Neuromyelitis Optica: The Learning Center: Jan's blog

Yes I have both MG and NMO. I got MG in 1965 and was real bad , breathing walking talking etc for about 5-6 years. I had radiation of the thymus for it but it still was very bothersome until 1986 or so and I have had set backs every so often. My latest set back for MG came in this year January when. I got of the experimental drug eculizamab that I was on for NMO at the Mayo. The set back came when i got off the drug. Eculizamab is now being tested in mg patients.

I am also in Detroit area downriver. If you want to email me me personal email is kmffriend@aol.com.

There are a number of people that have NMO an MG.

Michigan Jan

Sent from my iPad

On Apr 15, 2011, at 7:26 PM, cmcmichellem@aol.com wrote:

Jan, do you have both NMO and MG? My sister has MG and swears she has NMO too, but hasn't been diagnosed with it. We also live in Michigan - she lives in the Detroit area and I live up near Ludington. She uses mestanon (I'm sure I'm not spelling that right) to help with her energy. I don't know if that would be effective with me.

Take care,

Michelle

-----Original Message-----

From: Jan Friend <kmffriend@aol.com>

To: devics-spectrum@guthyjacksonfoundation.org <devics-spectrum@guthyjacksonfoundation.org>

Sent: Fri, Apr 15, 2011 6:12 pm

Subject: Re: [Devics-spectrum] Looking for tips on handling exhaustion with NMO

I also can relate. I was on 30 mg prednisone one day then 15 mg the next. The day I went to 15mg. I couldn't function. It affected my myasthenia GRavis and I could not even hold up my head. I then went back to 30 mg per day and I improved greatly and after about 3 weeks I am almost back to my normal.

Michigan Jan

Sent from my iPad

On Apr 15, 2011, at 6:01 PM, Julie Schultz <julie.schultz76@gmail.com> wrote:

I can relate. Right now, I'm about to drop but I have other reasons besides nmo for my tiredness. I have "parties" in mom's room. I don't know how old your boys are, but my boys love that. We get pizza and movies and dessert and just hang out in front of the tv.

I wonder if exercise would help too, it might help your muscles to "last" longer... Just an idea.

I would talk to your dr to see if you can make drug changes to help.

Thanks,

Julie

On Fri, Apr 15, 2011 at 1:12 PM, <cmcmichellem@aol.com> wrote:

I'm very frustrated.

Here's the drug regimen I'm on: 60mg prednisone every OTHER day (to pulse until my imuran takes full effect - another 4 or 5 months), Imuran (150mg every day), bactrim (can't remember the dose), kapidex (for reflux), lexapro (20mg) - all of this per Dr. Weinshanker and my family doc (the kapidex and lexapro is from my family doc).

Every OTHER day I'm exhausted. I could sleep the entire day away. I'm very frustrated because I have three kids to take care of and I find that every other day I can't do it.

We are on vacation in Pennsylvania right now and I took the kids to Philly yesterday. I was hoping to take them to Valley Forge today and I just couldn't get out of bed to do it. I could barely get myself in the shower.

My husband has a conference here, so I'm with my boys solo most of the time. Monday we went to the Baltimore Aquarium. Tuesday and Wednesday I had to sleep the entire day (thank goodness my boys wanted to swim both days so I laid on a lounge chair by the pool and read. Even that wiped me out).

Yesterday (Thursday), I had energy and took the boys to Philly to see Independence Hall. Had a great time. Today, I feel horrible.

I have a feeling that the good days result from the extra energy the prednisone gives me (every other day). My question is - what about the days where I'm too tired to lift my head? I still have kids I have to take care of and I don't want them remembering their mother as "that lady who slept all day."

When I'm exhausted like this, I slur my speech, can't really focus, and my sunburn feeling in my torso is severe. My tingles in my legs and abdomen are severe too.

Any suggestions? I'll try anything - change of behavior, diet, drugs - anything. Thank you so much!

