functioning properly while MC is active.
The reason I bring this up is because according to my research, corticosteroids suppress inflammation by expressing vitamin D receptors. IOW, it appears that corticosteroids exploit the ability of the active form of vitamin D to suppress mast cell propagation and activation. That implies that if vitamin D is insufficient, or if one's body's ability to convert vitamin D into the active form is compromised, then corticosteroid treatment may be ineffective. You can find more details and medical research references in my book on Vitamin D and Autoimmune Disease, if you are interested.
In my experience, vitamin D levels can be depleted surprisingly quickly. The fact that you got about a week of response from budesonide suggests that at that point your vitamin D availability began to fizzle out.
Remember that this is just my theory, and no researchers have actually done any RCTs that would verify or refute it, but the background supporting research is available, and it's the most logical scenario I've seen for explaining why corticosteroids do not work for some people. Vitamin D is the primary fuel for the immune system, and without it, the immune system is pretty much dead in the water.
At least that's the way I see it.
Tex
I'm sorry to see that your treatment isn't working. Most members here typically respond to budesonide within approximately 2 weeks (if it's going to help). Occasionally it takes a month or longer.
Are you taking vitamin D, or do you know that your 25(OH)D level is at least above mid-range? IBDs deplete vitamin D, and corticosteroids deplete vitamin D. Because of that, some of us require a significant level of vitamin D supplementation in order to keep our immune system functioning properly while MC is active.
The reason I bring this up is because according to my research, corticosteroids suppress inflammation by expressing vitamin D receptors. IOW, it appears that corticosteroids exploit the ability of the active form of vitamin D to suppress mast cell propagation and activation. That implies that if vitamin D is insufficient, or if one's body's ability to convert vitamin D into the active form is compromised, then corticosteroid treatment may be ineffective. You can find more details and medical research references in my book on Vitamin D and Autoimmune Disease, if you are interested.
In my experience, vitamin D levels can be depleted surprisingly quickly. The fact that you got about a week of response from budesonide suggests that at that point your vitamin D availability began to fizzle out.
Remember that this is just my theory, and no researchers have actually done any RCTs that would verify or refute it, but the background supporting research is available, and it's the most logical scenario I've seen for explaining why corticosteroids do not work for some people. Vitamin D is the primary fuel for the immune system, and without it, the immune system is pretty much dead in the water.
At least that's the way I see it.
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,
My Vit D levels were *** edit *** under 12 the last time I checked. My physician put me on 50,000 IU of D3 once weekly and I've been taking 4,000 units daily on top of that. That was several months ago and I eventually ran out of the RX. I'm assuming my Vit D levels have dropped back down again. However, I started taking the 50,000 units again about a month ago and even since then I've continued to have issues. On a side note, I have had my doctor put me on Alinia for three days. My symptoms completely resolved for about a week again (this was before I started Entocort).
I feel like there should be some other underlying cause for the ineffectiveness of Entocort. Once the inflammation has been addressed, I'm still having cramps and some loose BMs. It doesn't make a whole lot of sense that a drug, that is >80% effective is still not resolving symptoms after 12 weeks. My doctor wrote an RX for Xifaxan but it requires a prior authorization. I'm holding off on that for the time being.
My Vit D levels were *** edit *** under 12 the last time I checked. My physician put me on 50,000 IU of D3 once weekly and I've been taking 4,000 units daily on top of that. That was several months ago and I eventually ran out of the RX. I'm assuming my Vit D levels have dropped back down again. However, I started taking the 50,000 units again about a month ago and even since then I've continued to have issues. On a side note, I have had my doctor put me on Alinia for three days. My symptoms completely resolved for about a week again (this was before I started Entocort).
I feel like there should be some other underlying cause for the ineffectiveness of Entocort. Once the inflammation has been addressed, I'm still having cramps and some loose BMs. It doesn't make a whole lot of sense that a drug, that is >80% effective is still not resolving symptoms after 12 weeks. My doctor wrote an RX for Xifaxan but it requires a prior authorization. I'm holding off on that for the time being.
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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
I think you are limiting the ability for the med to work if you are having highly inflammatory foods like gluten, dairy, fibre, etc.
It can take months for the gluten antibodies to abate and for inflammation to reduce.
And if you were having fruit, high fibre vegetables, during this period, it would also limit the success of being gluten free.
Majority of the people here, regardless of medication regime, have had to eliminate major trigger ingredients to see any level of improvement.
It can take months for the gluten antibodies to abate and for inflammation to reduce.
