Re: Need Some Information from MSers

[Guest guest]

Hi Al, I had a 5 day drip of solumedrol twice. I was getting worse and after ruling out a bladder infection, (any infection causes symptoms to worsen) I was put on a drip. The nurse came to the house every day to hook me up. This was much easier than a hospital stay. (Cheaper for the insurance too) It took a couple of hours. I was so hyper for a week then I crashed and slept for 2 days. My neuro does not believe in weaning off. The first time , it relieved symptoms,so I guess it was an attack I was having. A year later, it did nothing. I was on Rebif for both. I am now only on LDN and feeling much better. If your wife is SP or PP steroids will do nothing (my opinion) Why does he want to give her steroids? Is she having an attack ? As far as Copaxone and LDN , you can do both. A friend of mine had an appointment with Dr. Bihari last week and she is doing both because she is afraid to give up Copaxone. Hope this helps somewhat. Kiki

[Guest guest]

Actually, in one study where LDN was NOT used, patients on interferon

had elevated endorphin levels. The interferons might be a drastic

solution, especially if it turns out MS is *not* auto-immune, but they

are the best treatment besides LDN that has that property of affecting

endorphin levels.

No one is sure what copaxone does but for all we know it might

increase endorphin too. I don't think anybody can say that these

drugs cancel each other out. The problem with interferon is that

they don't really know why it does anything, assuming it does. Same

goes for copaxon though the usual story makes more sense. The

trouble is that the effects are only borderline, and I think the

stats are not strong enough to rule out worsening as a possible

outcome.

-Sullivan

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> From what I've read on this board so far, it seems to be generally

agreed that the interferons and LDN would cancel each other out. But

what about Copaxone and LDN? Anybody ever tried doing those

simultaneously, since Copaxone has a completely different makeup?

Also, has anyone out there ever had a five day treatment of steroid

drips for MS? My wife's neuro wants her to do this very soon and then

start on copaxone, but we're very reluctant to give up the LDN. Any

input would be appreciated.-Al

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[Guest guest]

You can do copaxone and ldn together....I'd rather see her do that,

than give up ldn.....and PLEASE, keep her away from those

steroids....they do more harm than good....my 2 cents.

Bless you both and your struggle for wellness.

Sally

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> From what I've read on this board so far, it seems to be generally

agreed that the interferons and LDN would cancel each other out. But

what about Copaxone and LDN? Anybody ever tried doing those

simultaneously, since Copaxone has a completely different makeup?

Also, has anyone out there ever had a five day treatment of steroid

drips for MS? My wife's neuro wants her to do this very soon and

then start on copaxone, but we're very reluctant to give up the LDN.

Any input would be appreciated.-Al

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[Guest guest]

All my neuro wants to do is put

me on steroids. He wants me to go into the hospital for 4-5 days

and says it may or may not help. Can you believe it?? I have

two little kids so there's now way I would do that to myself. The

nerve of him . . .no pun intended.

Sally wrote:

You can do copaxone and ldn together....I'd

rather see her do that,

than give up ldn.....and PLEASE, keep her away from those

steroids....they do more harm than good....my 2 cents.

Bless you both and your struggle for wellness.

Sally

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>

>

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> From what I've read on this board so far, it seems to be generally

agreed that the interferons and LDN would cancel each other out.

But

what about Copaxone and LDN? Anybody ever tried doing those

simultaneously, since Copaxone has a completely different makeup?

Also, has anyone out there ever had a five day treatment of steroid

drips for MS? My wife's neuro wants her to do this very soon and

then start on copaxone, but we're very reluctant to give up the

LDN.

Any input would be appreciated.-Al

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>

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[Guest guest]

I've had steroids on three occasions now, once by IV and twice in tablet form and did not notice symptoms fading any faster than on other occasions when I took nothing at all for a relapse. For me a relapse was the pins and needles type numbness in my legs together with extreme fatigue. Personally, I have found that this sensation wears off on its own between 5-8weeks so I would rather wait it out than fill my body full of steroids. I assume that they must help some people or doctors wouldn't keep prescribing them.

Sue

From: Allan Eisel

low dose naltrexone

Sent: Saturday, November 15, 2003 9:23 PM

Subject: [low dose naltrexone] Need Some Information from MSers

From what I've read on this board so far, it seems to be generally agreed that the interferons and LDN would cancel each other out. But what about Copaxone and LDN? Anybody ever tried doing those simultaneously, since Copaxone has a completely different makeup?Also, has anyone out there ever had a five day treatment of steroid drips for MS? My wife's neuro wants her to do this very soon and then start on copaxone, but we're very reluctant to give up the LDN. Any input would be appreciated.-Al

[Guest guest]

:

Is your wife experiencing an onslaught on sypmtoms? I'm womdering

why the doctor wants her to do this? If you have the chance to check

on what Dr Lawrence writes on the MS Resoucse Center website, he

states that the steroids and the LDN will cancelled each other out.