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Re: [Devics-spectrum] Looking for tips on handling exhaustion with NMO

Jan

April 15, 2011 by Jan Comments (0)

I also can relate. I was on 30 mg prednisone one day then 15 mg the next. The day I went to 15mg. I couldn't function. It affected my myasthenia GRavis and I could not even hold up my head. I then went back to 30 mg per day and I improved greatly and after about 3 weeks I am almost back to my normal.

Michigan Jan

Sent from my iPad

On Apr 15, 2011, at 6:01 PM, Julie Schultz <julie.schultz76@gmail.com> wrote:

I can relate. Right now, I'm about to drop but I have other reasons besides nmo for my tiredness. I have "parties" in mom's room. I don't know how old your boys are, but my boys love that. We get pizza and movies and dessert and just hang out in front of the tv.

I wonder if exercise would help too, it might help your muscles to "last" longer... Just an idea.

I would talk to your dr to see if you can make drug changes to help.

Thanks,

Julie

On Fri, Apr 15, 2011 at 1:12 PM, <cmcmichellem@aol.com> wrote:

I'm very frustrated.

Here's the drug regimen I'm on: 60mg prednisone every OTHER day (to pulse until my imuran takes full effect - another 4 or 5 months), Imuran (150mg every day), bactrim (can't remember the dose), kapidex (for reflux), lexapro (20mg) - all of this per Dr. Weinshanker and my family doc (the kapidex and lexapro is from my family doc).

Every OTHER day I'm exhausted. I could sleep the entire day away. I'm very frustrated because I have three kids to take care of and I find that every other day I can't do it.

We are on vacation in Pennsylvania right now and I took the kids to Philly yesterday. I was hoping to take them to Valley Forge today and I just couldn't get out of bed to do it. I could barely get myself in the shower.

My husband has a conference here, so I'm with my boys solo most of the time. Monday we went to the Baltimore Aquarium. Tuesday and Wednesday I had to sleep the entire day (thank goodness my boys wanted to swim both days so I laid on a lounge chair by the pool and read. Even that wiped me out).

Yesterday (Thursday), I had energy and took the boys to Philly to see Independence Hall. Had a great time. Today, I feel horrible.

I have a feeling that the good days result from the extra energy the prednisone gives me (every other day). My question is - what about the days where I'm too tired to lift my head? I still have kids I have to take care of and I don't want them remembering their mother as "that lady who slept all day."

When I'm exhausted like this, I slur my speech, can't really focus, and my sunburn feeling in my torso is severe. My tingles in my legs and abdomen are severe too.

Any suggestions? I'll try anything - change of behavior, diet, drugs - anything. Thank you so much!

_______________________________________________
Spectrum is the new home of Devic's Support

View posts on Spectrum: http://spectrum.guthyjacksonfoundation.org/

To change your Spectrum options or unsubscribe to this email list please visit http://spectrum.guthyjacksonfoundation.org/pg/DevicsSupport/settings

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Re: [Devics-spectrum] Eculizimab Trial

Jan

March 7, 2011 by Jan Comments (0)

2

bottomMargin=7 leftMargin=7 topMargin=7 rightMargin=7> face=Arial color=#000000 size=2>

Hi Burt

I think I was the 2nd one on the drug at Rochester Dec 2009). 7
patients there and 7 in Arizona. I do not find out anything on the drug or
the tests. It all is for the study. I think it wasn't until 6-10
months later that I think they had all their patients and I believe it won't be
until everyone has completed the 1 yr test that they will even look at the
data.

PNH has no other drugs that work for it I believe so the drug company
by law (I think) has to offer it. NMO has other drugs that do work in many
case soooo? I was not on any treatment for NMO before eculizamab so I have
nothing to compare it with.

I had gone 6 years just taking oral prednisone for attacks and getting
worse and no one knew what I had as I have no liesons or scaring that I am aware
of.

Jan-Mich

In a message dated 3/4/2011 10:07:43 P.M. Eastern Standard Time,
prinx05@mac.com writes:

style="PADDING-LEFT: 5px; MARGIN-LEFT: 5px; BORDER-LEFT: blue 2px solid"> style="BACKGROUND-COLOR: transparent" face=Arial color=#000000 size=2>

Hi Jan,

Do you or anyone else know what the studies on eculizimab
has shown. It has been FDA approved for a disease called an autoimmune
disease called (PNH) paroxysmal nocturnal hemoglobinuria and insurance
companies are paying about 400000 per year. Could this be the drug we
are all waiting for?

