Return of the Sarc Monster

[Guest guest]

Although I haven't posted recently, I have been keeping up with things

by reading the emails. The disc decompression surgery went really well

and I am now walking around five or six miles each day as part of the

recovery process. A recent MRI showed that the mechanical issues have

all cleared. However, when I came down on the painkillers, the old

pains in the waterworks and the fingers started up again. A visit to

the neuro yestreday confirmed that the ACE levels are up and that the

sarc monster has reared its ugly head again. So it's back on the preds

again. He is also trying a drug called mycopeholate mofetil

( " Cellcept " ), which he says has worked well with three of his patients

who are refactory to methotrexate, infliximab and others. Let's hope

that it works.

Best regards,

[Guest guest]

I'm sorry to hear that, things like one thing fixed another goes wrong.  Hope you get to feeling better soon. Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Although I haven't posted recently, I have been keeping up with things

by reading the emails. The disc decompression surgery went really well

and I am now walking around five or six miles each day as part of the

recovery process. A recent MRI showed that the mechanical issues have

all cleared. However, when I came down on the painkillers, the old

pains in the waterworks and the fingers started up again. A visit to

the neuro yestreday confirmed that the ACE levels are up and that the

sarc monster has reared its ugly head again. So it's back on the preds

again. He is also trying a drug called mycopeholate mofetil

( " Cellcept " ), which he says has worked well with three of his patients

who are refactory to methotrexate, infliximab and others. Let's hope

that it works.

Best regards,

[Guest guest]

, Give the cellcept a try.. We use it here for . Once we got past the side affects, nausea being the worst of them....she seems to be doing well with it. Hope things continue to improve for you.MattTo: Neurosarcoidosis Sent: Tuesday, May 24, 2011 2:34

AMSubject: Return of the Sarc Monster

Although I haven't posted recently, I have been keeping up with things

by reading the emails. The disc decompression surgery went really well

and I am now walking around five or six miles each day as part of the

recovery process. A recent MRI showed that the mechanical issues have

all cleared. However, when I came down on the painkillers, the old

pains in the waterworks and the fingers started up again. A visit to

the neuro yestreday confirmed that the ACE levels are up and that the

sarc monster has reared its ugly head again. So it's back on the preds

again. He is also trying a drug called mycopeholate mofetil

("Cellcept"), which he says has worked well with three of his patients

who are refactory to methotrexate, infliximab and others. Let's hope

that it works.

Best regards,

[Guest guest]

I've been doing well on the CellCept too, I have some mild nausea / queasiness,

but that's about it. My liver is much happier on it too, my gamma GT reading is

around 80 now (instead of 479!).

xo

>

> , Give the cellcept a try.. We use it here for . Once we got

past the side affects,

> nausea being the worst of them....she seems to be doing well with it. Hope

things continue to

> improve for you.

>

> Matt

>

>

> To: Neurosarcoidosis

> Sent: Tuesday, May 24, 2011 2:34 AM

> Subject: Return of the Sarc Monster

>

>

>

> Although I haven't posted recently, I have been keeping up with things

> by reading the emails. The disc decompression surgery went really well

> and I am now walking around five or six miles each day as part of the

> recovery process. A recent MRI showed that the mechanical issues have

> all cleared. However, when I came down on the painkillers, the old

> pains in the waterworks and the fingers started up again. A visit to

> the neuro yestreday confirmed that the ACE levels are up and that the

> sarc monster has reared its ugly head again. So it's back on the preds

> again. He is also trying a drug called mycopeholate mofetil

> ( " Cellcept " ), which he says has worked well with three of his patients

> who are refactory to methotrexate, infliximab and others. Let's hope

> that it works.

