New to all of this.

[Guest guest]

Hi,

I am new to all of this....I just finished my master's degree in teaching in

May. In July I got laid off from my teaching job (I worked with sexual

offenders ages 10 - 20). I began to work on my resume to look for work when I

woke up with almost no sight in my left eye. This was really bad since my other

eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on

IV steroids for 3 days and vision in left eye got better...but a week later

(off steroids)my eye started to hurt and then my eye lid started to droop. Went

back to eye doctor who said my vision was worse than when I started. He got me

in with a neur. who gave me an MRI and CT. He and the radiologist disagreed

with my MRI, doctor says I have NS. My B and D vitamins he says are low and my

CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My

eye droop is almost gone, my vision is coming back...I have recently had

tingling in my hands and feet on and off during the day. I am not really sure I

have NS...I don't want to have it that is for sure. I am a bit

nervous...reading everything seems to be overwhelming and I want to know if I am

doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free

diet and supplementing also with Fish oil, and Acai. The steroids hardly bother

me as I get up early to take it and have been exercising everyday = along with

eating right. If you respond please don't scare me with worse case scenarios -

I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there

anything I need to be doing right away or anything I need to know. This all

started on Aug. 24th

[Guest guest]

Hi,

Welcome to our family. We are so glad you found us but sorry you had to

under these circumstances. We hope you will find some answers here. We

have 600+ members and many are very knowledgeable about Sarcoidosis

and Neurosarcoidosis and are willing to help and explain what they know. The

only thing is that you need to give all of us a couple of days to answer as we are

ALL sick or are caretakers for someone who is sick and it will take time to answer

your posts and questions. Many are more than willing to help, so please feel free

to ask questions. You can also check the archives.......I am in the middle of cleaning

out some of the messages that do not pertain to this disease --- so that the Search

will work faster and the info will be easier to find.

Neurosarcoidosis and Sarcoidosis are like the other autoimmune diseases -- hard

to diagnosis. This is frustrating at times but we all experience it and you have to stay

focused and keep looking. It took 3 years for the Doctors to diagnose my Sarc and

by the the old Sarc Monster had just about destroyed my lungs! I think the Doctors

are getting better about discovering Sarc and Neuro though.

Just know that we are all here to help you and please ask questions..........

Again, welcome to the list....

Hugs,DarleneNS Co-Owner/Moderator

New to all of this.

Hi,I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th

[Guest guest]

No scarey stuff, but Vitamin D and Sarc don't get along. Alot of us have trouble with sun exposure because of this. There are many options other than prednisone when you get more stable. My neuro also recommended Lipoic Acid to help with the neuro-nerve damage Sarc does. There are others in this group who have specifically had issues with their eyes, and they can give a great deal of useful info. I'm so sorry you have needed to come to our group, but Welcome...you are among friends.

To: Neurosarcoidosis Sent: Sun, October 3, 2010 7:53:08 PMSubject: New to all of this.

Hi,I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had tingling in my hands and

feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th

[Guest guest]

Hi, Darlene has done an excellent job of welcoming & orienting you to the group. It sounds like your neuro & opthamol. are pretty knowledgeable. I would think that you may need another drug added to the Pred. Pred can work wonders short-term, but when it's stopped the Sarc Monster often comes back, with a vengeance and in other organ systems. Do you mind saying how old you are? Here is an excerpt from one of Tracie's (co-owner) messages, describing the different categories of drugs used for sarc/NS. You might want to print this out & discuss it with your neuro.

Pred is great in the short run-- but long term you will need to look at DMARDS-- Disease Modifing AntiRheumatic Drugs, Imuran, Arava, Methotrexate, Plaquenil-- or BRM's-- Biological Response Modifiers--Enbrel, Humira, Cellcept, Remicade.

These are steroid sparing, and what will happen is that as you wean off the pred, you add one med at a time, until you get a combination of what works for you.

For me, it's been the MTX, Plaquenil and Remicade that has been the best combo. MTX helped with cognition and joint pain, Plaquenil helped with lung inflammation and memory, and the Remicade has helped keep the other symptoms under control-- and has taken away the inside the bone pain, along with the spinal arthritis issues.