Burt

On Mar 4, 2011, at 9:00 PM, href="mailto:Kmffriend@aol.com">Kmffriend@aol.com wrote:

class=Apple-interchange-newline>

bottommargin="7" leftmargin="7" topmargin="7" rightmargin="7"> face=Arial color=#000000 size=2>

Julie

Once my 1 yr study was over I was taken off eculizamab and am now on
200 mg Imuran and 30 mg prednisone.

It is my understanding that the drug is in study phase and not FDA
approved.. The study supplied the medicine free to me and mailed it to
my home every 2 weeks for infusion. I think the drug company probably
picked up the $500,000 tab for medicine and infusions in my home as part of
their research & development. As I understand it, it is still in
the experimental research stage and not out there to be prescribed as an
approved drug.

Jan-Mich

In a message dated 3/4/2011 8:46:20 P.M. Eastern Standard Time, title=mailto:julie.schultz76@gmail.com
href="mailto:julie.schultz76@gmail.com">julie.schultz76@gmail.com
writes:

style="PADDING-LEFT: 5px; MARGIN-LEFT: 5px; BORDER-LEFT: blue 2px solid"> style="BACKGROUND-COLOR: transparent" face=Arial color=#000000 size=2>

Thank you very, very much for the information. I'm not getting
into the trial at this point, but I might be in the near future. I'm
on Cellcept and I've been having a lot of trouble with relapses. I
think we're going to add prednisone and give the Cellcept more time to
work. However, I'm very glad to hear that this might be a feasible
option. I've heard the medication is incredibly expensive, like
$400,000 a year. What do you know about that? Are you going to
be able to stay on it?

Julie

On Fri, Mar 4, 2011 at 7:39 PM, dir=ltr>< href="mailto:Kmffriend@aol.com">Kmffriend@aol.com>
wrote:

style="PADDING-LEFT: 1ex; MARGIN: 0px 0px 0px 0.8ex; BORDER-LEFT: #ccc 1px solid">

face=Arial color=#000000 size=2>

Hi Julie

I am/was on the eculizimab trial out of the Mayo at Rochester, MN
with Dr Pittock. It is a 1 yr trial so my last follow up 15 month
appt is this Wed. Before treatment I was constantly having feelings of
an attack onset and had 3 increasing debilitating attacks in the year
prior to the trial--i.e. 2009. I always felt like I was going
to have an attack at any minute- had banding, burning, etc all the
time. I had very limited walking. I had my first
treatment Dec 2009 and last one Dec 2010.

Since I started the infusions I have not had any attacks or
felt like I was going to have an attack. I have been able to
regain some of my lost strength and most of the pain has gone
away. It is soooo wonderful not to be constantly feeling like an
attack is eminent . I lived my life in fear of an attack.

I am also able to lie for a few minutes on my left side which is my
"bad" side of my attacks before it all goes numb. Also I don't
wince from someone touching me like I'm burning, like getting a gym
floor burn. I was unable to go grocery shopping or to the store before
treatments- I now can go grocery shopping walking with a cart as
long as my hubby goes and helps checkout and bag.

I had very few side effects. I am so very thankful that I was
chosen to be in the study and feel that it saved me from being so much
weaker and disabled.

Jan-Mich

In a message dated 3/1/2011 9:01:25 P.M. Eastern Standard Time, title=mailto:julie.schultz76@gmail.com
href="mailto:julie.schultz76@gmail.com"
target=_blank>julie.schultz76@gmail.com writes:

style="PADDING-LEFT: 5px; MARGIN-LEFT: 5px; BORDER-LEFT: blue 2px solid"> style="BACKGROUND-COLOR: transparent" face=Arial color=#000000 size=2>

Who here is on that? How is it going? What side
effects are you having? I'm thinking about joining it.

