RE: Hello? Hello? Anybody there?

[Guest guest]

Hi, yes, I'm here ... just rather spaced out and zombie-like on Lyrica ... I

gather it can take a few weeks to get over this particularly annoying side

effect?

I'm a bit worried, my vision loss seems to be increasing again, on the lower

dose of pred (I'm on 40 instead of 60), my left eye in particular. Crap

Cheers,

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http://sutherland-studios.com.au

Dummies author :

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> Guys, this list has been way too quiet. Please check in to let us know how

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> Ramblin' Rose

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[Guest guest]

I'm here getting ready to move into my own place. yeah

Jackie

Hello? Hello? Anybody there?

Guys, this list has been way too quiet. Please check in to let us know how you are doing--just a quick note is fine.

Ramblin' RoseModerator

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[Guest guest]

, what dose of Lyrica are you taking? When I first started it a few years ago, I was supposed to take 150mg twice a day. At that time I couldn't take the morning dose; I was just zonked out all day. So I took the 150 at night for a couple of years. The neuropathy symptoms (feet) worsened & I started taking an extra 75mg at night. That helped for about a year, then I decided to try the 150 twice a day again. I guess I'd built up a tolerance, because I had no problem with it & it did help a bit. A couple of months ago I decided to try stopping the Lyrica, wondering if I would really notice a difference; oh yeah! I lasted a week before I gave in & restarted it. So the point to all this is that you may have to back the dose down & let your body adjust. It's that dang balance between the disease & the treatment; pain or zombie state.

Did you say that you had seen a neuro-opthalmologist? Have you advised him of the worsening vision? Maybe it's time to try adding another med to the mix.

I typed "treatment of ocular sarcoidosis" in my search engine & got this doc's website. You can probably skim through & see if any of this describes your visual problems. Other than the steroids, he mentions chemo for neurological involvement. I'm not clear on whether that is solely to treat the neuro symptoms, or might help the vision. This is an older site--1996, I think.

http://www.sarcoidosisnetwork.org/documents/sarcoideye.html

I found a study by Baughman in Cincinnati, Ohio in 1995 that tried Enbrel, without success.

Another article mentions Mtx & other immunosuppressants/modifiers with mixed success: http://emedicine.medscape.com/article/1229262-treatmentYou may have already tried researching ocular sarc; forgive me if you are way ahead of me. I always hate to assume, because we often just don't think of everything ourselves. I hope that you can get some answers on what's happening & your options for treatment. Let us know what happens.

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

> To: Neurosarcoidosis > Date: Tue, 16 Nov 2010 14:37:53 +1100> Subject: Re: Hello? Hello? Anybody there?> > Hi, yes, I'm here ... just rather spaced out and zombie-like on Lyrica ... I gather it can take a few weeks to get over this particularly annoying side effect?> > I'm a bit worried, my vision loss seems to be increasing again, on the lower dose of pred (I'm on 40 instead of 60), my left eye in particular. Crap > > Cheers,> > > > .......................................................................................................> http://sutherland-studios.com.au> > Dummies author :> http://tinyurl.com/CodesandCryptograms> http://tinyurl.com/WordSearches> > .......................................................................................................> > > > > Guys, this list has been way too quiet. Please check in to let us know how you are doing--just a quick note is fine.> > > > Ramblin' Rose> > Moderator> > > > )> > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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]

> , what dose of Lyrica are you taking?

Lowest dose for starters, 75 mg - gradually I'll get to 150 mg I guess.

> When I first started it a few years ago, I was supposed to take 150mg twice a

day. At that time I couldn't take the morning dose; I was just zonked out all

day. So I took the 150 at night for a couple of years. The neuropathy symptoms

(feet) worsened & I started taking an extra 75mg at night. That helped for

about a year, then I decided to try the 150 twice a day again. I guess I'd

built up a tolerance, because I had no problem with it & it did help a bit. A

couple of months ago I decided to try stopping the Lyrica, wondering if I would

really notice a difference; oh yeah! I lasted a week before I gave in &

restarted it.

Yeah, I guess the acid test is whether it makes a difference to the peripheral

neuropathy for me (bad foot pain like you). No major noticeable difference yet,

but it's only been less than a week.

> So the point to all this is that you may have to back the dose down & let

your body adjust. It's that dang balance between the disease & the treatment;

pain or zombie state.