Here is a website that explains these drugs in more detail: www.arthritis.org

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Mon, 4 Oct 2010 02:53:08 +0000> Subject: New to all of this.> > Hi,> > I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This all started on Aug. 24th> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Why doesn't the D and Sarc. get along? I am taking alot - 50,000 units every

other day for 10 days then once a week. I watched a really interesting topic on

you tube about the great stuff vitamin D3 can do for people?

I see the neur. today. My vision so far is coming back a lot better in my left

eye (1 month on the pred.) but still on 100 mg per day of the pred. Not sure

what he will recommend.

Thanks for any information - I am specifically interested in more holistic ideas

and dietary ideas. I am on the Inflammation Free Diet and over all health feel

more energetic than I have in a long time.

>

> No scarey stuff, but Vitamin D and Sarc don't get along.  Alot of us have

> trouble with sun exposure because of this.  There are many options other than

> prednisone when you get more stable.  My neuro also recommended Lipoic Acid

to

> help with the neuro-nerve damage Sarc does.  There are others in this group

who

> have specifically had issues with their eyes, and they can give a great deal

of

> useful info.  I'm so sorry you have needed to come to our group, but

> Welcome...you are among friends.

>

>

>

>

> ________________________________

>

> To: Neurosarcoidosis

> Sent: Sun, October 3, 2010 7:53:08 PM

> Subject: New to all of this.

>

>  

> Hi,

>

> I am new to all of this....I just finished my master's degree in teaching in

> May. In July I got laid off from my teaching job (I worked with sexual

offenders

> ages 10 - 20). I began to work on my resume to look for work when I woke up

with

> almost no sight in my left eye. This was really bad since my other eye (right

> eye) has bad astigmatism and I am almost blind in that eye. I was on IV

steroids

> for 3 days and vision in left eye got better...but a week later (off

steroids)my

> eye started to hurt and then my eye lid started to droop. Went back to eye

> doctor who said my vision was worse than when I started. He got me in with a

> neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI,

> doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5

I

> am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is

> almost gone, my vision is coming back...I have recently had tingling in my

hands

> and feet on and off during the day. I am not really sure I have NS...I don't

> want to have it that is for sure. I am a bit nervous...reading everything

seems

> to be overwhelming and I want to know if I am doing all that I need to do. I

am

> taking B6 and D3 - on the Inflammation Free diet and supplementing also with

> Fish oil, and Acai. The steroids hardly bother me as I get up early to take it

> and have been exercising everyday = along with eating right. If you respond

> please don't scare me with worse case scenarios - I live in Wisconsin and am

> seeing an eye doctor and an neurologist. Is there anything I need to be doing

> right away or anything I need to know. This all started on Aug. 24th

>

[Guest guest]

Thanks so much for forwarding the information. I am 44 and a female. Married

for 23 great, terrific years and today is my son's 17th birthday. I have such

blessings in my life. Thanks again for forwarding the information - I have

doctor's appt today so I will look it over and discuss it with him.

>

>

> Hi, Darlene has done an excellent job of welcoming & orienting you to the

group. It sounds like your neuro & opthamol. are pretty knowledgeable. I would

think that you may need another drug added to the Pred. Pred can work wonders

short-term, but when it's stopped the Sarc Monster often comes back, with a

vengeance and in other organ systems. Do you mind saying how old you are?

>

> Here is an excerpt from one of Tracie's (co-owner) messages, describing the

different categories of drugs used for sarc/NS. You might want to print this

out & discuss it with your neuro.

>

>

> Pred is great in the short run-- but long term you will need to look at

DMARDS-- Disease Modifing AntiRheumatic Drugs, Imuran, Arava, Methotrexate,

Plaquenil-- or BRM's-- Biological Response Modifiers--Enbrel, Humira, Cellcept,

Remicade.

> These are steroid sparing, and what will happen is that as you wean off the

pred, you add one med at a time, until you get a combination of what works for

you.

