3 Questions

[TOBEY32]

1. Do you take Vitamin K?

2. Definition of remission (a simple answer's appreciated)? Do ANCA results best determine how one is doing overall?

3. Do you take a multi-enzyme to help w/ food digestion/absorption? I've heard some vits/supps can alter your meds in dangerous ways or make them ineffective, and have wondered about this one in particular.

Thanks much... David

[delorisdoe]

1. No

2. for me I was off all meds except bactrim and my anca was below 20-however for most the anca has nothing to do with anything but the initial diagnosis and is unimportant.

3. No

[Dirty Don]

1. no
2. feeling like old self w/o pred!!! and off my base drug, for me it's mtx.
3. nope, but I do know grapefruit is bad for many drugs

[TOBEY32]

Now I'm confused - I thought ANCA was everything regarding one's Weg's health? During my last kidney appt I was told my ANCA was good - why would he bother going over it if it didn't so much apply anymore?

[Lightwarrior]

1. Do you take Vitamin K?

2. Definition of remission (a simple answer's appreciated)? Do ANCA results best determine how one is doing overall?

3. Do you take a multi-enzyme to help w/ food digestion/absorption? I've heard some vits/supps can alter your meds in dangerous ways or make them ineffective, and have wondered about this one in particular.

Thanks much... David

1. no
2. When you have no symptoms (my remission is achieved only with meds, it is not a med free one)
3. No

[Lightwarrior]

Now I'm confused - I thought ANCA was everything regarding one's Weg's health? During my last kidney appt I was told my ANCA was good - why would he bother going over it if it didn't so much apply anymore?

My nephrologist is old school and always wants to see the ANCA. My understanding is that ANCA is only useful to diagnose.

[pberggren1]

My neph, my main Wegs doc, like to do the ANCA now and then too.

ANCA can become an unreliable marker for disease activity in many. But it is still a good idea to do it now and then especially when symptoms are popping up or getting worse and when things are good again.

[Dryhill]

1. Do you take Vitamin K?

2. Definition of remission (a simple answer's appreciated)? Do ANCA results best determine how one is doing overall?

3. Do you take a multi-enzyme to help w/ food digestion/absorption? I've heard some vits/supps can alter your meds in dangerous ways or make them ineffective, and have wondered about this one in particular.

Thanks much... David

1. & 3. No. Here in the UK the National Health Service believes it is much better to have a balanced diet than to have extra supplements. The exception being if the individual has problems producing a particular vitamin/enzyme, or their medication causes problems. I am prescribed Calcium and vitamin D3 due to the effects Pred has on bone density.

2. My consulant only gets occasional ANCA tests. Just as Phil says to confirm if symptoms are worsening or improving.

My understanding of being in remission is being well when drug free, but hey I am comparatively a newbie and am stiil waiting to attain this magical state.

Jim

[Al]

Now I'm confused - I thought ANCA was everything regarding one's Weg's health? During my last kidney appt I was told my ANCA was good - why would he bother going over it if it didn't so much apply anymore?

ANCA are more than a marker, but less than a disease, David. Consider them like the underbrush in the forest: If a fire were to break out, they would contribute to the conflagration, but could otherwise be there indefinitely without a problem. The real problem would be what gets charred. That is why treatment is about more than putting out the fire--taming down the inflammation. And yet, ANCA titers do tell a lot about the disease probability, and the disease process.

As for your original question,
1) No
2) A tricky business, and the only simple answer I can think of is: You haven't had active inflammation for a while. I realize this is not a very satisfying answer, since it is so incomplete, but the word "remission" is very slithery....
3) My doc has no problems with pro-biotics, and, in limited amounts, digestive enzymes. For me, he likes a daily high-quality multi-vitamin. He is leery of other supplements. The book on amlodipine, my BP med, calls for avoiding grapefruit. But I go short on most citrus anyway, because of the high potassium levels.

Al

[mishb]

1. Do you take Vitamin K?

2. Definition of remission (a simple answer's appreciated)? Do ANCA results best determine how one is doing overall?

3. Do you take a multi-enzyme to help w/ food digestion/absorption? I've heard some vits/supps can alter your meds in dangerous ways or make them ineffective, and have wondered about this one in particular.