I corrseponded with him about my sister in law who just started LDN.

She is weaning out of oral steroids and down to 20 mg a day. Dr,

lawrence said she was wasting her time taking th eLDN until she had

been off the sreroids for 2 weeks. My sister in law has had 14 of

the IVs of solumendrol in the past 6 months. Each IV has 1000mg of

steroid. I would avoid this if at all possible.

Debbie

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> From what I've read on this board so far, it seems to be generally

agreed that the interferons and LDN would cancel each other out. But

what about Copaxone and LDN? Anybody ever tried doing those

simultaneously, since Copaxone has a completely different makeup?

Also, has anyone out there ever had a five day treatment of steroid

drips for MS? My wife's neuro wants her to do this very soon and then

start on copaxone, but we're very reluctant to give up the LDN. Any

input would be appreciated.-Al

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[Guest guest]

I know....they all do that....we have to protect our own bodies....and you are right about steroids not working after you progress to SP or PP...just makes a wreck out of you!!!

Sally

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

From: Braun Doherty

All my neuro wants to do is put me on steroids. He wants me to go into the hospital for 4-5 days and says it may or may not help. Can you believe it?? I have two little kids so there's now way I would do that to myself. The nerve of him . . .no pun intended. Sally wrote: You can do copaxone and ldn together....I'd rather see her do that, than give up ldn.....and PLEASE, keep her away from those steroids....they do more harm than good....my 2 cents. Bless you both and your struggle for wellness. Sally > > > > > From what I've read on this board so far, it seems to be generally agreed that the interferons and LDN would cancel each other out. But what about Copaxone and LDN? Anybody ever tried doing those simultaneously, since Copaxone has a completely different makeup? Also, has anyone out there ever had a five day treatment of steroid drips for MS? My wife's neuro wants her to do this very soon and then start on copaxone, but we're very reluctant to give up the LDN. Any input would be appreciated.-Al > > > _______________________________________________

[Guest guest]

FORWARDING........

----- Original Message ----- From: Pjbittner@...

salpal@...

Sent: Sunday, November 16, 2003 8:40 PM

Subject: Re: [low dose naltrexone] Re: Need Some Information from MSers

Hi,my son has been on avonex,betaseron and rebif all have made him worse.

we went back on l.d.n and he got so much betterafter we took him offthe rebif. also he takes

bee venom not the stings they have the venom in tablets he takes the tablets.and does so much better.and the person who advised you not to go on steroids was right.i have read many articles from the experts that say giving the steroids is the worst thing a doctor can do.

it is a quick fix at best an only works 2 or 3 times and then loses the ability to be efective

anylonger.

pjbittner

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[Guest guest]

Sally, where do you get your info about steroids and SPMS? (And you can't progress to PPMS, which I don't think you actually meant to say. I do know PPMSers who have used steroids.)

I have secondary progressive, and I have used IV steroids for optic neuritis. They cleared it up quickly . . . much, much faster than my recovery has been without them. While I am careful about how much I use steroids, being of menopausal age, and while the psychological side effects are rather bizarre, steroids retain short-term effectiveness, at least for this MSer.

Galoux

[Guest guest]

Hi Bou,

I learned of the ineffectiveness of Steroids in spms, from

experience and listening to others with the same results, and

finally from my Neuro. I know nothing about ppms and would never

have said that " you can't progress from spms to ppms " Did I say

that?? Where? When?

I take it all back, when it comes to optical neuritis....I have

heard people with that problem do have good results with steroids.

I think that's where using steroids for MS got started....because

many msers may start an exacerbation with eye symptoms first and

steroids would stop the exacerbation. All I know is that it worked

the first time, like a charm and I went into a long remission (17

years). So naturally, when I had my last relapse I used steroids

again and again and again. It not only didn't stop the flare, but

made me crazy and sleepless. And remember, with steroids, there can

be much bone loss......I know some, who now have Osteoperosis.

Hope this helps all in making their own decision about using

steroids.

Hugs, Sally

--- In low dose naltrexone , " Bou " <lswillia@b...>

wrote:

> Sally, where do you get your info about steroids and SPMS? (And

you can't progress to PPMS, which I don't think you actually meant

to say. I do know PPMSers who have used steroids.)

>

> I have secondary progressive, and I have used IV steroids for

optic neuritis. They cleared it up quickly . . . much, much faster

than my recovery has been without them. While I am careful about how

much I use steroids, being of menopausal age, and while the

psychological side effects are rather bizarre, steroids retain short-

term effectiveness, at least for this MSer.

>

> Galoux