Yeah, it's a bugger isn't it!

> Did you say that you had seen a neuro-opthalmologist? Have you advised him of

the worsening vision? Maybe it's time to try adding another med to the mix.

Yes, he's my main neurologist, and is wonderful. I haven't advised him of the

change yet - I might wait until I do my next eye exam, which is in a few weeks

time. I'm just doing some Amsler grids, which only assess central vision, so I'm

not sure if what I'm noticing is significant or not.

>

> I typed " treatment of ocular sarcoidosis " in my search engine & got this doc's

website. You can probably skim through & see if any of this describes your

visual problems. Other than the steroids, he mentions chemo for neurological

involvement.

All my Drs are talking about putting me on cyclophosphamide (chemo agent) and

Imuran, I suspect that will be the next step once I see them again in December.

Thanks for the links, I'll check them out

> I'm not clear on whether that is solely to treat the neuro symptoms, or might

help the vision. This is an older site--1996, I think.

> http://www.sarcoidosisnetwork.org/documents/sarcoideye.html

>

> I found a study by Baughman in Cincinnati, Ohio in 1995 that tried Enbrel,

without success.

>

> Another article mentions Mtx & other immunosuppressants/modifiers with mixed

success: http://emedicine.medscape.com/article/1229262-treatment

>

> You may have already tried researching ocular sarc; forgive me if you are way

ahead of me. I always hate to assume, because we often just don't think of

everything ourselves. I hope that you can get some answers on what's happening

& your options for treatment. Let us know what happens.

Thanks very much Yeah, I do a fair bit of research (have a science

background, and am married to an astrophysicist, so science reading / knowledge

is fairly prevalent in our household).

I'll let you know what happens (if anything) ... I'm certainly getting to the

point where I'm not assuming that any improvement in vision is going to last :/

xo

>

>

> Ramblin' Rose

> Moderator

>

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

>

>

>

>

> > To: Neurosarcoidosis

> > From: denise@...

> > Date: Tue, 16 Nov 2010 14:37:53 +1100

> > Subject: Re: Hello? Hello? Anybody there?

> >

> > Hi, yes, I'm here ... just rather spaced out and zombie-like on Lyrica ... I

gather it can take a few weeks to get over this particularly annoying side

effect?

> >

> > I'm a bit worried, my vision loss seems to be increasing again, on the lower

dose of pred (I'm on 40 instead of 60), my left eye in particular. Crap

> >

> > Cheers,

> >

> >

> >

> >

.................................................................................\

........................

> > http://sutherland-studios.com.au

> >

> > Dummies author :

> > http://tinyurl.com/CodesandCryptograms

> > http://tinyurl.com/WordSearches

> >

> >

.................................................................................\

........................

> >

> >

> >

> > > Guys, this list has been way too quiet. Please check in to let us know how

you are doing--just a quick note is fine.

> > >

> > > Ramblin' Rose

> > > Moderator

> > >

> > > )

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

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

> >

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

> > 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]

I've had problems with my right leg after doing some exercises(mildest yoga in bed) and have been using my cane around the house for the last week. My mom has been really sick so have had added stress from that. So there will be no Thanksgiving at Grandma's house this year. We will have to do something here for my family. Got some money back from mistake i made doing taxes which will probably pay for home health nurse visits. I am still debating whether there will be any decorating for Christmas this year. I am leaning towards No but that idea makes me feel very sad. How much more will being so sick take from me?! My nurse has been suggesting i do something for myself every day like scrapbooking or painting so I have been working on scrapping and i am getting caught up for

this year. I would have almost no pictures if it wasn't for my youngest son's girlfriend making copies of her pics for me. On a scale of 1-10 my depression has gone down one point but the pain up one point cuz of leg pain. But i have a warm house and bed, more than enough food to eat, bills mostly paid(lol), a dvr to tape shows when i sleep way too much, computers to shop, talk and read many encouraging posts. There are days when it seems more than i can handle but when i start listing my blessings, ...well, then it doesn't seem quite so bad as it could be. I have much to be grateful for despite this ass-biting illness. .....lol S. Life may not always be the party we hoped for, but while

we're here we might as well dance!

Subject: Hello? Hello? Anybody there?To: neurosarcoidosis Date: Tuesday, November 16, 2010, 2:54 AM

Guys, this list has been way too quiet. Please check in to let us know how you are doing--just a quick note is fine.

