Weakness and falling

[blskat1]

Hello, Prednisone was reduced and I have now fallen 3 times this
weekend. Waiting on MD's to call me back. Is falling and leg
weakness usual for a CIDP pt?

[Imran Khan]

if reducing it makes you fall please go back to waht you were taking.

Yes falls and leg weakness are main symptoms of cidp.

do you have the autoimmune e.book,:the flame within".
avaliable at www.cidpusa.org

Are you on any other treatment? which city are in?

Ron

--
I.K

[blskat1]

I'm in Bradenton, Florida.
MD increased Prednisone to 80 mg a day for one week, and then will
decide to do plasmaphoresis or not to. I've already had a week of
IVIG.
On CellCept 1000 mg twice a day, Arava 20 mg every other day, and the
Prdsisone.
I have already purchased the e-book and am slowly reading it.

On Nov 19, 1:45 pm, "Imran Khan" <imran.kha...@gmail.com> wrote:
> if reducing it makes you fall please go back to waht you were taking.
>
> Yes falls and leg weakness are main symptoms of cidp.
>
> do you have the autoimmune e.book,:the flame within".
> avaliable atwww.cidpusa.org
>
> Are you on any other treatment? which city are in?
>
> Ron
>

[Vicki Bane]

I am so sorry you are having to deal with all of this but here you are among those who understand.  Take what comfort you can from that. 

blskat1 <bls...@msn.com> wrote:

I'm in Bradenton, Florida.
MD increased Prednisone to 80 mg a day for one week, and then will
decide to do plasmaphoresis or not to. I've already had a week of
IVIG.
On CellCept 1000 mg twice a day, Arava 20 mg every other day, and the
Prdsisone.
I have already purchased the e-book and am slowly reading it.

On Nov 19, 1:45 pm, "Imran Khan" wrote:
> if reducing it makes you fall please go back to waht you were taking.
>
> Yes falls and leg weakness are main symptoms of cidp.
>
> do you have the autoimmune e.book,:the flame within".
> avaliable atwww.cidpusa.org
>
> Are you on any other treatment? which city are in?
>
> Ron
>

> On 11/19/07, blskat1 wrote:
>
>
>
> > Hello, Prednisone was reduced and I have now fallen 3 times this
> > weekend. Waiting on MD's to call me back. Is falling and leg
> > weakness usual for a CIDP pt?
>
> --
> I.K

---

Never miss a thing. Make Yahoo your homepage.

[Beth Steinman]

Vickie, thanks for your response. How long have you dealt with CIDP
and what has been your most effective treatment?

--
God's love and blessing's to you this day.

[Vicki Bane]

3 years.  Ivig has done the most good.  Steroids were horrible, so many side effects.  Now we are trying Cellcept.  I've been on it for one month.  After 3 months we are going to try cutting the Ivig in half, then in forth and then stop to see if the Cellcept will keep me where I am now.  I currently have Ivig every 8 weeks for two days.  I usually wind up in the bed for a few days afterwards but it's worth it.

Beth Steinman <bls...@gmail.com> wrote:

Vickie, thanks for your response. How long have you dealt with CIDP
and what has been your most effective treatment?

On Nov 20, 2007 2:27 PM, Vicki Bane wrote:
> I am so sorry you are having to deal with all of this but here you are among
> those who understand. Take what comfort you can from that.
>

[CIDP]

Dont foregt your omega-3 , fish oil the recomended dose is 3000 mg
daily, consider starting from one capsule daily........
With prednisone you need vitamin D, one excellent source is codliver
oil,

Green tea , avoild chemicals , after shave , deodrants, smell of
pestacides

Drink more water 7-8 glasses Florida stays humid if you are sweating
drink more.

Cut down carbs, more herbs like onion, curcumin, garlic,
Dont take MSG in food, avoid FLOURIDE IN TOOTHPASTE, avoid teflon
coated pans, avoid microwave,

Extra olive oil is good.


Ron

[Beth Steinman]

I drink at least 3 glasses of green tea a day. will follow advice on
chemicals.
Take extra d, and flax seed oil, guess i should add omega 3.
I drink a ton of water. Do not like soda pop, etc.
How long have you had CIDP and do you know if plasmaphersis helps?
Guess, I'm just to new to this. Less than a month ago I was
exercising, walking, and using stationary bike, now I'm on a walker
and no muscle mass in legs left in < 6 weeks.

--

[Beth Steinman]

I had one 5 day treatment of IVIG. I'm on 2000 mg of CellCept a day,
MD says I'm to try it for one month to 6 weeks. It is very expensive
and will not be able to afford to stay on it long.
MD mentioned more IVIG and starting Plasmaphersis. Will know on Mon.
about the plasmaphersis.
Are you independent in daily living and not on any assistive devices
at present?
Thanks for your responses and hope your day is going well.

[Vicki Bane]

Yes I'm still able to work and function as normal.  I do start getting tired and easily fatigued when it gets close to treatment time.  Also numbness increases.  I am blessed in that I have insurance that covers the lion's share of the Cellcept and the Ivig.  Cellcept is at least the less expensive of the two.

Beth Steinman <bls...@gmail.com> wrote:

I had one 5 day treatment of IVIG. I'm on 2000 mg of CellCept a day,
MD says I'm to try it for one month to 6 weeks. It is very expensive
and will not be able to afford to stay on it long.
MD mentioned more IVIG and starting Plasmaphersis. Will know on Mon.
about the plasmaphersis.
Are you independent in daily living and not on any assistive devices
at present?
Thanks for your responses and hope your day is going well.

On Nov 20, 2007 2:47 PM, Vicki Bane wrote:
> 3 years. Ivig has done the most good. Steroids were horrible, so many side
> effects. Now we are trying Cellcept. I've been on it for one month. After
> 3 months we are going to try cutting the Ivig in half, then in forth and
> then stop to see if the Cellcept will keep me where I am now. I currently
> have Ivig every 8 weeks for two days. I usually wind up in the bed for a
> few days afterwards but it's worth it.
>

---

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[CIDP]

If one has to improve muscle mass consider massage of muscle to
stimulate blood flow< consider DHEA the over th ecounter muscle
building hormone
muscle stimulator may help

Ron.