> For me, it's been the MTX, Plaquenil and Remicade that has been the best

combo. MTX helped with cognition and joint pain, Plaquenil helped with lung

inflammation and memory, and the Remicade has helped keep the other symptoms

under control-- and has taken away the inside the bone pain, along with the

spinal arthritis issues.

>

>

> Here is a website that explains these drugs in more detail:

www.arthritis.org

>

>

> Ramblin' Rose

> Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

> > To: Neurosarcoidosis

> > From: k.przy@...

> > Date: Mon, 4 Oct 2010 02:53:08 +0000

> > Subject: New to all of this.

> >

> > Hi,

> >

> > I am new to all of this....I just finished my master's degree in teaching in

May. In July I got laid off from my teaching job (I worked with sexual offenders

ages 10 - 20). I began to work on my resume to look for work when I woke up with

almost no sight in my left eye. This was really bad since my other eye (right

eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids

for 3 days and vision in left eye got better...but a week later (off steroids)my

eye started to hurt and then my eye lid started to droop. Went back to eye

doctor who said my vision was worse than when I started. He got me in with a

neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI,

doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I

am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is

almost gone, my vision is coming back...I have recently had tingling in my hands

and feet on and off during the day. I am not really sure I have NS...I don't

want to have it that is for sure. I am a bit nervous...reading everything seems

to be overwhelming and I want to know if I am doing all that I need to do. I am

taking B6 and D3 - on the Inflammation Free diet and supplementing also with

Fish oil, and Acai. The steroids hardly bother me as I get up early to take it

and have been exercising everyday = along with eating right. If you respond

please don't scare me with worse case scenarios - I live in Wisconsin and am

seeing an eye doctor and an neurologist. Is there anything I need to be doing

right away or anything I need to know. This all started on Aug. 24th

> >

> >

> >

> > ------------------------------------

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> >

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

My pulm called a Sarcoid specialist up north and he recommended Chloroquine 500 mg, and just 10 mg of pred (my adrenal gland isn't working and with the little bit of pred I get deathly ill) My blood sugars have improved immensely and the Chloroquine seems to be really working. I am allergic to plaquinil because of the sulfa, and methotrexate and immuran had impossible side affects. She add cholchisine recently to help with joint pain.

To: neurosarcoidosis Sent: Wed, October 6, 2010 7:24:35 PMSubject: RE: New to all of this.

Hi, Darlene has done an excellent job of welcoming & orienting you to the group. It sounds like your neuro & opthamol. are pretty knowledgeable. I would think that you may need another drug added to the Pred. Pred can work wonders short-term, but when it's stopped the Sarc Monster often comes back, with a vengeance and in other organ systems. Do you mind saying how old you are? Here is an excerpt from one of Tracie's (co-owner) messages, describing the different categories of drugs used for sarc/NS. You might want to print this out & discuss it with your neuro.

Pred is great in the short run-- but long term you will need to look at DMARDS-- Disease Modifing AntiRheumatic Drugs, Imuran, Arava, Methotrexate, Plaquenil-- or BRM's-- Biological Response Modifiers--Enbrel, Humira, Cellcept, Remicade.

These are steroid sparing, and what will happen is that as you wean off the pred, you add one med at a time, until you get a combination of what works for you.

For me, it's been the MTX, Plaquenil and Remicade that has been the best combo. MTX helped with cognition and joint pain, Plaquenil helped with lung inflammation and memory, and the Remicade has helped keep the other symptoms under control-- and has taken away the inside the bone pain, along with the spinal arthritis issues.

Here is a website that explains these drugs in more detail: www.arthritis.org

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Mon, 4 Oct 2010 02:53:08 +0000> Subject: New to all of this.> > Hi,> > I am new to all of this....I just finished my master's degree in teaching in May. In July I got laid off from my teaching job (I worked with sexual offenders ages 10 - 20). I began to work on my resume to look for work when I woke up with almost no sight in my left eye. This was really bad since my other eye (right eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids for 3 days and vision in left eye got better...but a week later (off steroids)my eye started to hurt and then my eye lid started to droop. Went back to eye doctor who said my vision was worse than when I started. He got me in with a neur. who gave me an