Ramblin' RoseModerator

)

[Guest guest]

, I always enjoy your posts so much! You are right; compared to most of the people in the world we live like kings (and queens). Do you have someone, a nearby church maybe, that would put up some decorations for you? Back in 2000 when the fatigue first hit me, I was too exhausted to do more than work & sleep. A friend from church asked what she could do--cleaning, shopping, etc. I told her I would really like my Christmas decorations up & that's what she did! It meant the world to me. Heck, I don't care about some dust & clutter, but those decorations brightened my mood so much. Even if you haven't attended a church lately, I'll bet there are folks who would love to help you. I know our church would do it in a minute.

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

To: Neurosarcoidosis From: mary_s777@...Date: Tue, 16 Nov 2010 06:58:55 -0800Subject: Re: Hello? Hello? Anybody there?

I've had problems with my right leg after doing some exercises(mildest yoga in bed) and have been using my cane around the house for the last week. My mom has been really sick so have had added stress from that. So there will be no Thanksgiving at Grandma's house this year. We will have to do something here for my family. Got some money back from mistake i made doing taxes which will probably pay for home health nurse visits. I am still debating whether there will be any decorating for Christmas this year. I am leaning towards No but that idea makes me feel very sad. How much more will being so sick take from me?! My nurse has been suggesting i do something for myself every day like scrapbooking or painting so I have been working on scrapping and i am getting caught up for this year. I would have almost no pictures if it wasn't for my youngest son's girlfriend making copies of her pics for me. On a scale of 1-10 my depression has gone down one point but the pain up one point cuz of leg pain. But i have a warm house and bed, more than enough food to eat, bills mostly paid(lol), a dvr to tape shows when i sleep way too much, computers to shop, talk and read many encouraging posts. There are days when it seems more than i can handle but when i start listing my blessings, ...well, then it doesn't seem quite so bad as it could be. I have much to be grateful for despite this ass-biting illness. .....lol S. Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: Hello? Hello? Anybody there?To: neurosarcoidosis Date: Tuesday, November 16, 2010, 2:54 AM

Guys, this list has been way too quiet. Please check in to let us know how you are doing--just a quick note is fine.

Ramblin' RoseModerator

)

[Guest guest]

Just am starting to feel better from the worst 4 week period since the last time I was hospitalized. Thought I was going to end up back in. Severe URI, Pneumonia and all the fun Sarcoid issue's. Went up to 40 mg of Prenisone along with my plaquinil and methotrexate. Was on Levaquin 750 for 3 weeks. Just wasn't getting better then found out (on their 8th trip out to fix my heat) that there was a crack and I had been breathing in Carbon Monoxide for weeks or longer. That has to do wonders for the Sarc monster (don't you think?) Spent 8 grand putting a new system in and am starting to feel better but have no energy and the pain levels are off the scale. Also have to take a break after walking up the stairs,, but who doesn't lol Very rarely do I feel sorry for myself for getting this crappy disease, this wasn't one off them but it was close. I just always think of the people in the world who are in much worse shape then me and then Thank G-d for the life I have, my loving wife and 2 wonderful sons.That's it for me, counting down days till my first vacation in 5 years. It's a week with my in-laws (which is never fun) but I must really need a vacation because it was I who suggested flying down to Florida Christmas week to spend it with them. This disease is eating my brain.

G-d Bless,

Mitch

> >

> >

> > > Guys, this list has been way too quiet. Please check in to let us know how

you are doing--just a quick note is fine.

> > >

> > > Ramblin' Rose

> > > Moderator

> > >

> > > )

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

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

> >

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

> > 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]

Hi Rose,

A couple of weeks ago, I had my first Infliximab (Remicade) infusion.

I feel a little calmer inside, but am not convinced yet that there has

been any real change to the pains in back, fingers, etc. Curiously,

over the recent past, my teeth and jaws have become really sensitive to

cold, even if breathing the winter air in through an open mouth.

Anything from the fridge is painfully cold. Next infusion is on 01 Dec,

so we'll see if that makes the difference. Still on 20mgs Pred for the

while, together with omeprazol for the tum.

Best regards,

On Mon, 15 Nov 2010 21:54:59 -0500, Rose

wrote:

> Guys, this list has been way too quiet. Please check in to let us

> know how you are doing--just a quick note is fine.

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