Re: Re: Remicade and insurance

[Guest guest]

I

would love it if you could post the medical references, as I may be going down

that road myself here soon. Thank You,

Marla

Re:

Remicade and insurance

I have been on Remicade since March 2004.

Things have gone very

well, all in all. After the first 3 initial

treatments, the MRI of

my brain and neck showed all clear except for some

scarring on my

brain, my lung cat scan was clear. We

couldn't believe it. But he

wanted to not continue with the treatments and see

if it remained

clear. After about 7 weeks I started having

more weakness, he put

me right back on Remicade and started with the 3

initial treatments

(week 1, week 3 and week6) everything was

fine. We set it up to do

every 8 weeks for a year. The same treatment

schedule usually used

for Krohn's Diseasee. My Pulmonary doc gave

me a flu shot (dead

virus) and I started having more neuro problems at

about the 6 week

mark. I went for an MRI of neck and back,

they were clear. My

Neuro doc believes it was the flu shot causes my

immune system to

react. I got a treatment of Remicade and it

is getting better

slowly. I have to call him on Monday to see

if we want to shorten

the time between the infustions. Except for

the possible flu shot

problem, I have been good. I have BCBS and

they approved it with a

letter from my Neuro Doc. I can post the

medicat references he used

for anyone who may need them. Good luck to

all with this very weird

disease. Let's make our X-Mas or New Year's

Wish to be for

Remission. Take care.

>

> >

> > Esther,

> > I've never been on Remicade. My

doctor lost a pt. on it & won't

use it

> > anymore.

> >

> > I did very well on Enbrel until I had a

neurological flare. The

docs

> > couldn't decide if it was the neurosarc

or the Enbrel & went off

> > Enbrel.

> >

> > Next my doc wants to try Humira.

At national conferences he

talks

> > about my

> > case & the problems he has had in

finding something that would

work.

> > He says

> > Humira is getting rave reviews from

other docs, but he hasn't

seen any

> > tests

> > results of Humira for sarcoidosis.

> >

> > My suggestion to anyone in the group

trying to get Remicade,

Enbrel or

> > Humira

> > approved by their health plan is to ask

those of us on these

drugs

> > about our

> > pharmacy plan/health plan. With the

knowledge that several of

the

> > major plans

> > have approved the use of these drugs for

sarcoid (neuro or not),

it

> > could help

> > others in the group get their plan to

approve it.

> >

> > MerkMedco approved Enbrel quickly.

Before my second shipment my

> > employer

> > switched to the Caremark pharmacy plan

& they approved Enbrel.

> >

> > Good luck to all in getting the fancy

drugs approved.

> > Dee

> >

> >

> >

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

> > The Neurosarcoidosis Community

> >

> > NS CHAT:- Has been cancelled for now.

> >

> > 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

would love it if you could post the medical references, as I may be going down

that road myself here soon. Thank You,

Marla

Re:

Remicade and insurance

I have been on Remicade since March 2004.

Things have gone very

well, all in all. After the first 3 initial

treatments, the MRI of

my brain and neck showed all clear except for some

scarring on my

brain, my lung cat scan was clear. We

couldn't believe it. But he

wanted to not continue with the treatments and see

if it remained

clear. After about 7 weeks I started having

more weakness, he put

me right back on Remicade and started with the 3

initial treatments

(week 1, week 3 and week6) everything was

fine. We set it up to do

every 8 weeks for a year. The same treatment

schedule usually used

for Krohn's Diseasee. My Pulmonary doc gave

me a flu shot (dead

virus) and I started having more neuro problems at

about the 6 week

mark. I went for an MRI of neck and back,

they were clear. My

Neuro doc believes it was the flu shot causes my

immune system to

react. I got a treatment of Remicade and it

is getting better

slowly. I have to call him on Monday to see

if we want to shorten

the time between the infustions. Except for

the possible flu shot

problem, I have been good. I have BCBS and

they approved it with a

letter from my Neuro Doc. I can post the

medicat references he used

for anyone who may need them. Good luck to

all with this very weird

disease. Let's make our X-Mas or New Year's

Wish to be for

Remission. Take care.

>

> >

> > Esther,

> > I've never been on Remicade. My

doctor lost a pt. on it & won't

use it

> > anymore.

> >

> > I did very well on Enbrel until I had a

neurological flare. The

docs

> > couldn't decide if it was the neurosarc

or the Enbrel & went off

> > Enbrel.

> >

> > Next my doc wants to try Humira.

At national conferences he

talks

> > about my

> > case & the problems he has had in

finding something that would

work.

> > He says

> > Humira is getting rave reviews from

other docs, but he hasn't

seen any

> > tests

> > results of Humira for sarcoidosis.