MRI and CT. He and the radiologist disagreed with my MRI, doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is almost gone, my vision is coming back...I have recently had tingling in my hands and feet on and off during the day. I am not really sure I have NS...I don't want to have it that is for sure. I am a bit nervous...reading everything seems to be overwhelming and I want to know if I am doing all that I need to do. I am taking B6 and D3 - on the Inflammation Free diet and supplementing also with Fish oil, and Acai. The steroids hardly bother me as I get up early to take it and have been exercising everyday = along with eating right. If you respond please don't scare me with worse case scenarios - I live in Wisconsin and am seeing an eye doctor and an neurologist. Is there anything I need to be doing right away or anything I need to know. This

all started on Aug. 24th> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Vitamin D dysregulation

Sarcoidosis frequently causes an increase in vitamin D production outside the kidney.[25] Macrophages inside the granulomas convert vitamin D to its active form, resulting in elevated levels of the hormone 1,25-dihydroxyvitamin D and symptoms of hypervitaminosis D that may include fatigue, lack of strength or energy, irritability, metallic taste, temporary memory loss or cognitive problems. Physiological compensatory responses (e.g., suppression of the parathyroid hormone levels) may mean the patient does not develop frank hypercalcemia. This condition may be aggravated by high levels of estradiol and prolactin such as in pregnancy, leading to hypercalciuria and/or compensatory hypoparathyroidism.[26] High levels of Vitamin D are also implicated in immune-system dysfunctions which tie into the sarcoid condition.

2nd Article

Question:

I had a vitamin D level of 21.6 so was started on 50,000 IU of Drisdol. I have systemic sarcoid (even have an AICD for cardiac sarcoid). I thought vitamin D was something a sarcoid pt had to be very careful with as far as too much. My calcium level is 10. Is 50,000 IU qd a concern? Thank you for your time.

Answer:

The role of vitamin D in sarcoidosis is, as you suggest, controversial. Some believe that vitamin D deficiency is associated with incomplete granulomatous responses (unresolved inflammation) while others believe that vitamin D triggers activation of sarcoidosis. The latter is based on the fact that some patients with sarcoidosis produce large amounts of active vitamin D which leads to calcium overload. Despite the severity of your sarcoidosis, you apparently do not produce excess vitamin D. In fact, you are deficient in this vitamin. Your doctors have to help you determine if the risk of low vitamin D (osteoporosis) exceeds the risk of further activating your sarcoidosis (this risk is hard to determine based on what we currently know). The risk of osteoporosis in the setting of vitamin D deficiency is well-established. The risk of normalizing low vitamin D levels in the setting of sarcoidosis is not known. Thus, it is reasonable to reduce your risk of

osteoporosis (vitamin D replacement), but I would avoid excessive vitamin D intake. You should consult your doctor regarding the proper replacement dose, since they will be monitoring your response to treatment.

To: Neurosarcoidosis Sent: Thu, October 7, 2010 9:48:35 AMSubject: Re: New to all of this.

Why doesn't the D and Sarc. get along? I am taking alot - 50,000 units every other day for 10 days then once a week. I watched a really interesting topic on you tube about the great stuff vitamin D3 can do for people?I see the neur. today. My vision so far is coming back a lot better in my left eye (1 month on the pred.) but still on 100 mg per day of the pred. Not sure what he will recommend.Thanks for any information - I am specifically interested in more holistic ideas and dietary ideas. I am on the Inflammation Free Diet and over all health feel more energetic than I have in a long time.>> No scarey stuff, but Vitamin D and Sarc don't get along. Alot of us have > trouble with sun

exposure because of this. There are many options other than > prednisone when you get more stable. My neuro also recommended Lipoic Acid to > help with the neuro-nerve damage Sarc does. There are others in this group who > have specifically had issues with their eyes, and they can give a great deal of > useful info. I'm so sorry you have needed to come to our group, but > Welcome...you are among friends.> > > > > ________________________________> > To: Neurosarcoidosis > Sent: Sun, October 3, 2010 7:53:08 PM> Subject: New to all of this.> >  > Hi,> > I am new to all of this....I just

