Re: Sterodal effects

[Guest guest]

.. I just saw

Baughman last Friday and he is moving away from Prednisone, other than to

get immediate control of a situation, like iritis. He wants me to take

Cytoxan

Rose,

You need to go to Cytoxan, Patient Assistance and see if they have an assistance program so you can get on it.

Why is Baughmann leaning toward Cytoxan over Enbrel or Humira or Remicade. BTW- these do have pt asst programs for those w/o insurance.

Hugs,

TRacie

[Guest guest]

Hey are you from the homeland Lecressia? This is Madonna - Amani!

Peace!

Right now I have a great combination of Methodrexate, Prednisone,

Coedine and Avonex it is working quite well. Additionally I eat a YAM

a week for my potassium upkeep.

Every day has pain and uncomforatble-ness, but I go to the tv station

and make it work. I am going to do a show on sarcoid next season.

Education is the key.

Madonna

> I am curious if any anyone could share with me your experinces with

> steroids (prednisone) for neurosacroidosis symtpoms.

>

> Thank you, and Amani (peace in Swahili),

>

> Lacresia

[Guest guest]

Hey Lacresia,

I am on prednisone. It was a godsend in the beginning. I was in a coma like condition. My CNS, NS, and PNS were all affected. The downside of the steroid also rang true in my case. My diabetes went off the charts, my doctors anticipated it and treated me accordingly. Naturally, weight gain is a factor and, again, it rang true for me.

I'm currently being weaned off prednisone, and my body is trying to adjust. I've come down from high mega doses of prednisone to a low of 5mg every other day. My body is showing signs of some resistance because I'm showing signs of weakness and pain when not on the steroid. Some told me this is to be expected since the body has depended on prednisone for awhile. In my case it is approximately a year. I'm willing to bite the bullet to get off this drug as quickly as possible. Primarily and hopefully so that my body can return to its natural function.

Hope information is helpful, Amani

Marge

lgoggans73 wrote:

I am curious if any anyone could share with me your experinces with steroids (prednisone) for neurosacroidosis symtpoms.Thank you, and Amani (peace in Swahili),Lacresia~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hello,

I must be missing something here, but after transitional from prednisone it is necessary to go on another steriod? Or are you talking about another underlying condition that require treatment?? My doctor is weaning off prednisone and we have not discussed another treatment. Is another drug required to treat neuro after prednisone without another outstanding disease???

Ciao

Marge

tiodaat@... wrote:

.. I just sawBaughman last Friday and he is moving away from Prednisone, other than toget immediate control of a situation, like iritis. He wants me to takeCytoxanRose,You need to go to Cytoxan, Patient Assistance and see if they have an assistance program so you can get on it. Why is Baughmann leaning toward Cytoxan over Enbrel or Humira or Remicade. BTW- these do have pt asst programs for those w/o insurance. Hugs,TRacie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant

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

[Guest guest]

Well, Tracie, I taped the visit. Then when I got home I pushed the rewind

button & went to do something else. Later I looked at the tape & the

rewind thing was still going & I thought the tape had come off the reel.

So with great difficulty do to shaky hands, I took the cassette apart, only

to discover that the tape had not come off. It was just so clear that I

didn't see it! I had forgotten to notice how the tape went through the

reel & couldn't get it back right, in the process dropping some pieces,

having to turn my recliner upside down to shake them out. Anyway, I

finally decided to take apart another cassette. This time I got smart &

put a big flat pillow on my lap to catch anything I dropped. Didn't work;

a little round thing hit the pillow & vanished into the chair. In the

process of turning the chair over, I lost my balance & fell onto the little

table containing all the stuff, including the loose tape with Baughman on

it & and a vase of flowers from the yard! You know what happened;

everything got wet & I had to scramble to get the tape up where it could

dry, clean up the mess, etc. I decided I was in no shape to continue.

That was Friday night. I may go for it today (Wed.) Then I'll find out

exactly what Baughman said, since I can't remember it. Long answer to a

short question, huh? Hope you are feeling better. Love, Rose

Original Message:

-----------------

From: tiodaat@...

Date: Tue, 31 May 2005 14:19:06 EDT

To: Neurosarcoidosis

Subject: Re: Sterodal effects

In a message dated 5/31/05 12:14:09 AM Pacific Daylight Time,

mamadog@... writes:

> . I just saw

> Baughman last Friday and he is moving away from Prednisone, other than to

> get immediate control of a situation, like iritis. He wants me to take

> Cytoxan

Rose,

You need to go to Cytoxan, Patient Assistance and see if they have an

assistance program so you can get on it.