Thanks much... David


1. No
2. I guess the feeling of general well being - doesn't matter whether it is due to medication or not. And my doc also does the ANCA twice a year, just to check on it's changes.
3. No.

I also avoid citrus but not for the reason Al does. I cannot have citrus because my joints become red, hot and inflammed within hours of even a tiny taste.

I have another question though, and I'm sorry to add one more to your list David, but .....
My skin has become very dry and according to my Rheumy it is the MTX making it this way. She told me to use a good skin moisturiser, but said, whatever I get, make sure it doesn't have any Vitamin K in it.
Has anyone heard of not been able to use Vitamin K cream and why would this be??

[Al]

....My skin has become very dry and according to my Rheumy it is the MTX making it this way. She told me to use a good skin moisturiser, but said, whatever I get, make sure it doesn't have any Vitamin K in it.
Has anyone heard of not been able to use Vitamin K cream and why would this be??

Can't think of a good reason, Michelle, though I have heard this elsewhere, so there must be one. Vitamin K is contraindicated when blood thinners are prescribed, but I'm not sure how this applies to skin lotions.

Al

[Sangye]

1. There is some in my multi-vitamin but I don't take it as a separate supplement. I'm on blood thinners so if I took it I'd have to adjust my dosage accordingly.
2. No signs or symptoms of active disease. You might still have symptoms but they are at least stable. ANCA is unreliable for most people as a measure of disease activity. It's useful for diagnosis.
3. I take an enzyme supplement.

[Sangye]

Michelle, you obviously don't have a skin cream deficiency. Assuming your thyroid function is fine, dry skin is usually an essential fatty acid deficiency or an oil deficiency in general.

[mishb]

Oh Michelle, You are a predhead sometimes.

Sorry, I meant to say Vitamin E. My rheumy told me to avoid any and all creams with Vitamin E in them.

[Al]

Oh Michelle, You are a predhead sometimes.

Sorry, I meant to say Vitamin E. My rheumy told me to avoid any and all creams with Vitamin E in them.

'S okay, Michelle. With my pred-soaked head, I've already forgotten what you said...!

Al

[delorisdoe]

Now I'm confused - I thought ANCA was everything regarding one's Weg's health? During my last kidney appt I was told my ANCA was good - why would he bother going over it if it didn't so much apply anymore?

Tobey, when I dont feel good with weg symptoms my ANCA is always very elevated. When I have no symptoms it is between 5-20. I have been like this since diagnosis and for me it is a helpful tool for deciding on treatment. From what I gather this is not the norm. Keep in mind my doctor has 10 + years of treating me and monitoring my anca results and for this reason he trusts them.

[Sangye]

Sorry, I meant to say Vitamin E. My rheumy told me to avoid any and all creams with Vitamin E in them.

Why is that?

[mishb]

I don't know, I was hoping someone on here would know the answer.

She even wrote it down for me so that I wouldn't forget. She writes everything down about our appointments and gives them to me.
I'm really bad at asking the reasons why, I just take it that she knows.
I then normally go and google it when I get back from my appointment.

She has definately written - Dry skin.... get good daily skin moisturiser and make sure it has NO Vitamin E.

[Al]

I don't know, I was hoping someone on here would know the answer.

She even wrote it down for me so that I wouldn't forget. She writes everything down about our appointments and gives them to me.
I'm really bad at asking the reasons why, I just take it that she knows.
I then normally go and google it when I get back from my appointment.

She has definately written - Dry skin.... get good daily skin moisturiser and make sure it has NO Vitamin E.

Just guessing, Michelle, but I am supposing that little or no research has been done on topical doses of vitamin E. It is an oil soluble vitamin, and, while "moisturizing", may trigger allergies and other immune reactions with an inappropriate dose. Also, I think that most dermatologists would consider it preferable to get your vitamin E from dietary sources (or, if necessary, an oral supplement), rather than through the skin. But, as I say, this is just a guess.

Al

[drz]

She has definately written - Dry skin.... get good daily skin moisturiser and make sure it has NO Vitamin E.

Maybe for this reason; Three doctors told me to stop taking Vitamin E too:


" Participants taking vitamin E, however, were 13% more likely to experience, and 21% more likely to be hospitalized for, heart failure, a statistically significant but unexpected finding not reported in other large studies.".....