finished my master's degree in teaching in > May. In July I got laid off from my teaching job (I worked with sexual offenders > ages 10 - 20). I began to work on my resume to look for work when I woke up with > almost no sight in my left eye. This was really bad since my other eye (right > eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids > for 3 days and vision in left eye got better...but a week later (off steroids)my > eye started to hurt and then my eye lid started to droop. Went back to eye > doctor who said my vision was worse than when I started. He got me in with a > neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, > doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I > am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is > almost gone, my vision is coming

back...I have recently had tingling in my hands > and feet on and off during the day. I am not really sure I have NS...I don't > want to have it that is for sure. I am a bit nervous...reading everything seems > to be overwhelming and I want to know if I am doing all that I need to do. I am > taking B6 and D3 - on the Inflammation Free diet and supplementing also with > Fish oil, and Acai. The steroids hardly bother me as I get up early to take it > and have been exercising everyday = along with eating right. If you respond > please don't scare me with worse case scenarios - I live in Wisconsin and am > seeing an eye doctor and an neurologist. Is there anything I need to be doing > right away or anything I need to know. This all started on Aug. 24th>

[Guest guest]

Connie,

Great information!

I believe I remember reading that they have found Vit D3 in the

granulomas...don't recall now which article it was in, but I do remember it

because prior to my Sarc flaring up I was taking a Vit D3 supplement and

wondered if that contributed to my flare. I did have my levels checked when

they first diagnosed me and they were slightly low, so I do go out in the sun to

try to make sure I maintain adequate levels. The only issues I've had with the

sun...which I believe are/were Sarc related...is an itchy rash/blisters which

typically occured in the spring/summer...but have since gone away once I stopped

drinking diet sodas/juices.

I'm guessing I should have my Vit D/calcium levels re-checked on a regular

basis...not something my Drs. have recommended yet.

Thanks for your post!

Deb Z.

Michigan

>

> Vitamin D dysregulation

> Sarcoidosis frequently causes an increase in vitamin D production outside the

> kidney.[25] Macrophages inside the granulomas convert vitamin D to its active

> form, resulting in elevated levels of the hormone 1,25-dihydroxyvitamin D and

> symptoms of hypervitaminosis D that may include fatigue, lack of strength or

> energy, irritability, metallic taste, temporary memory loss or cognitive

> problems. Physiological compensatory responses (e.g., suppression of the

> parathyroid hormone levels) may mean the patient does not develop frank

> hypercalcemia. This condition may be aggravated by high levels of estradiol

and

> prolactin such as in pregnancy, leading to hypercalciuria and/or compensatory

> hypoparathyroidism.[26] High levels of Vitamin D are also implicated in

> immune-system dysfunctions which tie into the sarcoid condition.

>  

> 2nd Article

> Question:

> I had a vitamin D level of 21.6 so was started on 50,000 IU of Drisdol. I have

> systemic sarcoid (even have an AICD for cardiac sarcoid). I thought vitamin D

> was something a sarcoid pt had to be very careful with as far as too much. My

> calcium level is 10. Is 50,000 IU qd a concern? Thank you for your time.

>

> Answer:

> The role of vitamin D in sarcoidosis is, as you suggest, controversial. Some

> believe that vitamin D deficiency is associated with incomplete granulomatous

> responses (unresolved inflammation) while others believe that vitamin D

triggers

> activation of sarcoidosis. The latter is based on the fact that some patients

> with sarcoidosis produce large amounts of active vitamin D which leads to

> calcium overload. Despite the severity of your sarcoidosis, you apparently do

> not produce excess vitamin D. In fact, you are deficient in this vitamin. Your

> doctors have to help you determine if the risk of low vitamin D (osteoporosis)

> exceeds the risk of further activating your sarcoidosis (this risk is hard to

> determine based on what we currently know). The risk of osteoporosis in the

> setting of vitamin D deficiency is well-established. The risk of normalizing

low

> vitamin D levels in the setting of sarcoidosis is not known. Thus, it is

> reasonable to reduce your risk of osteoporosis (vitamin D replacement), but I

> would avoid excessive vitamin D intake. You should consult your doctor

regarding

> the proper replacement dose, since they will be monitoring your response to

> treatment.

