Rebiff

[Guest guest]

Hi I am Janyce and I am on Rebiff. I started out on Copaxone after many shots

wiht bad side affects my Dr then put me on Copaxne. With a new Dr I was put on

Rebiff. Is there any one else on here on Rebiff? If so do you sometimes get pain

with the shot? It's not the needle but that medicine. Some times I just want to

stop all shots. Just not sure if it helps slow the MS down as they say.. But so

afraid if I do stop things will go even faster. I look at my legs and my mind

says I can walk without a walker but my legs won't do as I say. LOL It's hard to

understand what is wrond when my brain is fine..

[Guest guest]

I was on Rebif for several years. It gave me flu symptoms if I didn't

take Aleve and Tylenol exactly 1 hour before the shot. I didn't know

how critical it was to take the pain relievers before the shot and that

was why I had flu symptoms so bad. At one point I went off and tried

Copaxone but that left some strange impressions in my fat where it had

eaten the fat. Not bad if it is all over LOL but it isn't.

Right now I am off the Rebif because I don't have insurance but I am

taking alternative therapies and am doing very well. I certainly was

scared to go off of it but I didn't have a choice. I dont suggest going

off of any medicine, it helps to reduce the relapses. Rebif is supposed

to reduce them by 40% - or at least that is what my neuro had told me.

[Guest guest]

Hi you can get help from Rebiff on the cost. I don't pay any thing for it

every since I have been on it. I am married and it's based on income because it

is so high. Once a year we fill out papers and how much he makes. It comes right

to my door. Where do you live? I am in Texas. Janyce

>

> I was on Rebif for several years. It gave me flu symptoms if I didn't

> take Aleve and Tylenol exactly 1 hour before the shot. I didn't know

> how critical it was to take the pain relievers before the shot and that

> was why I had flu symptoms so bad. At one point I went off and tried

> Copaxone but that left some strange impressions in my fat where it had

> eaten the fat. Not bad if it is all over LOL but it isn't.

>

> Right now I am off the Rebif because I don't have insurance but I am

> taking alternative therapies and am doing very well. I certainly was

> scared to go off of it but I didn't have a choice. I dont suggest going

> off of any medicine, it helps to reduce the relapses. Rebif is supposed

> to reduce them by 40% - or at least that is what my neuro had told me.

>

>

>

[Guest guest]

Hi Janyce, I was on Rebiff for all of 6 months or so. The nurses told me the

pain with the injection was because the medicine was acidic. I also continually

got worse on my MRIs while I was on that and Betaseron. I'd love to say I'm off

medical medications (vs. supplement medications - everything we take on the side

of food can have impacts and reactions), but I have been on Tysabri for the last

couple years, with no side effects, though I get my JC virus antibody levels

checked once a year to keep an eye out for PML possibility. I've heard great

things on here about managing ms with diet, and my grandmother did great

managing hers with diet in the 70's, but with 2 kids and husband who does 98% of

the meal preparation, I'm making minuscule advances in changing my diet around.

~ in Nebraska

[Guest guest]

Hi Janyce,

I heard about that program but my problem right now to get back on Rebif

is to find a doctor where I am at now. I moved from Arizona to PA and

haven't seen a neuro since last October. I can't afford the doctor

visit but I am doing fairly well, am totally mobile. I have been using

supplements and vitamins and it has been keeping me well. I cannot

complain and when I can get to a doctor, I will certainly get a neuro

and see about the Rebif. Thanks a bunch for reminding me about that

program, I had forgotten about it.

Hi you can get help from Rebiff on the cost. I don't pay any thing

for it every since I have been on it. I am married and it's based on

income because it is so high. Once a year we fill out papers and how

much he makes. It comes right to my door. Where do you live? I am in

Texas. Janyce

>

> I was on Rebif for several years. It gave me flu symptoms if I didn't

> take Aleve and Tylenol exactly 1 hour before the shot. I didn't know

> how critical it was to take the pain relievers before the shot and that

> was why I had flu symptoms so bad. At one point I went off and tried

> Copaxone but that left some strange impressions in my fat where it had

> eaten the fat. Not bad if it is all over LOL but it isn't.

>

> Right now I am off the Rebif because I don't have insurance but I am

> taking alternative therapies and am doing very well. I certainly was

> scared to go off of it but I didn't have a choice. I dont suggest going

> off of any medicine, it helps to reduce the relapses. Rebif is supposed

> to reduce them by 40% - or at least that is what my neuro had told me.

