When to go off REBIF - went Gluten Free and Colitis healed

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When to go off REBIF - went Gluten Free and Colitis healed

Postby dano » Tue Jan 30, 2018 5:44 pm

I have a question for anyone that may have some input. My wife has MS and 3 years ago we went Gluten free and she healed her gut and eliminated her Colitis. She has been on REBIF for 8 years and can't tolerate it any longer, so, we are wondering if she still needs to be on it. We are eating healthy (gluten free, dairy free, sugar free, red meat almost free) and have healed her gut eliminating Colitis which has been confirmed by a colonoscopy. Does anyone have any insight or experience on this ? If we are eating the right things and her gut is healed, we are wondering if going off the drug is the right thing to do. She can't take it much longer, so we need a plan. If Gluten was the culprit in the disease process, then we have that covered. If a leaky gut from the Colitis was the issue, then we have that covered as well. We were thinking about LDN, just in case, but not sure if we can find anyone to prescribe it. We will be looking into it.
I have read so many older post of people going off REBIF after changing their diet, so looking for some feedback. We don't have a Functional doc anywhere near our location, which is going to make it difficult acquiring LDN. thx...
History......
RRMS for 17 years - only a few very minor relapses for first 10 years
Bad attack 8 yrs ago - 3 months in hospital - went on REBIF - left with noticeable gait -
very minor relapses 2015 and 2016 - the Jan 2016 was a cheat on gluten -colitis was still healing as well
Colitis confirmed 11 yrs ago with colonoscopy...
Colitis confirmed cured with colonoscopy 6 months ago. Fall 2017
Colitis was cured going Gluten free with some sugar free....the dairy free, red meat free and total sugar free
was added 6 months ago...
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Tue Jan 30, 2018 6:20 pm

hi what was her serum zinc level before and after quitting gluten dairy and sugar?

zinc is the glue that binds the tight junctions of a healthy gastrointestinal tract membrane

gluten, dairy, sugar (and phytates and alcohol) are all drains on zinc resources.

red meat is among the available sources of dietary zinc.

question: what are the main sources of dietary zinc now, other than the remaining red meat?
any zinc-rich seafood in the routine?

oysters are so potent you can get by with weekly servings. i ate an oyster this evening. wish i didn't think they were gross.

low serum zinc is a consistent finding across many MS studies. you can be 'deficient' or 'normal' depending which lab you visit. for example a friend brought me bloodwork the other eve. reference range 7-14 umol/L, her level 10. 'normal'. no problem.

at the local hospital, reference range is 11.5-18.5 umol/L. if she'd gone there, she'd have been 'deficient'.

so it's a crapshoot trying to identlfy a problem unless you know exactly what you're looking for. ie serum zinc in the high teens.

as for drugs. after dx, i only got as far as receiving the injection kit for rebif. my insurer had agreed to cover even though rebif was not on their usual schedule of drugs covered. i read so much so quickly that i decided to call it off before i ever had the first nurse visit. upshot, can't comment on stopping rebif!!

i used to react very poorly to gluten. after correcting poor zinc status, it's no worries whatsoever. in moderation!

still drug free 11 yrs post dx.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Tue Jan 30, 2018 7:04 pm

Not sure on the zinc, but she is going to doc tomorrow for blood work, so we will see if
they will check it as well...
and check for any older tests.....

She eats oysters and shrimp.....
we may have to add in a bit more red meat....will see what the number comes back as.....

I will get back to you if we can find anything out on the zinc...

thx
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Tue Jan 30, 2018 10:16 pm

i'll look forward to hearing back re any available zinc info!
again, for interpreting test results: ignore reference ranges
target high teens if units are umol/L. ~120 if units are mg/dl.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby NHE » Wed Jan 31, 2018 12:04 am

dano wrote:I have a question for anyone that may have some input. My wife has MS and 3 years ago we went Gluten free and she healed her gut and eliminated her Colitis. She has been on REBIF for 8 years and can't tolerate it any longer, so, we are wondering if she still needs to be on it.

None of the CRAB DMDs prevent long term progression of disability.

https://www.youtube.com/watch?v=OqY-_K1fYJY
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Jan 31, 2018 6:52 am

Good point for getting off the drug......although, that's if nothing else changes with diet and gut health....

That video was old and just a bit depressing and I don't believe that is the way it has to be....
I am glad you shared it, but that video actually made me a bit angry so I only listen to 5 mins of it and skimmed thru it.
I believe this can be beaten and there is lots that can be done to fight it...
example....
The last time my wife had a relapse, I pulled out an old UVB sun lamp that my parents had and we stopped the relapse from progressing in 2 days. She was heading into an event that would have normally required Solumedrol. We used the lamp 20 mins a side and twice a day..The lamp was 3 ft away....There are lots of the sun lamps for sale on eBay....search for vintage sunlamp.
We later added more vitamin D to the protocol, but is it the vitamin D that helped or was it the actual UVB on her skin. (UVB does kill bacteria etc)
Anyways, have to think positive....

