Re: Best vitamins and supplements for sarcoidosis on methotrexate/planqueniladvair?

[Guest guest]

I truly believe in the usefulness of herbs, but we have to be careful of the vitamin D; sarcoid seems to love it. Like the sun, not everybody has a problem with, but if I am out in it too long it really makes me sick. Thanks for the information on the herbs, now if you don't mind I'm curious...what is pemphigus?

Connie

Subject: Best vitamins and supplements for sarcoidosis on methotrexate/planqueniladvair?To: Neurosarcoidosis Date: Monday, March 2, 2009, 8:47 PM

Hello everyone!I am writing on behalf of a friend. I myself have an autoimmune disorder called pemphigus and take imuran. I have found vitamins and supplements that help w some of the side effects of the harsh medications we have to take. My friend with sarcoidosis has lesions on her face and a few on her lungs that arent as bad. She is not internet savvy and I owe her a favor for her kindness. She is taking methotrexate, plaquenil and advair- all of which I am sure have side effects. For my immune disorder, certain vitamins are more helpful than others, like zinc, vit d, milk thistle caps and the omegas. I learned this from being in support grps for pemphigus. If anyone here takes other natural supplements & herbs to help ease medication symptoms or help with sarcoidosis symptoms, I'd really appreciate the info. My friend is such a kind lady and if her symptpms can be eased, it

would be soo appreciated.thanks so much,wishing wellness to all

[Guest guest]

Thanks for replying

I will be sure to pass on all info to my friend. What are anyone's daily vit

lists? Yes, when I googled sarcoid and vits, it seems vit d isnt good for u

guys. However, for my condition, it is vital- interesting- that's why I soo

believe in research and reading up on all info- traditional and alternative.

Pemphigus is a somewhat rare genetic autoimmune disorder where the body's immune

system attacks the skin. It is not contagious. Basically, skins blisters up,

falls off and does not heal- leaving the body with no skin if there is no

treatment. Upon initial diagnosis in 2005 I ended up in a burn unit for a month.

Had to take prednisone at first, 150 mg. Now, no blisters and on imuran only

prob for several more years til can wean off into full remission. Here is a link

to the pemphigus foundation,

http://www.pemphigus.org/

the people there and the online support group helped to save my life, so I know

first hand how important it is to have others with similar conditions to make it

through. I feel the vitamins recommended by my online group has helped to keep

my pemphigus from flaring so much and I notice a difference when I stop taking

my vits and herbs- tho they arent a cure, just helps alleviate the symptoms

some.

Blessings

>

>

> Subject: Best vitamins and supplements for sarcoidosis on

methotrexate/planqueniladvair?

> To: Neurosarcoidosis

> Date: Monday, March 2, 2009, 8:47 PM

>

>

>

>

>

>

> Hello everyone!

>

> I am writing on behalf of a friend. I myself have an autoimmune

> disorder called pemphigus and take imuran. I have found vitamins and

> supplements that help w some of the side effects of the harsh

> medications we have to take. My friend with sarcoidosis has lesions on

> her face and a few on her lungs that arent as bad. She is not internet

> savvy and I owe her a favor for her kindness. She is taking

> methotrexate, plaquenil and advair- all of which I am sure have side

> effects. For my immune disorder, certain vitamins are more helpful than

> others, like zinc, vit d, milk thistle caps and the omegas. I learned

> this from being in support grps for pemphigus.

>

> If anyone here takes other natural supplements & herbs to help ease

> medication symptoms or help with sarcoidosis symptoms, I'd really

> appreciate the info. My friend is such a kind lady and if her symptpms

> can be eased, it would be soo appreciated.

>

> thanks so much,

> wishing wellness to all

>

[Guest guest]

You have to replace the B vitamins-- particulary Folic Acid when you are on any

of the immunosuppressants. Vit C is a natural anti-inflammatory, so that can

help. Most of us need a calcium/magnesium supplement, as the prednisone

literally sucks the calcium from our bones. This is a huge part of the " inside "

the bone pain.

I've done numerous posts on this issue, and you can find them in the MESSAGE

ARCHIVES-- use vitamins and minerals as your search and you will find them.

In the LINKS you'll also find numerous medical articles and studies to support

the suggestions.

We're happy to answer your questions-- and right now, all the moderators are

having a tough time of it-- we too are sick with this disease, so we're not on

as often as usual. I know Darlene and Rose are both having computer problems,

and so I'll be trying to get online more often.