And if you were having fruit, high fibre vegetables, during this period, it would also limit the success of being gluten free.
Majority of the people here, regardless of medication regime, have had to eliminate major trigger ingredients to see any level of improvement.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Sheila
- Rockhopper Penguin
- Posts: 1150
- Joined: Wed May 18, 2011 5:10 am
- Location: Palm Beach Gardens, Fl
I agree with Gabes. Entocort doesn't work if you haven't eliminated food triggers. You need to determine what foods are problematic and eliminate them. You can do Enterolab testing to determine food intolerances or begin an elimination diet.
Even with a GF, DF, SF and EF diet, it took me about 2 years to be able to wean off Entocort and maintain normal BMs. This disease is not simple or easy. If you don't find out what triggered your symptoms, you won't be able to eliminate those symptoms.
Sheila W
Even with a GF, DF, SF and EF diet, it took me about 2 years to be able to wean off Entocort and maintain normal BMs. This disease is not simple or easy. If you don't find out what triggered your symptoms, you won't be able to eliminate those symptoms.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Bearcat,
If you are using prescription vitamin D, you are handicapping yourself. Use OTC vitamin D, it's much more effective than the prescription stuff. Here is a quote from page 50 of my vitamin D book:
7. Houghton, L. A., & Vieth, R. (2006). The case against ergocalciferol (vitamin D2) as a vitamin supplement. American Journal of Clinical Nutrition, 84(4), 694–697. Retrieved from http://ajcn.nutrition.org/content/84/4/694.full
I have to agree with everyone who responded to your post. If you want to get your life back, you will need to get serious about avoiding all of the foods that cause your immune system to produce antibodies, and take enough vitamin D3 (so that your immune system can begin to work properly again). 4,000 IU per day is not enough when you are that deficient.
As Sheila pointed out, this disease is not easy to control. If it were easy, physicians could do it.
Tex
If you are using prescription vitamin D, you are handicapping yourself. Use OTC vitamin D, it's much more effective than the prescription stuff. Here is a quote from page 50 of my vitamin D book:
I added the red emphasis for the purposes of this post. Here is research reference number 7 from that quote:2 alternative forms of vitamin D supplements exist.
Note that the research articles cited here refer to vitamin D3, rather than just plain vitamin D. In fact, 2 forms of vitamin D are commonly available — vitamin D2 and vitamin D3. Vitamin D2 is otherwise known as ergocalciferol, and vitamin D3 is known as cholecalciferol. Interestingly, when physicians prescribe vitamin D, the prescriptions almost invariably refer to vitamin D2, but by contrast, virtually all of the over-the-counter vitamin D supplements are in the form of vitamin D3.
Many decades ago, vitamin D2 was thought to be the equivalent of vitamin D3, but that assumption can no longer be justified. Why physicians continue to prescribe vitamin D2 is somewhat of a mystery, since research shows that vitamin D3 supplements are consistently more effective than vitamin D2 supplements. Houghton and Vieth, (2006), summed up the case against vitamin D2 supplements with this statement:7
The case that vitamin D2 should no longer be considered equivalent to vitamin D3 is based on differences in their efficacy at raising serum 25-hydroxyvitamin D, diminished binding of vitamin D2 metabolites to vitamin D binding protein in plasma, and a nonphysiologic metabolism and shorter shelf life of vitamin D2. Vitamin D2, or ergocalciferol, should not be regarded as a nutrient suitable for supplementation or fortification. (p. 696)
7. Houghton, L. A., & Vieth, R. (2006). The case against ergocalciferol (vitamin D2) as a vitamin supplement. American Journal of Clinical Nutrition, 84(4), 694–697. Retrieved from http://ajcn.nutrition.org/content/84/4/694.full
I have to agree with everyone who responded to your post. If you want to get your life back, you will need to get serious about avoiding all of the foods that cause your immune system to produce antibodies, and take enough vitamin D3 (so that your immune system can begin to work properly again). 4,000 IU per day is not enough when you are that deficient.
As Sheila pointed out, this disease is not easy to control. If it were easy, physicians could do it.
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.
Good for you.Bearcat wrote:I ONLY use cholecalciferol, D3. I tell all of my patients how much better it is than Ergo... D2 is basically crap for any purpose and I want to call every physician who puts their patients on it.
I obviously misunderstood your post, and I apologize for that.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.