> >

> > My suggestion to anyone in the group

trying to get Remicade,

Enbrel or

> > Humira

> > approved by their health plan is to ask

those of us on these

drugs

> > about our

> > pharmacy plan/health plan. With the

knowledge that several of

the

> > major plans

> > have approved the use of these drugs for

sarcoid (neuro or not),

it

> > could help

> > others in the group get their plan to

approve it.

> >

> > MerkMedco approved Enbrel quickly.

Before my second shipment my

> > employer

> > switched to the Caremark pharmacy plan

& they approved Enbrel.

> >

> > Good luck to all in getting the fancy

drugs approved.

> > Dee

> >

> >

> >

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

> > The Neurosarcoidosis Community

> >

> > NS CHAT:- Has been cancelled for now.

> >

> > 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]

Marla, Joan & others, as always this is such an individual issue. I had the flu once, back in 1974, and I never want to experience that again. In contrast to Marla's pulmonologist, mine stressed that I needed the flu & pneumonia (once) shots. I got the pneumonia shot 2 years ago, and get the flu shot every year. I've never had any localized reactions or flares. I don't know if there are any studies out there that would shed some light & help us decide. Rose

RE: Re: Remicade and insurance

Joan,

You are not losing it, Sarc being an autoimmune disease tries to fix things; ie: your stomach having problems the sarc kicks in and tries to fix it, but only does more damage, as it over compensates, or the disease is over active, therefore you get the problems. Does that make sense? I’ve received the flu shot every year since it came out, I don’t know if it’s a fluke or something related, but the last couple of years in the fall is when the neuro flared, last year for the first time, and then again about a week after getting my flu shot my pain got much worse, who know?? I got the pneumonia shot and man was that bad, my family doc gave it to me at a physical, was on steroids at the time and had a terrible reaction, was sick for a week, my arm swelled twice it size and was red hot, that went away very slowly. My plumonologist doc told me never to take it again, and said I reacted because I was on high doses of steroids. (I would think it would be the other way around?). but needless to say I will never take it no matter what!!

Marla

-----Original Message-----From: pickstands@... Sent: Sunday, December 05, 2004 6:06 PMTo: Neurosarcoidosis Subject: Re: Re: Remicade and insurance

Yes, I too, would like the medicat info ... my doctor has not mentioned it to me yet accept for the fact that they just finished the clinical study, which I knew since Tracie was one of the individuals on the trial. I have read good reports on Remicade on this site, but it seems as though it is just as long as the sarc patient is on Remicade, and that once a sarc patient goes off it, they have major problems ... and Tracie is a good example of that as well as yourself.

I, for the very reason you mentioned, am petrified of the flu shot. My doctors keep trying to persuade me to get it, but after my aunt became so sick with shingles within a week or so after receiving the shot, I just can't bring myself to get it. The other years (pre NS), the doctors were okay with me not taking it; they were very persistent this year (post NS dx), but I still refused it.

How about everyone else?...Do you all get the flu shot?...do you do okay with it?

This may sound crazy, but I've noticed some things within my own body ... and I need to stress that ... within my own body ... but I've noticed that if I have any kind of sickness or injury even, that part of my body becomes the Monster's next organ to go after. Example: In June 2002, I had a lung infection. I always walked around with a lung infection and inflammation anyway since my pulmonary sarc was dx'ed in 2000. I was washing my car, and turned and felt "something" in my back ... my disc was bulging after it was MRI'd. I developed radiculopathy. I developed nerve pain, but did not yet have peripheral neuropathy. I had 3 steroid epidurals, and they seemed to help ... or perhaps it was just time and the neurontin.

Anyway, my feeling is because I already had inflammation in my body, my disc bulged when I turned (I could be completely off base, but this is what I'm thinking).

Anyway, 2 years later, I developed more severe pain ... and developed peripheral neuropathy, along with lots of neurological things.

In 2001, I was under extreme stress ... and I mean extreme. My stomach started acting up a lot. Then, the sarc attacked my GI system.

About a month ago, my sarc shin granulomas came back (I always have skin lesions somewhere and always have since 1989, but I only had the "normal" skin granulomas once -- in 2000 when I was dx'ed with pulmonary sarc. Two weeks before my most recent shin granulomas came back, two things happened ... I became extremely stressed when denied for long-term disability, and my cat decided to attack my legs with claws drawn -- he seems to think this is "playing". Lymphatic fluid drained from the scratch marks for several hours. Perhaps it was one or both of the two incidents that happened which triggered the sarc granulomas to reappear on the shin; perhaps it was neither.

I find that with my body, any time there is a "weak" spot, for some reason, the sarc is triggered into attacking it. Perhaps if I did not have inflammation and hurt my back 2 years ago, I would not have NS today. and perhaps I am just completely "losing it" in trying to figure this out ....

Joan

Good luck to all with this very weird disease. Let's make our X-Mas or New Year's Wish to be for Remission. Take care.

~~~~ *** ~~~ *** ~~~ *** ~~~~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