>

> Best regards,

>

>

>

>

>

>

>

[Guest guest]

We had 's check up today and all was fairly well. the cellcept is doing its job. The lesions have not gotten smaller, but they have not gotten any bigger either. I am at least happy with that news. If you can tolerate the cellcept and it did take some time to adjust to it, the med seems to work well.Hope you continue to improve.MattTo: Neurosarcoidosis Sent: Tuesday, May 24, 2011 9:47 PMSubject: Re: Return of the Sarc Monster

I've been doing well on the CellCept too, I have some mild nausea / queasiness, but that's about it. My liver is much happier on it too, my gamma GT reading is around 80 now (instead of 479!).xo > > , Give the cellcept a try.. We use it here for . Once we got past the side affects, > nausea being the worst of them....she seems to be doing well with it. Hope things continue to > improve for you.> > Matt> > > To: Neurosarcoidosis > Sent: Tuesday, May 24, 2011 2:34 AM> Subject: Return of the Sarc Monster>

> > > Although I haven't posted recently, I have been keeping up with things> by reading the emails. The disc decompression surgery went really well> and I am now walking around five or six miles each day as part of the> recovery process. A recent MRI showed that the mechanical issues have> all cleared. However, when I came down on the painkillers, the old> pains in the waterworks and the fingers started up again. A visit to> the neuro yestreday confirmed that the ACE levels are up and that the> sarc monster has reared its ugly head again. So it's back on the preds> again. He is also trying a drug called mycopeholate mofetil> ("Cellcept"), which he says has worked well with three of his patients> who are refactory to methotrexate, infliximab and others. Let's hope> that it works.> > Best regards,> > > >

> > > ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community 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]

Thanks for all the support and cheerful news. It's great to hear of folk for

whom CellCept works. It really boosts the spirit. So far, I have had no ill

effects, except, perhaps, for a slight headache. the initial burst from the

preds is making a big difference already.

Best regards,

>

> >

> > ,  Give the cellcept a try..  We use  it here for .  Once we got

past the side affects,

> > nausea being the worst of them....she seems to be doing well with it.  Hope

things continue to

> > improve for you.

> >

> > Matt

> >

> >

> > To: Neurosarcoidosis

> > Sent: Tuesday, May 24, 2011 2:34 AM

> > Subject: Return of the Sarc Monster

> >

> > 

> >

> > Although I haven't posted recently, I have been keeping up with things

> > by reading the emails. The disc decompression surgery went really well

> > and I am now walking around five or six miles each day as part of the

> > recovery process. A recent MRI showed that the mechanical issues have

> > all cleared. However, when I came down on the painkillers, the old

> > pains in the waterworks and the fingers started up again. A visit to

> > the neuro yestreday confirmed that the ACE levels are up and that the

> > sarc monster has reared its ugly head again. So it's back on the preds

> > again. He is also trying a drug called mycopeholate mofetil

> > ( " Cellcept " ), which he says has worked well with three of his patients

> > who are refactory to methotrexate, infliximab and others. Let's hope

> > that it works.

> >

> > Best regards,

> >

> >

> >

> >

> >

> >

> >

>

>

>

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

>

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

> 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]

Hello: after just about everything else except radiation, I was started on CellCept last December, and it's been the first drug I've tolerated without side effects -- I have had none with this drug, and with you the same success.

CellCept, for me, is the first drug for which I'vehad no side effects (with Imuran, I thought I was OK but my liver said differently, and with the chemo/cytoxan, I had side effects I could live with, but again, liver and kidnesy said no). With methotrexate I hit max dose with no results at all.

But with the CellCept, after three months' use I had my first MRI that showed no progression of the disease in my brain since diagnosis a year ago.

I am still on high-dose prednisone as disease is active--I have had several flare-ups, especially continued eye problems, but am finally in a "holding" pattern clinically speaking.

Starting next week, I will begin treatment with Remicaide, in addition to CellCept. This is my final hope, here in Canada--the hope is that I can finally start tapering off prednisone. After 18 months, continuous use of high-dose treatment wth pred (first eye problem began in Aug '09, and I started on pred in Sept '09) the day I begin reducing my steroids cannot come fast enough!!