Why is Baughmann leaning toward Cytoxan over Enbrel or Humira or Remicade.

BTW- these do have pt asst programs for those w/o insurance.

Hugs,

TRacie

--------------------------------------------------------------------

mail2web - Check your email from the web at

http://mail2web.com/ .

[Guest guest]

I must be missing something here, but after transitional from prednisone it is necessary to go on another steriod? Or are you talking about another underlying condition that require treatment?? My doctor is weaning off prednisone and we have not discussed another treatment. Is another drug required to treat neuro after prednisone without another outstanding disease???

Marge,

The problem with NS is that it is almost always multi-systemic. so, when you go off the prednisone, eventually--the sarc will flare, and you'll need something to treat it with.

For us, it's important that we stay on an immunosuppressant. Since you have the problems with the pred weight, diabetes, etc, then you really need to look at Imuran, or Methotrexate or Plaquenil, or a combination of meds. But to go without any immunosuppresant is just going to excellerate the disease process.

Hugs,

TRacie

[Guest guest]

Hey Tracie,

I was so grateful to the idea that I would finally be coming off prednisone that I didn't fully understand what the repercussion might be without a steriod. Thank you for alerting me to this fact. I will discuss this concern with my physician. Once again, thank you for taking time to jog my memory about neurosarcoidosis.

God bless, stay well

Margetiodaat@... wrote:

I must be missing something here, but after transitional from prednisone it is necessary to go on another steriod? Or are you talking about another underlying condition that require treatment?? My doctor is weaning off prednisone and we have not discussed another treatment. Is another drug required to treat neuro after prednisone without another outstanding disease???Marge,The problem with NS is that it is almost always multi-systemic. so, when you go off the prednisone, eventually--the sarc will flare, and you'll need something to treat it with.For us, it's important that we stay on an immunosuppressant. Since you have the problems with the pred weight, diabetes, etc, then you really need

to look at Imuran, or Methotrexate or Plaquenil, or a combination of meds. But to go without any immunosuppresant is just going to excellerate the disease process.Hugs,TRacie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

OMGosh Rose! I hope you are ok from that fall. Life is sometimes like a tv comedy isn't it?..... Reminds me of Jack Tripper on Three's Company or something of that order....lol. I would have thrown a few swear words in on that one. Hope you find all the pieces and that the tape dries out alright. hugs S."mamadog@..." wrote:

Well, Tracie, I taped the visit. Then when I got home I pushed the rewindbutton & went to do something else. Later I looked at the tape & therewind thing was still going & I thought the tape had come off the reel. So with great difficulty do to shaky hands, I took the cassette apart, onlyto discover that the tape had not come off. It was just so clear that Ididn't see it! I had forgotten to notice how the tape went through thereel & couldn't get it back right, in the process dropping some pieces,having to turn my recliner upside down to shake them out. Anyway, Ifinally decided to take apart another cassette. This time I got smart & put a big flat pillow on my lap to catch anything I dropped. Didn't work;a little round thing hit the pillow & vanished into the chair. In

theprocess of turning the chair over, I lost my balance & fell onto the littletable containing all the stuff, including the loose tape with Baughman onit & and a vase of flowers from the yard! You know what happened;everything got wet & I had to scramble to get the tape up where it coulddry, clean up the mess, etc. I decided I was in no shape to continue. That was Friday night. I may go for it today (Wed.) Then I'll find outexactly what Baughman said, since I can't remember it. Long answer to ashort question, huh? Hope you are feeling better. Love, RoseOriginal Message:-----------------From: tiodaat@...Date: Tue, 31 May 2005 14:19:06 EDTTo: Neurosarcoidosis Subject: Re: Sterodal effects> . I just saw>

Baughman last Friday and he is moving away from Prednisone, other than to> get immediate control of a situation, like iritis. He wants me to take> CytoxanRose,You need to go to Cytoxan, Patient Assistance and see if they have an assistance program so you can get on it. Why is Baughmann leaning toward Cytoxan over Enbrel or Humira or Remicade. BTW- these do have pt asst programs for those w/o insurance. Hugs,TRacie--------------------------------------------------------------------mail2web - Check your email from the web athttp://mail2web.com/ .~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers

Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database