>

>

>

[Guest guest]

Hi I have been on Rebif and not enjoying the side effects but pushing through.

But am now having difficulty breathing and read that this could be an allergic

reaction. Had severe nausea and vomiting when I started the medication so i

pre-treat with anti nausea pills.

[Guest guest]

I have been on Rebif since 2010, the medicine does burn/sting when injected,

even at room temp. To combat the flu symptoms I take two Aleve 1 hour before the

injection. My Neuro told me not to inject into my arms as it was too painful and

had severe pain no matter what I did. So far, I have not had a relapse so I'm

afraid to change anything.

Good luck Janyce!

Ingrid

>

> Hi I am Janyce and I am on Rebiff. I started out on Copaxone after many shots

wiht bad side affects my Dr then put me on Copaxne. With a new Dr I was put on

Rebiff. Is there any one else on here on Rebiff? If so do you sometimes get pain

with the shot? It's not the needle but that medicine. Some times I just want to

stop all shots. Just not sure if it helps slow the MS down as they say.. But so

afraid if I do stop things will go even faster. I look at my legs and my mind

says I can walk without a walker but my legs won't do as I say. LOL It's hard to

understand what is wrond when my brain is fine..

>

[Guest guest]

I'm glad there are a few drug therapy posts here. They point out the futility

and the harm they do.

   We need to repair and rebuild our nervous systems. The nervous system is the

very core of our physical being. Learn to nurture and love yourself enough to

dig hard and find the right answers. Find out what foods and things harm you,

find those things that will rebuild your core. And somehow, in doing this we

must be happy and have hope. There is a lot of good info in the messages and

files of this group. My sincere thanks to those of you who put all that

invaluable info and links there. 

   I'm still doing stairs one at a time, but not even a cane for 2 months now! 

J.

[Guest guest]

Boy does this bring back memories! I had my entire house set up so that

I could grab onto something from the couch to the bathroom. I even had

bookshelves back to back in the middle of a room.

I have been on a LONG journey just like everyone on here. Right now, I

am totally off meds, no gadget to help me get around, I can slip my

shoes on while standing on one leg. I was dx in 2005 and have gone from

wheelchair bound to being able to do a lot of things. This doesn't mean

I dont have other problems though.

I truly believe the rebif and other meds has caused my body to turn

against itself. That doesn't mean it is so but I do know, my outcomes

are much higher using natural methods. I have thyroidtoxicosis,

diabetes, high blood pressure and severe gastro-intestinal issues that

have yet to be diagnosed - oh and let's not forget the narcolepsy

(sleeping disease).

I believe the poster who mentioned diet and repairing is totally

correct, fix the problem, don't add more problems to fix another

problem. I am starting the McDougall Diet... its a slow process to get

off of meat and dairy but I am off dairy and now am working toward

getting totally off of meat. I will let you know if I have a good

outcome, I am going to give it a year and hopefully keep my thyroid!

>

> In agreement with what you said! Now, what are you doing that's let

> you go without the cane?!! I cannot fathom going more than about 2

> steps without my cane or other things to lean on (furniture, walls, etc).

>

> ~

>

>

> >

> > I'm glad there are a few drug therapy posts here. They point out the

> futility and the harm they do.

> > We need to repair and rebuild our nervous systems. The nervous

> system is the very core of our physical being. Learn to nurture and

> love yourself enough to dig hard and find the right answers. Find out

> what foods and things harm you, find those things that will rebuild

> your core. And somehow, in doing this we must be happy and have hope.

> There is a lot of good info in the messages and files of this group.

> My sincere thanks to those of you who put all that invaluable info and

> links there.

> > I'm still doing stairs one at a time, but not even a cane for 2

> months now! J.

> >

> >

[Guest guest]

I was on Rebif and then Betaseron for about 6 months each right after diagnosis

and I KNOW my body rejected them as I was consistently getting worse. Wish I

could say I was brave enough to go totally med free though, even though I have

yet to see ill effects from those I'm on.

Why meatless? I know my body does better with protein and as having married

into a cattle family, beef is our staple food in our house. Is it because of

the meds they give most animals?

Thank you,

>

> Boy does this bring back memories! I had my entire house set up so that

> I could grab onto something from the couch to the bathroom. I even had

> bookshelves back to back in the middle of a room.

>

> I have been on a LONG journey just like everyone on here. Right now, I

> am totally off meds, no gadget to help me get around, I can slip my

> shoes on while standing on one leg. I was dx in 2005 and have gone from

> wheelchair bound to being able to do a lot of things. This doesn't mean

> I dont have other problems though.