Anyhow, I wish you the success I have had with the CellCept.

in Niagara

> To: Neurosarcoidosis > Date: Wed, 25 May 2011 11:47:18 +1000> Subject: Re: Return of the Sarc Monster> > I've been doing well on the CellCept too, I have some mild nausea / queasiness, but that's about it. My liver is much happier on it too, my gamma GT reading is around 80 now (instead of 479!).> > xo > > > > > > > > , Give the cellcept a try.. We use it here for . Once we got past the side affects, > > nausea being the worst of them....she seems to be doing well with it. Hope things continue to > > improve for you.> > > > Matt> > > > > > To: Neurosarcoidosis > > Sent: Tuesday, May 24, 2011 2:34 AM> > Subject: Return of the Sarc Monster> > > > > > > > Although I haven't posted recently, I have been keeping up with things> > by reading the emails. The disc decompression surgery went really well> > and I am now walking around five or six miles each day as part of the> > recovery process. A recent MRI showed that the mechanical issues have> > all cleared. However, when I came down on the painkillers, the old> > pains in the waterworks and the fingers started up again. A visit to> > the neuro yestreday confirmed that the ACE levels are up and that the> > sarc monster has reared its ugly head again. So it's back on the preds> > again. He is also trying a drug called mycopeholate mofetil> > ("Cellcept"), which he says has worked well with three of his patients> > who are refactory to methotrexate, infliximab and others. Let's hope> > that it works.> > > > Best regards,> > > > > > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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]

All the best & i hope it continues to work for you.MattTo: Neurosarcoidosis Sent: Thursday, May 26, 2011 2:50 AMSubject: Re: Return of the Sarc Monster

Thanks for all the support and cheerful news. It's great to hear of folk for whom CellCept works. It really boosts the spirit. So far, I have had no ill effects, except, perhaps, for a slight headache. the initial burst from the preds is making a big difference already.

Best regards,

>

> >

> > , Give the cellcept a try.. We use it here for . Once we got past the side affects,

> > nausea being the worst of them....she seems to be doing well with it. Hope things continue to

> > improve for you.

> >

> > Matt

> >

> >

> > To: Neurosarcoidosis

> > Sent: Tuesday, May 24, 2011 2:34 AM

> > Subject: Return of the Sarc Monster

> >

> >

> >

> > Although I haven't posted recently, I have been keeping up with things

> > by reading the emails. The disc decompression surgery went really well

> > and I am now walking around five or six miles each day as part of the

> > recovery process. A recent MRI showed that the mechanical issues have

> > all cleared. However, when I came down on the painkillers, the old

> > pains in the waterworks and the fingers started up again. A visit to

> > the neuro yestreday confirmed that the ACE levels are up and that the

> > sarc monster has reared its ugly head again. So it's back on the preds

> > again. He is also trying a drug called mycopeholate mofetil

> > ("Cellcept"), which he says has worked well with three of his patients

> > who are refactory to methotrexate, infliximab and others. Let's hope

> > that it works.

> >

> > Best regards,

> >

> >

> >

> >

> >

> >

> >

>

>

>

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

>

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

> 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]

Matt, that's good that the Cellcept seems to have stopped the monster in its

tracks. Now let's hope it begins retreating!

Re: Return of the Sarc Monster

I've been doing well on the CellCept too, I have some mild nausea / queasiness,

but that's about it. My liver is much happier on it too, my gamma GT reading is

around 80 now (instead of 479!).

xo

>

> ,  Give the cellcept a try..  We use  it here for .  Once we got

past the side affects,

> nausea being the worst of them....she seems to be doing well with it.  Hope

things c

[Guest guest]

Good news, . hope it keeps improving.

Re: Return of the Sarc Monster

>

> I've been doing well on the CellCept too, I have some mil

[Guest guest]

I'm glad you seem to be doing better . Hopefully they will get the monster back under control and you will keep improving.

To: Neurosarcoidosis Sent: Tue, May 24, 2011 2:34:55 AMSubject: Return of the Sarc Monster

Although I haven't posted recently, I have been keeping up with thingsby reading the emails. The disc decompression surgery went really welland I am now walking around five or six miles each day as part of therecovery process. A recent MRI showed that the mechanical issues haveall cleared. However, when I came down on the painkillers, the oldpains in the waterworks and the fingers started up again. A visit tothe neuro yestreday confirmed that the ACE levels are up and that thesarc monster has reared its ugly head again. So it's back on the predsagain. He is also trying a drug called mycopeholate mofetil("Cellcept"), which he says has worked well with three of his patientswho are refactory to methotrexate, infliximab and others. Let's hopethat it works.Best regards,