My thought, going gluten free and healing the gut, may just prevent the progressive aspect and maybe its the whole deal.
Her Neuro wanted to take her off REBIF, because he thought she was going progressive, but then he basically said
that he's not sure what's going on....which was nothing.....he expected things to get worse.....or more relapses...
so she is still on it, but he may have been right for the wrong reason's on taking her off REBIF...
He didn't know she was gluten free and colitis was healing , but they just don't want hear about important stuff like that....
and actually that makes me even more angry...very angry....lol
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Wed Jan 31, 2018 7:05 am

re the sun lamp. question: do you also have serum 25(OH)D3 levels on file?
and from the cofactor interaction angle, do you have serum magnesium levels.
also, what is the supplemental d3 element of the regimen? anything else in there?

a healthy gut (you may have some input for our similarly titled topic in the 'natural approach' forum) is certainly one of several important keys to maintaining optimal healthy nutrient status.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Jan 31, 2018 7:27 am

will get back to on what I can find out in next few days...
she was on 2000 D3 and now 4000

The gut health is main the cause for most auto immune diseases, so is it the same for
MS, or is there an added component .....that is the question....
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Wed Jan 31, 2018 10:44 am

poor nutritional status is certainly in an unfortunate feedback loop with impaired gut health.

a number of common/popular and yet also diverse dietary and lifestyle habits can take individuals down different paths to a similar nutrient deficit situation.

from there, weakened intestinal membrane integrity can lead to more immune system triggers, in the context of parallel weakened immune response.

with poor intestinal membrane integrity affecting nutrient absorption and retention, immune response and the structural integrity of the GI tract are weakened still further.

rinse and repeat. downward spiral.

with each essential nutrient interacting in hundreds of interconnected pathways, that's only the tip of the iceberg.

will be very interested to hear updates re any available nutritional bloodwork results.

if the entire supplement regimen has been 2000 IU vit D3 and now 4000 IU vit D3, there's definitely room for caution and some tweaking.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Jan 31, 2018 11:14 am

that wasn't the entire supplement regime....That was D3

we don't have any previous levels available at this time for zinc. New Doc and new Neuro....
will know D3 later today...

They checked these today, so what are your normal ranges for
Magnesium
Zinc -> 18.5 umol/L
D3
Folate
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Wed Jan 31, 2018 12:41 pm

hi okay 'healthy controls' ranges include

magnesium:
within reference range of 1.5-2.5 mg/dl or 0.65 - 1.05 mmol/l or 0.70 - 1.10 mmol/L,
aim for 2.3-2.7 mg/dl aka 0.95 - 1.1 mmol/L
-although this represents the top half of many reference ranges, these levels are quite conservative on the low side;
-within this upper section of typical reference ranges, research has noted lower but not zero likelihood of magnesium deficiency symptoms
-symptoms and impacts of magnesium excess are associated with far higher levels

within a given zinc reference range, whether 7-14 umol/L or 11.5-18.5 umol/L, aim for 18-18.5 umol/L or the 120 mg/dl ballpark

re d3, can aim for 125 nmol/L (50 ng/dl) to start, and consider higher levels AS LONG AS magnesium and other important cofactors incl calcium are also monitored and levels maintained (neither too high nor too low).

i don't have an optimal target for folate.
re b12 though, 500 pg/ml aka 370 pmol/L.

potentially interesting related study:
https://jamanetwork.com/journals/jamane ... act/592442

and also re targets, related chats
natural-approach-f27/topic29825.html#p252169
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Jan 31, 2018 4:15 pm

thanks for info....
the only previous results that I can get, so far is B12 from Feb 2016
at 1078 pmol/L...
we will see in next day or 2 what it is now...
thx again,,,
dano
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby jimmylegs » Wed Jan 31, 2018 4:44 pm

pretty high. what's the entire regimen been lately?

interesting that the article linked above was specific to subacute combined degeneration in context of high b12 and folate treatment.

in your scenario, is the folate investigation coming from you or from the docs?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 11191
Joined: Sat Mar 11, 2006 4:00 pm

Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Jan 31, 2018 5:31 pm

I am not sure what she was taking for B12 in 2016,
but 2500 mcg are on current bottle, so I told her to stop until we get new results.

the folate and magnesium was our idea, since she has some fatique, which could from MS, or REBIF, or low magnesium
and low folate....
just some things that we are checking to help decide on what to do....
we won't know if its the REBIF until she is off it for 3 months...
if she didn't have the fatique, she probably would have already gone off it....
but it is a side effect of the drug.....so we are in an endless loop....lol
Last edited by dano on Fri Feb 09, 2018 2:05 pm, edited 1 time in total.
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Re: When to go off REBIF - went Gluten Free and Colitis heal

Postby dano » Wed Jan 31, 2018 5:51 pm

She is currently only taking ....

D3 -4000 mg - tested today
B12 - 2500 mcg - tested today
Multivitamin

We have a list of supplements that we were looking to purchase this week after we get test results..
Acetyl-L-Carnitine
Alpha Lipod Acid
Ribose
COq10
NAC
Omega 3
Magnesium - tested today
Zinc - tested today
Folate - tested today
Selenium
Creatine
Sulphur

Do you have any thoughts on the list...
Last edited by dano on Fri Feb 09, 2018 2:03 pm, edited 1 time in total.
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