>

> I truly believe the rebif and other meds has caused my body to turn

> against itself. That doesn't mean it is so but I do know, my outcomes

> are much higher using natural methods. I have thyroidtoxicosis,

> diabetes, high blood pressure and severe gastro-intestinal issues that

> have yet to be diagnosed - oh and let's not forget the narcolepsy

> (sleeping disease).

>

> I believe the poster who mentioned diet and repairing is totally

> correct, fix the problem, don't add more problems to fix another

> problem. I am starting the McDougall Diet... its a slow process to get

> off of meat and dairy but I am off dairy and now am working toward

> getting totally off of meat. I will let you know if I have a good

> outcome, I am going to give it a year and hopefully keep my thyroid!

>

>

>

[Guest guest]

Hello,

Well, I am not sure about this theory (still being tested in clinical

trials) for everyone with MS but from what I have learned so far is that

meat isnt so much a problem unless you have leaky gut (I could be worng

on this, so check this part out), which I know I have and am trying to

get it corrected through diet. The reason it is a problem for those

with leaky gut is that the proteins in milk and meat pass through the

gut directly into the bloodstream where the immune system sends out

t-cells to combat them. They pass the brain barrier and voila - ms

attack - because the proteins are uncannily very very similar in

molecular structure to the myelin sheaths surrounding the nerves. The

t-cells just continue on their job, unknowingly attacking the nerve

coating. So I guess our t-cells aren't that bright... which everyone

with MS already knew

I can't speak for those without leaky gut and I don't know the science

behind it or why all people with MS " should " avoid dairy and meat,

according to some doctors. Maybe leaky gut is a problem for all people

with MS? I don't know. Anyway, Dr McDougall has a video

(http://www.drmcdougall.com/video/diet_ms.html) that goes into great

length on his site about MS, but it primarily focuses on leaky gut as

being a big contributor to it. There is still a huge dietary study

going on and he talks about that as well. I think the study is at the

University of Portland, not sure, didn't take notes

I took TONS of nsaids (aleve, etc) for a while and these cause quite a

bit of havoc on the intestinal system. I guess they are okay once in a

while but I was taking them every day, for years. Ugh... that is when

the MS started so it made sense to me how everything played out.

As I said, I am trying this out because I think it makes sense. So I am

a guinea pig. I do know that I am much healthier off the shots. I am

going to give it a year, not saying how " faithful " I will always be to

the meat and dairy thing but I am gonna give it my best shot.

I can't attribute everything to diet as far as my improvement goes, I do

take a TON of supplements, which helped before I started changing my diet.

Hope that all makes sense

>

> I was on Rebif and then Betaseron for about 6 months each right after

> diagnosis and I KNOW my body rejected them as I was consistently

> getting worse. Wish I could say I was brave enough to go totally med

> free though, even though I have yet to see ill effects from those I'm on.

>

> Why meatless? I know my body does better with protein and as having

> married into a cattle family, beef is our staple food in our house. Is

> it because of the meds they give most animals?

>

> Thank you,

>

>

>

> >

> > Boy does this bring back memories! I had my entire house set up so that

> > I could grab onto something from the couch to the bathroom. I even had

> > bookshelves back to back in the middle of a room.

> >

> > I have been on a LONG journey just like everyone on here. Right now, I

> > am totally off meds, no gadget to help me get around, I can slip my

> > shoes on while standing on one leg. I was dx in 2005 and have gone from

> > wheelchair bound to being able to do a lot of things. This doesn't mean

> > I dont have other problems though.

> >

> > I truly believe the rebif and other meds has caused my body to turn

> > against itself. That doesn't mean it is so but I do know, my outcomes

> > are much higher using natural methods. I have thyroidtoxicosis,

> > diabetes, high blood pressure and severe gastro-intestinal issues that

> > have yet to be diagnosed - oh and let's not forget the narcolepsy

> > (sleeping disease).

> >

> > I believe the poster who mentioned diet and repairing is totally

> > correct, fix the problem, don't add more problems to fix another

> > problem. I am starting the McDougall Diet... its a slow process to get

> > off of meat and dairy but I am off dairy and now am working toward

> > getting totally off of meat. I will let you know if I have a good

> > outcome, I am going to give it a year and hopefully keep my thyroid!