Take care,

Tracie

NS Co-owner/moderator

>

> Hello everyone!

>

> I am writing on behalf of a friend. I myself have an autoimmune

> disorder called pemphigus and take imuran. I have found vitamins and

> supplements that help w some of the side effects of the harsh

> medications we have to take. My friend with sarcoidosis has lesions on

> her face and a few on her lungs that arent as bad. She is not internet

> savvy and I owe her a favor for her kindness. She is taking

> methotrexate, plaquenil and advair- all of which I am sure have side

> effects. For my immune disorder, certain vitamins are more helpful than

> others, like zinc, vit d, milk thistle caps and the omegas. I learned

> this from being in support grps for pemphigus.

>

> If anyone here takes other natural supplements & herbs to help ease

> medication symptoms or help with sarcoidosis symptoms, I'd really

> appreciate the info. My friend is such a kind lady and if her symptpms

> can be eased, it would be soo appreciated.

>

> thanks so much,

> wishing wellness to all

>

[Guest guest]

Thank you for explaining, that is a brutal illness. I am glad your headed toward the end of the tunnel, ( & thankfully there won't be a train).

Sarcoid at times messes with our skin, but nothing like what your describing. I have systemic sarc (we always have to say biopsy confirmed), so my aggrevating little critters like to chew on lots of things. We also have to tell people we are not contagious. I bet you also get the "you have what?.... at the ER too". Don't you feel confident in your medical care when you hear that.

I hate that your friend has come in contact with our beast, but they will find a great deal of help, support, and friendship at this site. There have been many times they have helped me understand what I was going through, helped me know where to go for help, and given the advice I couldn't find anywhere else. They are also the ones I talk to when I don't want to worry my family, or my family doesn't understand what is happening to me. It would be alot harder at times, if it were not for them.

Take care, and hang in there.....Connie

Subject: Re: Best vitamins and supplements for sarcoidosis on methotrexate/planqueniladvair?To: Neurosarcoidosis Date: Monday, March 9, 2009, 3:27 AM

Thanks for replying :)I will be sure to pass on all info to my friend. What are anyone's daily vit lists? Yes, when I googled sarcoid and vits, it seems vit d isnt good for u guys. However, for my condition, it is vital- interesting- that's why I soo believe in research and reading up on all info- traditional and alternative. Pemphigus is a somewhat rare genetic autoimmune disorder where the body's immune system attacks the skin. It is not contagious. Basically, skins blisters up, falls off and does not heal- leaving the body with no skin if there is no treatment. Upon initial diagnosis in 2005 I ended up in a burn unit for a month. Had to take prednisone at first, 150 mg. Now, no blisters and on imuran only prob for several more years til can wean off into full remission. Here is a link to the pemphigus foundation, http://www.pemphigu s.org/the people

there and the online support group helped to save my life, so I know first hand how important it is to have others with similar conditions to make it through. I feel the vitamins recommended by my online group has helped to keep my pemphigus from flaring so much and I notice a difference when I stop taking my vits and herbs- tho they arent a cure, just helps alleviate the symptoms some.Blessings> > From: sacred_dimensionson line <sacred_dimensionso nline@... >> Subject: Best vitamins and supplements for sarcoidosis on methotrexate/ planqueniladvair ?> To: Neurosarcoidosis@ yahoogroups. com> Date: Monday, March 2, 2009, 8:47 PM> > > > > > > Hello everyone!> > I am writing on behalf of a friend. I myself have an autoimmune > disorder called pemphigus and take imuran. I have found vitamins and > supplements that help w some of the side effects of the harsh > medications we have to take. My friend with sarcoidosis has lesions on > her face and a few on her lungs that arent as bad. She is not internet > savvy and I

owe her a favor for her kindness. She is taking > methotrexate, plaquenil and advair- all of which I am sure have side > effects. For my immune disorder, certain vitamins are more helpful than > others, like zinc, vit d, milk thistle caps and the omegas. I learned > this from being in support grps for pemphigus. > > If anyone here takes other natural supplements & herbs to help ease > medication symptoms or help with sarcoidosis symptoms, I'd really > appreciate the info. My friend is such a kind lady and if her symptpms > can be eased, it would be soo appreciated.> > thanks so much,> wishing wellness to all>