Julie

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Re: [Devics-spectrum] Eculizimab Trial

Jan

March 4, 2011 by Jan Comments (0)

2

bottomMargin=7 leftMargin=7 topMargin=7 rightMargin=7> face=Arial color=#000000 size=2>

Julie

Once my 1 yr study was over I was taken off eculizamab and am now on 200 mg
Imuran and 30 mg prednisone.

It is my understanding that the drug is in study phase and not FDA
approved.. The study supplied the medicine free to me and mailed it to my
home every 2 weeks for infusion. I think the drug company probably picked
up the $500,000 tab for medicine and infusions in my home as part of their
research & development. As I understand it, it is still in the
experimental research stage and not out there to be prescribed as an approved
drug.

Jan-Mich

In a message dated 3/4/2011 8:46:20 P.M. Eastern Standard Time,
julie.schultz76@gmail.com writes:

style="PADDING-LEFT: 5px; MARGIN-LEFT: 5px; BORDER-LEFT: blue 2px solid"> style="BACKGROUND-COLOR: transparent" face=Arial color=#000000 size=2>

Thank you very, very much for the information. I'm not getting into
the trial at this point, but I might be in the near future. I'm on
Cellcept and I've been having a lot of trouble with relapses. I think
we're going to add prednisone and give the Cellcept more time to work.
However, I'm very glad to hear that this might be a feasible option.
I've heard the medication is incredibly expensive, like $400,000 a year.
What do you know about that? Are you going to be able to stay on
it?

Julie

On Fri, Mar 4, 2011 at 7:39 PM, < title=mailto:Kmffriend@aol.com
href="mailto:Kmffriend@aol.com">Kmffriend@aol.com> wrote:

style="PADDING-LEFT: 1ex; MARGIN: 0px 0px 0px 0.8ex; BORDER-LEFT: #ccc 1px solid">

face=Arial color=#000000 size=2>

Hi Julie

I am/was on the eculizimab trial out of the Mayo at Rochester, MN with
Dr Pittock. It is a 1 yr trial so my last follow up 15 month appt is
this Wed. Before treatment I was constantly having feelings of an attack
onset and had 3 increasing debilitating attacks in the year prior to the
trial--i.e. 2009. I always felt like I was going to have an
attack at any minute- had banding, burning, etc all the time. I had
very limited walking. I had my first treatment Dec 2009 and last
one Dec 2010.

Since I started the infusions I have not had any attacks or felt
like I was going to have an attack. I have been able to regain
some of my lost strength and most of the pain has gone away. It is
soooo wonderful not to be constantly feeling like an attack is eminent
. I lived my life in fear of an attack.

I am also able to lie for a few minutes on my left side which is my
"bad" side of my attacks before it all goes numb. Also I don't wince
from someone touching me like I'm burning, like getting a gym floor burn. I
was unable to go grocery shopping or to the store before treatments- I now
can go grocery shopping walking with a cart as long as my hubby goes
and helps checkout and bag.

I had very few side effects. I am so very thankful that I was
chosen to be in the study and feel that it saved me from being so much
weaker and disabled.

Jan-Mich

In a message dated 3/1/2011 9:01:25 P.M. Eastern Standard Time, title=mailto:julie.schultz76@gmail.com
href="mailto:julie.schultz76@gmail.com"
target=_blank>julie.schultz76@gmail.com writes:

style="PADDING-LEFT: 5px; MARGIN-LEFT: 5px; BORDER-LEFT: blue 2px solid"> style="BACKGROUND-COLOR: transparent" face=Arial color=#000000 size=2>

Who here is on that? How is it going? What side effects
are you having? I'm thinking about joining it.

Julie

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Jan

Re: [Devics-spectrum] Looking for tips on handling exhaustion with NMO

Jan

Re: [Devics-spectrum] Looking for tips on handling exhaustion with NMO

Jan

Re: [Devics-spectrum] Eculizimab Trial

Jan

Re: [Devics-spectrum] Eculizimab Trial

Jan

Re: [Devics-spectrum] Eculizimab Trial

Jan