>

[Guest guest]

Connie, what is the source for these articles on Vit D?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Sat, 9 Oct 2010 17:33:42 -0700Subject: Re: Re: New to all of this.

Vitamin D dysregulation Sarcoidosis frequently causes an increase in vitamin D production outside the kidney.[25] Macrophages inside the granulomas convert vitamin D to its active form, resulting in elevated levels of the hormone 1,25-dihydroxyvitamin D and symptoms of hypervitaminosis D that may include fatigue, lack of strength or energy, irritability, metallic taste, temporary memory loss or cognitive problems. Physiological compensatory responses (e.g., suppression of the parathyroid hormone levels) may mean the patient does not develop frank hypercalcemia. This condition may be aggravated by high levels of estradiol and prolactin such as in pregnancy, leading to hypercalciuria and/or compensatory hypoparathyroidism.[26] High levels of Vitamin D are also implicated in immune-system dysfunctions which tie into the sarcoid condition.

2nd Article

Question:

I had a vitamin D level of 21.6 so was started on 50,000 IU of Drisdol. I have systemic sarcoid (even have an AICD for cardiac sarcoid). I thought vitamin D was something a sarcoid pt had to be very careful with as far as too much. My calcium level is 10. Is 50,000 IU qd a concern? Thank you for your time.

Answer:

The role of vitamin D in sarcoidosis is, as you suggest, controversial. Some believe that vitamin D deficiency is associated with incomplete granulomatous responses (unresolved inflammation) while others believe that vitamin D triggers activation of sarcoidosis. The latter is based on the fact that some patients with sarcoidosis produce large amounts of active vitamin D which leads to calcium overload. Despite the severity of your sarcoidosis, you apparently do not produce excess vitamin D. In fact, you are deficient in this vitamin. Your doctors have to help you determine if the risk of low vitamin D (osteoporosis) exceeds the risk of further activating your sarcoidosis (this risk is hard to determine based on what we currently know). The risk of osteoporosis in the setting of vitamin D deficiency is well-established. The risk of normalizing low vitamin D levels in the setting of sarcoidosis is not known. Thus, it is reasonable to reduce your risk of osteoporosis (vitamin D replacement), but I would avoid excessive vitamin D intake. You should consult your doctor regarding the proper replacement dose, since they will be monitoring your response to treatment.

To: Neurosarcoidosis Sent: Thu, October 7, 2010 9:48:35 AMSubject: Re: New to all of this.

Why doesn't the D and Sarc. get along? I am taking alot - 50,000 units every other day for 10 days then once a week. I watched a really interesting topic on you tube about the great stuff vitamin D3 can do for people?I see the neur. today. My vision so far is coming back a lot better in my left eye (1 month on the pred.) but still on 100 mg per day of the pred. Not sure what he will recommend.Thanks for any information - I am specifically interested in more holistic ideas and dietary ideas. I am on the Inflammation Free Diet and over all health feel more energetic than I have in a long time.>> No scarey stuff, but Vitamin D and Sarc don't get along. Alot of us have > trouble with sun exposure because of this. There are many options other than > prednisone when you get more stable. My neuro also recommended Lipoic Acid to > help with the neuro-nerve damage Sarc does. There are others in this group who > have specifically had issues with their eyes, and they can give a great deal of > useful info. I'm so sorry you have needed to come to our group, but > Welcome...you are among friends.> > > > > ________________________________> > To: Neurosarcoidosis > Sent: Sun, October 3, 2010 7:53:08 PM> Subject: New to all of this.> >  > Hi,> > I am new to all of this....I just finished my master's degree in teaching in > May. In July I got laid off from my teaching job (I worked with sexual offenders > ages 10 - 20). I began to work on my resume to look for work when I woke up with > almost no sight in my left eye. This was really bad since my other eye (right > eye) has bad astigmatism and I am almost blind in that eye. I was on IV steroids > for 3 days and vision in left eye got better...but a week later (off steroids)my > eye started to hurt and then my eye lid started to droop. Went back to eye > doctor who said my vision was worse than when I started. He got me in with a > neur. who gave me an MRI and CT. He and the radiologist disagreed with my MRI, > doctor says I have NS. My B and D vitamins he says are low and my CRP is 12.5 I > am on 100 mg of Pred. (steroids) a day now for the last month. My eye droop is > almost gone, my vision is coming back...I have recently had tingling in my hands > and feet on and off during the day. I am not really sure I have NS...I don't > want to have it that is for sure. I am a bit nervous...reading everything seems > to be overwhelming and I want to know if I am doing all that I need to do. I am > taking B6 and D3 - on the Inflammation Free diet and supplementing also with > Fish oil, and Acai. The steroids hardly bother me as I get up early to take it > and have been exercising everyday = along with eating right. If you respond > please don't scare me with worse case scenarios - I live in Wisconsin and am > seeing an eye doctor and an neurologist. Is there anything I need to be doing > right away or anything I need to know. This all started on Aug. 24th>

