agree with Tex's reply
and a key part of moderating mast cells levels in the body is nutrients - such as magnesium and B6.
key part of moderating inflammation is Vit D3.
sticking with bland low inflammation, low histamine eating plan, and essential supplements is your best way to good long term healing.
New Member, 19, Female, LC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I first started researching into Mast Cell Activation Syndrome, indeed some of her symptoms seem mast cell related. In fact, she is currently on oral Ketotifen which has really helped. But then she had her gallbladder out 10/2016 (normal imaging, no stones nor sludge, but nonfunctional 7% HIDA) and I ran across a publication about Lymphocytic Cholestitis, then she had some sort of Esophagus inflammation in early 2017 (endo biopsies tested neg for eosinophils and visually normal), then I ran across a publication about Lymphocytic Esophagitis. She needs Restasis for extremely dry eyes, which is cyclosporine which is active against lymphocytes. One endo diagnosed autoimmune thyroiditis (without the Hashimoto's antibodies) lymphocytic in nature. And she's had symptoms very similar to lymphocytic hypophysitis (polyuria, amenorrhea). It seems to me perhaps the mast cells and lymphocytes have gotten together and are not playing very nice.
Her pediatric cardiologist has been suggesting Myer's Cocktail infusions as a form of nutritional therapy. We asked her rheumy who had to look it up! There is a company that will do those infusions but they're an hour's drive away.
Her pediatric cardiologist has been suggesting Myer's Cocktail infusions as a form of nutritional therapy. We asked her rheumy who had to look it up! There is a company that will do those infusions but they're an hour's drive away.
The Rheumy has declined switching the Sulfasalazine to Mesalamine to Gastro#1, who is declining any further treatment to Gastro#2, whom we now can't see until May 14, which is a full 3 months away. We are appealing this insanity to our PCP. We have a blood test order coming up soon and will try to get Vitamin D added to see where it is now with all this diarrhea. In the past, she's been above 50, but our retired medical doctor friend has recommended getting it to around 75 to try to improve its antiinflammatory effects.
Was wondering what kind of Mesalamine dosage we should be looking for.
Was wondering what kind of Mesalamine dosage we should be looking for.
Kudos to your friend. He or she is apparently way ahead of his or her colleagues in understanding inflammation.
I thought the dosing for mesalamine was pretty well standardized at a fixed labeled dose range (based on weight for pediatric use). I have no idea whether she should try a maximum dose, a minimum dose, or somewhere in between. It would be nice if she had cooperative doctors to input some useful information, but apparently they're frustrated by the situation when they run into a tough case who appears to be refractory to all of their usual treatments. They may be out of ideas.
Mesalamine Dosage
Tex
I thought the dosing for mesalamine was pretty well standardized at a fixed labeled dose range (based on weight for pediatric use). I have no idea whether she should try a maximum dose, a minimum dose, or somewhere in between. It would be nice if she had cooperative doctors to input some useful information, but apparently they're frustrated by the situation when they run into a tough case who appears to be refractory to all of their usual treatments. They may be out of ideas.
Mesalamine Dosage
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.
Thanks Tex. I've seen the Drugs.com dosing page earlier and was really confused - the usual adult dose for active ulcerative colitis was
800 mg delayed release tablets: 1600 mg orally 3 times a day, which would be 4.8g per day
while the usual adult dose for maintenance of ulcerative colitis was 1.6 g orally daily
The 4.8g dosage I thought was whopping compared to her current Sulfasalazine dose of 2g per day, considering that the Mesalamine is only part of Sulfasalazine. The maintenance dose sounded more reasonable.
Her case may be "refractory" to them only because they seem to want to stay inside their little specialty boxes and "treat to test" and "treat by guidelines" and "treat with FDA approved medicines" (which require a recognized diagnosis) rather than actually understand how the symptoms are being caused and how medicines actually work in order to develop a better treatment plan.
Your input and my internet research made it clear to me as the nose on my face that we need to get off Sulfasalazine and get onto Mesalamine to help us climb out of this hole. I'm actually surprised that there have been studies that seemed to show Sulfasalazine actually working for MLC in the first place, given that Sulfapyridine is an antibiotic and I'm sure a given to mess up the gut flora. Why anyone would object to starting with a current prescription and replacing it with another that actually just has one less ingredient is beyond me.
Sorry, I'm venting.