> >

> >

> >

>

>

[Guest guest]

While on Rebif, by taking walks with my GPS, was able to measure the Rebif

making me weaker / walking worse ! shared my data with the neurologist who said

" I've never heard of that before...KEEP TAKING IT !! Sadly, I kept taking the

Rebif. Now blame the Rebif for my current sorry shape of using a 4 wheel walker

to move through my home, dissability retirement, etc.

A video on Lyme Disease / MS

Lyme Disease - MS misdiagnosis - also has good story on LDN.

http://vimeo.com/2354218

The standard Lyme Disease our physicians use is notoriously inaccurate :-(

Symptoms:

www.CanLyme.com

more reliable blood test (the longer we have been sick, the less reliable ANY of

the tests are)

www.IgeneX.com

I sleep A LOT. Feel free to send me a direct message to wake me up.

>

> I to am on Rebiff and also think this why I feal so bad. Because of Rebiff I

now have Graves. I think at time to stop the Rebiff but so afraid to just not

sure if I should. I might get worse if I stop. On the days of my shot I don't

feal well. But it was the same when I was on Avonex but the Rebiff is so much

more medication. Copaxone was not good for me with bad side affects.I wished my

leggs would work like I tell them to.

>

[Guest guest]

Actually, the study of the McDougall diet and MS is being done at OHSU, Oregon

Health and Science University, in Portland. The University of Portland is an

entirely different institution. OHSU is where Dr. Swank did his work and

developed the original Swank diet that McDougall has expanded on. It is well

known for it's MS clinic. The study that they are currently doing is the first

double-blind study of an extremely low fat diet and MS. Double-blind studies

are considered the most authoritative, so I am waiting anxiously for the

results.

I have been eating reasonably low-fat for decades, but have just gotten really

serious about it three years ago. My husband was diagnosed with rheumatoid

arthritis and decided to follow the McDougall diet. Since then he has been in

almost complete remission, with symptoms tending tok coincide with going off the

diet. We are friends with a couple, one with RA and one with MS. The wife with

RA has also gone into remission. The husband with MS looked as if he was going

to develop a progressive form of MS, but he seems to have halted his downward

slide by strictly following this diet.

As I said, I've eaten dairy and fat for the past 3 1/2 decades since I've been

diagnosed, though less than the " average American " , and more strictly for the

past 3 years. I have my problems, mostly bladder, bowel, fatigue and cognitive

dysfunction, but I'm still mobile and not obviously sick. Hopefully, as I

follow the McDougall diet more closely, I'll keep my present health or improve.

When I hear the results of the OHSU study, I'll certainly post.

Ann

Sent from my iPad

On Jul 10, 2012, at 9:33 AM, Holistic Health and Energy

wrote:

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[Guest guest]

Thanks a bunch, glad someone knew about it. I am looking forward to the

results of the study, do you happen to know when it is expected to be over?

>

> Actually, the study of the McDougall diet and MS is being done at

> OHSU, Oregon Health and Science University, in Portland. The

> University of Portland is an entirely different institution. OHSU is

> where Dr. Swank did his work and developed the original Swank diet

> that McDougall has expanded on. It is well known for it's MS clinic.

> The study that they are currently doing is the first double-blind

> study of an extremely low fat diet and MS. Double-blind studies are

> considered the most authoritative, so I am waiting anxiously for the

> results.

> I have been eating reasonably low-fat for decades, but have just

> gotten really serious about it three years ago. My husband was

> diagnosed with rheumatoid arthritis and decided to follow the

> McDougall diet. Since then he has been in almost complete remission,

> with symptoms tending tok coincide with going off the diet. We are

> friends with a couple, one with RA and one with MS. The wife with RA

> has also gone into remission. The husband with MS looked as if he was

> going to develop a progressive form of MS, but he seems to have halted

> his downward slide by strictly following this diet.

> As I said, I've eaten dairy and fat for the past 3 1/2 decades since

> I've been diagnosed, though less than the " average American " , and more

> strictly for the past 3 years. I have my problems, mostly bladder,

> bowel, fatigue and cognitive dysfunction, but I'm still mobile and not

> obviously sick. Hopefully, as I follow the McDougall diet more

> closely, I'll keep my present health or improve.

> When I hear the results of the OHSU study, I'll certainly post.

>

> Ann

>

> Sent from my iPad

>

> On Jul 10, 2012, at 9:33 AM, Holistic Health and Energy

> <holistichealthandenergy@...

> <mailto:holistichealthandenergy%40gmail.com>> wrote:

>

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