"Furthermore, use of vitamin E was associated with a significantly increased risk of hemorrhagic stroke."

[mishb]

Maybe for this reason; Three doctors told me to stop taking Vitamin E too:


" Participants taking vitamin E, however, were 13% more likely to experience, and 21% more likely to be hospitalized for, heart failure, a statistically significant but unexpected finding not reported in other large studies.".....

"Furthermore, use of vitamin E was associated with a significantly increased risk of hemorrhagic stroke."

Wow, that has just blown me away.
I'm glad she told me to avoid it ......... but oh my gosh .....wow :ohmy:

[Sangye]

What's the source for that, drz?

[Al]

What's the source for that, drz?

I looked it up, Sangye. This seems to be drz' source:

Vitamin E (http://ods.od.nih.gov/factsheets/vitamine)

[mishb]

I looked it up, Sangye. This seems to be drz' source:

Vitamin E (http://ods.od.nih.gov/factsheets/vitamine)

I found that same source and was really surprised that it interacts with chemotherapy and also nsaids and blood thinning drugs like warfarin etc. as well
......It has literally blown me away and I don't think I will question my Rheumy again for a little while at least (she did well)

[Sangye]

This is very typical of medical research of nutritional supplements and foods. It's very common for them to refer to any form of E as "Vitamin E" as if splitting apart a nutrient or synthesizing one is just as good as the real deal. The end product of such research is wholly unreliable. For example, the study looking at the relationship between "Vitamin E" and cardiovascular health used a synthetic piece of the vitamin E complex. So it shouldn't come as a big surprise that if you put that synthesized nutrient into the body it doesn't prevent disease.

Putting all that aside, let's pretend they're all talking about vitamin E in its natural state.

As far as interacting with chemo, the article states there has been no randomized review of studies that would enable them to reach such a conclusion. Also, note that they are talking about chemo for cancer patients, which is used for a different reason (to kill cells) and at much higher doses. Chemo is used to treat Wegs only to take advantage of its toxic side effect: immunosuppression. If anything, Weggies need more antioxidants to manage their high levels of inflammation and cellular damage.

As far as the anticoagulant effect of vitamin E... The article explained that taking large doses of vitamin E is the concern. While vitamin E has anticoagulant properties, they are neither potent nor harmful. Weggies are 23% more likely to develop blood clots. Given that vitamin E both "thins" the blood (slightly) and is anti-inflammatory, it is a good nutrient to help prevent blood clots. Also, if a nutrient has anticoagulant properties and is taken in consistent, normal doses the warfarin dose can be adjusted downward to compensate. I take fish oil which also has very small anticoagulant properties. It allows me to take a smaller amount of warfarin. That's a GOOD thing-- taking more of a nutrient and less of a drug to achieve the desired effect of the drug while receiving the wide-ranging benefits of the nutrient.

It's ironic that doctors tell patients not to take a supplement because it accomplishes the same thing as a drug, while they simultaneously argue that nutritional supplements are useless.

[mishb]

Thankyou for explaining it all in easy to read terms.......very much appreciated.
It takes some of my WOW, thank goodness factor out of it :biggrin1:

[Al]

Thankyou for explaining it all in easy to read terms.......very much appreciated.
It takes some of my WOW, thank goodness factor out of it :biggrin1:

Sangye's discussion points up a couple of things: The mixed agendas and limitations of reasearch--or, in some cases, "research". It also brings home the care one needs to take when analyzing the claims of both the purveyors and the detractors of supplements (and, of course, pharmaceutical products). In the specific case of "Vitamin E", much needs to be unpacked before a meaningful assessment can be made. To begin with, there are many forms of Vitamin E; they do not have a uniform set of properties. Then, too, just like any ingested matter, whether food, drink, or medicine, there are optimal amounts for a therapeutic effect--and amounts that are definitely too much. This is easy to understand in principle; the problem comes in translating that into specific doses. That should depend on many variables, though, in practice, most variables are ignored. The thing about nutritional supplements in general is that there is a large separation between the ideal dosage and too much--unlike medicines, which usually have a much tighter tolerance.

Al

[Sangye]

Thankyou for explaining it all in easy to read terms.......very much appreciated.
It takes some of my WOW, thank goodness factor out of it :biggrin1:
LOL You're welcome!