BearcatRx,
For me diet has been much more complicated - and has taken much more time - than I previously thought. I quit gluten two times with no improvement at all just like you. I then discovered that I have high antibody titers against gluten in blood (IgA). This strongly implies a role for gluten in my case. I also found out that the instant coffee I've been drinking large amounts of often is gluten polluted. My stomach in general don't agree with coffee and diary, so third time around I quit coffee and reduced diary as well. I've also noticed a couple more food sensitivities (corn, peanuts). Since my latest diet changes I've been able to cut medication to less than half. I think you should consider giving diet changes another chance.
When it comes to medication, I'm so lucky that my symptoms resolved with 9 mg budesonide within 3 days without diet changes. I also tried cholestyramine as an alternative to budesonide. 16 g of cholestyramine made it possible to stay in remission without diet changes. After the latest diet changes, I now keep in remission by alternating periodically between 3 mg budesonide and 8 g cholestyramine. At some point I hope I will be able to control the MC by diet alone.
I think bile acid binders like cholestyramine, colestipol and colesevelam are interesting options for MC. Studies have shown that the ileum/small intestines are inflamed in half of the MC cases - and that over 40% has bile acid malabsorption (BAM). BAM causes diarrhea in it's own right. Other studies have shown that even MC patients without BAM often responds favorable to bile acid binders. This might be because bile acid binders also are known to bind toxins, food additives, bacteria and other allergens. For me it's an added bonus that bile acid binders reduce cholesterol and increase insulin sensitivity. I think you should consider discussing this option with you doctor.
BTW: Have you been tested for celiac disease? Do you use statins?
Best Regards,
Tor
For me diet has been much more complicated - and has taken much more time - than I previously thought. I quit gluten two times with no improvement at all just like you. I then discovered that I have high antibody titers against gluten in blood (IgA). This strongly implies a role for gluten in my case. I also found out that the instant coffee I've been drinking large amounts of often is gluten polluted. My stomach in general don't agree with coffee and diary, so third time around I quit coffee and reduced diary as well. I've also noticed a couple more food sensitivities (corn, peanuts). Since my latest diet changes I've been able to cut medication to less than half. I think you should consider giving diet changes another chance.
When it comes to medication, I'm so lucky that my symptoms resolved with 9 mg budesonide within 3 days without diet changes. I also tried cholestyramine as an alternative to budesonide. 16 g of cholestyramine made it possible to stay in remission without diet changes. After the latest diet changes, I now keep in remission by alternating periodically between 3 mg budesonide and 8 g cholestyramine. At some point I hope I will be able to control the MC by diet alone.
I think bile acid binders like cholestyramine, colestipol and colesevelam are interesting options for MC. Studies have shown that the ileum/small intestines are inflamed in half of the MC cases - and that over 40% has bile acid malabsorption (BAM). BAM causes diarrhea in it's own right. Other studies have shown that even MC patients without BAM often responds favorable to bile acid binders. This might be because bile acid binders also are known to bind toxins, food additives, bacteria and other allergens. For me it's an added bonus that bile acid binders reduce cholesterol and increase insulin sensitivity. I think you should consider discussing this option with you doctor.
BTW: Have you been tested for celiac disease? Do you use statins?
Best Regards,
Tor
Life's hard and then you die
Tor,
I'm only 34 years old and am not on any statin medications. My doctor did the serum celiac blood test which came back negative but we all know that doesn't hold a lot of water. Since the Entocort hasn't been effective, I've been supplementing with 8 bismuth subsalicylate 262mg per day for 8 weeks. It's been shown to be very effective and is extremely inexpensive. However, recently I've started to experience tremors in both hands, a sign of salicylate toxicity so I'm going to have to stop. Entocort + Pepto can cause increased levels of salicylate in the blood which I didn't expect. This has been a fun time.
I'm thinking I'm just going to bite the bullet and go with the EnteroLabs testing. $500 is a bit pricey but since my syptoms just don't want to get any better and may even slowly get worse, it just may be worth it.
I'm only 34 years old and am not on any statin medications. My doctor did the serum celiac blood test which came back negative but we all know that doesn't hold a lot of water. Since the Entocort hasn't been effective, I've been supplementing with 8 bismuth subsalicylate 262mg per day for 8 weeks. It's been shown to be very effective and is extremely inexpensive. However, recently I've started to experience tremors in both hands, a sign of salicylate toxicity so I'm going to have to stop. Entocort + Pepto can cause increased levels of salicylate in the blood which I didn't expect. This has been a fun time.
I'm thinking I'm just going to bite the bullet and go with the EnteroLabs testing. $500 is a bit pricey but since my syptoms just don't want to get any better and may even slowly get worse, it just may be worth it.