800 mg delayed release tablets: 1600 mg orally 3 times a day, which would be 4.8g per day
while the usual adult dose for maintenance of ulcerative colitis was 1.6 g orally daily
The 4.8g dosage I thought was whopping compared to her current Sulfasalazine dose of 2g per day, considering that the Mesalamine is only part of Sulfasalazine. The maintenance dose sounded more reasonable.
Her case may be "refractory" to them only because they seem to want to stay inside their little specialty boxes and "treat to test" and "treat by guidelines" and "treat with FDA approved medicines" (which require a recognized diagnosis) rather than actually understand how the symptoms are being caused and how medicines actually work in order to develop a better treatment plan.
Your input and my internet research made it clear to me as the nose on my face that we need to get off Sulfasalazine and get onto Mesalamine to help us climb out of this hole. I'm actually surprised that there have been studies that seemed to show Sulfasalazine actually working for MLC in the first place, given that Sulfapyridine is an antibiotic and I'm sure a given to mess up the gut flora. Why anyone would object to starting with a current prescription and replacing it with another that actually just has one less ingredient is beyond me.
Sorry, I'm venting.
Jane,
The doctors you are dealing with must have all been trained at the same place, because nation-wide, I'll bet you would be hard pressed to find a doctor who would prescribe sulfasalazine to treat MC these days. That's an ancient rheumatoid arthritis treatment. It was once used to treat IBDs, but that all went out the window when mesalamine became available. And then budesonide became the preferred treatment for IBDs about the start of this century.
But professionals tend to stick together, and doctors are often some of the world's worst examples of professional cronyism, so they tend to defend each others actions, especially in a local situation, So it's not surprising that they would stick together to defend a poor choice of medications. Apparently they think they're treating an arthritis case. They must not realize that arthritis is secondary to all IBDs.
Tex
The doctors you are dealing with must have all been trained at the same place, because nation-wide, I'll bet you would be hard pressed to find a doctor who would prescribe sulfasalazine to treat MC these days. That's an ancient rheumatoid arthritis treatment. It was once used to treat IBDs, but that all went out the window when mesalamine became available. And then budesonide became the preferred treatment for IBDs about the start of this century.
But professionals tend to stick together, and doctors are often some of the world's worst examples of professional cronyism, so they tend to defend each others actions, especially in a local situation, So it's not surprising that they would stick together to defend a poor choice of medications. Apparently they think they're treating an arthritis case. They must not realize that arthritis is secondary to all IBDs.
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.
Gotta agree with Tex. My GI docs said ‘nobody uses that stuff anymore’ in reference to sulfasalazine, and that was six years ago. I hope some alternatives come your way- and quickly!
Carol
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Thanks y'all. I think the rheumy prescribed sulfasalazine to help with her arthralgia, and declined switching to mesalamine because perhaps she doesn't prescribe that in her practice. Gastro #1 was a terrific diagnostician, but not familiar with treatment of celiac and MC and has been trying to get us to Gastro #2, who is in downtown Houston and about an hour's drive away, and since she's a specialist, has a long wait.
Meanwhile, the soap opera continues - our PCP was called up for active duty and is now on military leave of absence and has instructed us it's time for us to find a new PCP (we did see this coming though, but we really liked him). We have an appointment this Tuesday with the new PCP to press our case for switching to mesa from sulfa. I feel like we're begging for narcotics. Sheesh.
One small glimmer of hope is that she's feeling a little better with the thyroid med adjustment, plus has been able to taper down the prednisone by half, so the sulfa and budesinide are working to some degree.
Baby steps ...
Meanwhile, the soap opera continues - our PCP was called up for active duty and is now on military leave of absence and has instructed us it's time for us to find a new PCP (we did see this coming though, but we really liked him). We have an appointment this Tuesday with the new PCP to press our case for switching to mesa from sulfa. I feel like we're begging for narcotics. Sheesh.
One small glimmer of hope is that she's feeling a little better with the thyroid med adjustment, plus has been able to taper down the prednisone by half, so the sulfa and budesinide are working to some degree.
Baby steps ...