[Guest guest]

Connie, I want to thank you for sharing so much good information & support. It is appreciated!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Sun, 10 Oct 2010 04:18:16 +0000> Subject: Re: New to all of this.> > Connie,> > Great information!> > I believe I remember reading that they have found Vit D3 in the granulomas...don't recall now which article it was in, but I do remember it because prior to my Sarc flaring up I was taking a Vit D3 supplement and wondered if that contributed to my flare. I did have my levels checked when they first diagnosed me and they were slightly low, so I do go out in the sun to try to make sure I maintain adequate levels. The only issues I've had with the sun...which I believe are/were Sarc related...is an itchy rash/blisters which typically occured in the spring/summer...but have since gone away once I stopped drinking diet sodas/juices.> > I'm guessing I should have my Vit D/calcium levels re-checked on a regular basis...not something my Drs. have recommended yet.> > Thanks for your post!> > Deb Z.> Michigan> > > >> > Vitamin D dysregulation > > Sarcoidosis frequently causes an increase in vitamin D production outside the > > kidney.[25] Macrophages inside the granulomas convert vitamin D to its active > > form, resulting in elevated levels of the hormone 1,25-dihydroxyvitamin D and > > symptoms of hypervitaminosis D that may include fatigue, lack of strength or > > energy, irritability, metallic taste, temporary memory loss or cognitive > > problems. Physiological compensatory responses (e.g., suppression of the > > parathyroid hormone levels) may mean the patient does not develop frank > > hypercalcemia. This condition may be aggravated by high levels of estradiol and > > prolactin such as in pregnancy, leading to hypercalciuria and/or compensatory > > hypoparathyroidism.[26] High levels of Vitamin D are also implicated in > > immune-system dysfunctions which tie into the sarcoid condition.> > Â > > 2nd Article> > Question:> > I had a vitamin D level of 21.6 so was started on 50,000 IU of Drisdol. I have > > systemic sarcoid (even have an AICD for cardiac sarcoid). I thought vitamin D > > was something a sarcoid pt had to be very careful with as far as too much. My > > calcium level is 10. Is 50,000 IU qd a concern? Thank you for your time. > > > > Answer:> > The role of vitamin D in sarcoidosis is, as you suggest, controversial. Some > > believe that vitamin D deficiency is associated with incomplete granulomatous > > responses (unresolved inflammation) while others believe that vitamin D triggers > > activation of sarcoidosis. The latter is based on the fact that some patients > > with sarcoidosis produce large amounts of active vitamin D which leads to > > calcium overload. Despite the severity of your sarcoidosis, you apparently do > > not produce excess vitamin D. In fact, you are deficient in this vitamin. Your > > doctors have to help you determine if the risk of low vitamin D (osteoporosis) > > exceeds the risk of further activating your sarcoidosis (this risk is hard to > > determine based on what we currently know). The risk of osteoporosis in the > > setting of vitamin D deficiency is well-established. The risk of normalizing low > > vitamin D levels in the setting of sarcoidosis is not known. Thus, it is > > reasonable to reduce your risk of osteoporosis (vitamin D replacement), but I > > would avoid excessive vitamin D intake. You should consult your doctor regarding > > the proper replacement dose, since they will be monitoring your response to > > treatment.> >> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >