Hubby may start on Tecfidera, questions

[WifetoP]

Hi!
We are heading to the MS clinic today where my husband may be starting on Tecfidera. Long story short, dx w/ ms as a teen 30 years ago, told it was benign, clear now that it wasn't and he's been significantly impacted. Not clear that there have been any new lesions but certainly worsening of function.

My husband also had a whipple surgery 6 years ago due to a pancreatic tumor (benign thank goodness) which removed part of his pancreas and his small intestine. I'm worried about the Tecfidera on his digestive system (some of you have talked about liver enzymes.)
He has an amazing neurologist at an MS clinic, but I can't get anyone to consider the impact of Tecfidera on an unusual digestive system. Any thoughts?

Thank you in advance!

[lyndacarol]

We are heading to the MS clinic today where my husband may be starting on Tecfidera. Long story short, dx w/ ms as a teen 30 years ago, told it was benign, clear now that it wasn't and he's been significantly impacted. Not clear that there have been any new lesions but certainly worsening of function.

My husband also had a whipple surgery 6 years ago due to a pancreatic tumor (benign thank goodness) which removed part of his pancreas and his small intestine. I'm worried about the Tecfidera on his digestive system (some of you have talked about liver enzymes.)
He has an amazing neurologist at an MS clinic, but I can't get anyone to consider the impact of Tecfidera on an unusual digestive system. Any thoughts?

Welcome to ThisIsMS, WifetoP.

My comments have nothing to do with Tecfidera. I have never used it.

My brother-in-law had a Whipple surgery last October. His pancreatic tumor was malignant, he has taken chemo, and radiation will be considered this week; but he is doing well – surgeon at Georgetown thinks he got it all (Your husband is fortunate indeed that his was benign!).

As you probably know, the part of the digestive system removed in a Whipple is critical to vitamin B12 absorption. I hope your husband gets B12 injections (which will be necessary throughout his lifetime). I hope the difference between methylcobalamin and cyanocobalamin (which is the form given in doctors' offices in the US) has been explained to you. The cyano form must be decyanated first and is less bioavailable than the methyl form. This difference may be especially important when considering MS medication that may affect the liver.

[WifetoP]

No, no one has mentioned vitamin B12. I've asked different drs about looking for vitamin deficiencies, but am brushed off a bit. I feel like the MS has gotten worse since the tumor.
I did not know about the meds either, so thank you. I hope that your brother in law continues to do well.

We are heading to the MS clinic today where my husband may be starting on Tecfidera. Long story short, dx w/ ms as a teen 30 years ago, told it was benign, clear now that it wasn't and he's been significantly impacted. Not clear that there have been any new lesions but certainly worsening of function.

My husband also had a whipple surgery 6 years ago due to a pancreatic tumor (benign thank goodness) which removed part of his pancreas and his small intestine. I'm worried about the Tecfidera on his digestive system (some of you have talked about liver enzymes.)
He has an amazing neurologist at an MS clinic, but I can't get anyone to consider the impact of Tecfidera on an unusual digestive system. Any thoughts?

Welcome to ThisIsMS, WifetoP.

My comments have nothing to do with Tecfidera. I have never used it.

My brother-in-law had a Whipple surgery last October. His pancreatic tumor was malignant, he has taken chemo, and radiation will be considered this week; but he is doing well – surgeon at Georgetown thinks he got it all (Your husband is fortunate indeed that his was benign!).

As you probably know, the part of the digestive system removed in a Whipple is critical to vitamin B12 absorption. I hope your husband gets B12 injections (which will be necessary throughout his lifetime). I hope the difference between methylcobalamin and cyanocobalamin (which is the form given in doctors' offices in the US) has been explained to you. The cyano form must be decyanated first and is less bioavailable than the methyl form. This difference may be especially important when considering MS medication that may affect the liver.

[lyndacarol]

No, no one has mentioned vitamin B12. I've asked different drs about looking for vitamin deficiencies, but am brushed off a bit. I feel like the MS has gotten worse since the tumor.
I did not know about the meds either, so thank you. I hope that your brother in law continues to do well.

You may find the following 10-minute video enlightening:
"Vitamin B12 Metabolism – MADE EASY" by Medical Institution

A good explanation of the complicated B12 pathway (any missing step will interfere with absorption into the bloodstream):
In the stomach's body section, chief cells produce pepsinogen, which is activated by acid to become pepsin. Also in the stomach's body section, parietal cells produce Intrinsic Factor.

1. Animal-based food containing B12 is consumed.
2. In stomach, pepsin separates vitamin B12 from food source.
3. In stomach, R-binders, a.k.a. R-protein (produced in mouth's salivary glands), bind to B12..
4. Both the Rprotein-B12 complex and the free Intrinsic Factor travel into the duodenum.
5. In the duodenum, proteases (from the pancreas) separate the R-protein from B12.
6. Intrinsic Factor then binds with the free B12 in the duodenum, making a new complex (B12 + IF).
7. This "B12+IF" complex travels through the remaining duodenum, through the jejunum, and through the ileum; at the terminal ileum, the B12 is absorbed with the help of Intrinsic Factor.

Vb12 malabsorption can be due to:
1. Diet lacking B12 (e.g., vegetarians/vegans)
2. Intrinsic Factor deficiency (a.k.a. pernicious anemia/chronic gastritis)
3. Lack of proteases ("pancreatic insufficiency" as in chronic pancreatitis)… or surgery
4. Bacterial overgrowth, in the very narrow terminal ileum


The outdated, inaccurate "serum B12" test is relied on too often by doctors in the US; the newer, more accurate HoloTc (a.k.a. a HoloTranscobalamin) blood test is not yet available everywhere for identifying a B12 deficiency. If your husband is interested in screening for B12 deficiency, he may have to see a hematologist (since his previous doctors have not been helpful). He should not take B12 supplements before testing, as doing so may skew the test results (although, given his circumstance, even oral supplements may not be able to be digestive). And I always recommend that patients request copies of any test results – the actual test result numbers are helpful to have.

By the way, the symptoms of MS are consistent with many other conditions, including B12 deficiency. I have heard author Sally Pacholok, RN, BSN, say: "MS is a demyelinating disease and so is B12 deficiency. You can't tell the two apart unless you test for that."