... and we hurry up and wait ... saw our new PCP (we had to leave the old one as he got called up for duty), she was not at all familiar with sulfasalazine or mesalamine and would not switch it. Since our old gastro doesn't want anything more to do with us and our new gastro specialist-specialist isn't until May 14, the PCP suggested trying to find a new temporary gastro. So we did and actually got to see her this past Friday. I felt like I was twisting an arm but she did write us a scrip for mesalamine, however that is on hold at the moment because a pre-authorization is needed (I guess the doctor needs to convince the insurance company it's needed). We just sent in some stool samples and have an MRI of the small intestines scheduled next Monday (as that hasn't been thoroughly checked out yet) to see if anything shows up for the pain in the upper left quadrant.
In the meantime, I'm curious, has anyone with MC also been checked out for Pancreatic Insufficiency?
In the meantime, I'm curious, has anyone with MC also been checked out for Pancreatic Insufficiency?
Many members have — it's a fairly common occurrence. MC can cause inflammation of any organ in the digestive system, and inflammation interferes with enzyme output of course. It will automatically resolve when the MC is controlled.
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.
Newbie
I was diagnosed with mc in January. I opted not to go on any of the meds, but to swig pepto Bishop 4 x day for a month. It slowed things down, but had a few flare ups and decided to do a spreadsheet with my meals. My doctor had said I could eat what I want and had no suggestions for foods. After doing a ton of reading, I switched to Gluten Free that I think has really helped. I also got a book Medical Medium by Anthony William. It’s kind of off norm, but there was one little section in the “leaky gut” section that talks about Ammonia Permeability and Hydrochloric Acid. He suggests having a glass(actually 16 oz) of freshly juiced celery juice first thing in th morning. I HATE celery but I’m trying this (but only 8 oz). So far going gf & drinking this obnoxious juice I seem to be a little more in control. I just found this web site and look forward to hearing from my new mc friend
Moving forward slowly ... we finally got the Lialda prescription for 1.2 g twice a day. Just started that on 3/2. No change yet but figure if the sulfa was messing things up it would take a little time for the system to recover.
New gastro had her do an MRI Enterography on 3/5 to check for any small intestine problems that might have been missed. She actually tolerated that quite well though premedicated with a little Benadryl. We brought the DVD home with us, and wow, I was blown away by the resolution of the scans. Not that I knew what I was looking at LOL! Radiology report said small intestine was normal, pancreas was normal, biliary system looked okay. Did confirm colitis (no surprise there but glad that it showed up in imaging), and also a curve ball - PCOS! Bright strings of pearls ...
So ... anyone here also have PCOS? Can PCOS contribute to diarrhea?
We have an endocrinology appointment next week, we'll see where we go from there.
Since Crohn's, fistulas, abscesses, etc. have been ruled out, my difficult patient is now willing to try some supplements, and eventually cholystyramine (one thing at a time) to see if pH is a source of the problem. On a MC facebook page, there was discussion of alkaline diets, and of course that got me into learning about the stomach and pancreas and how the pancreas is supposed to secrete carbonate to neutralize the acid in the food coming out of the stomach and make things more pH neutral going into the intestines. Wow, I can see how a lot of things can go wrong there ... Celery juice was mentioned on the MC facebook post as being alkaline, I need to check with her to see if she could tolerate it. Also might go find some pH test strips to try testing food.
New gastro had her do an MRI Enterography on 3/5 to check for any small intestine problems that might have been missed. She actually tolerated that quite well though premedicated with a little Benadryl. We brought the DVD home with us, and wow, I was blown away by the resolution of the scans. Not that I knew what I was looking at LOL! Radiology report said small intestine was normal, pancreas was normal, biliary system looked okay. Did confirm colitis (no surprise there but glad that it showed up in imaging), and also a curve ball - PCOS! Bright strings of pearls ...
So ... anyone here also have PCOS? Can PCOS contribute to diarrhea?
We have an endocrinology appointment next week, we'll see where we go from there.
Since Crohn's, fistulas, abscesses, etc. have been ruled out, my difficult patient is now willing to try some supplements, and eventually cholystyramine (one thing at a time) to see if pH is a source of the problem. On a MC facebook page, there was discussion of alkaline diets, and of course that got me into learning about the stomach and pancreas and how the pancreas is supposed to secrete carbonate to neutralize the acid in the food coming out of the stomach and make things more pH neutral going into the intestines. Wow, I can see how a lot of things can go wrong there ... Celery juice was mentioned on the MC facebook post as being alkaline, I need to check with her to see if she could tolerate it. Also might go find some pH test strips to try testing food.